Overcoming barriers to earlier diagnosis of dementia in primary care is a core ambition of several government initiatives in the UK, with incentives put in place to promote earlier recognition by general practitioners and referral to specialists. This study was designed to explore general practitioners’ opinions concerning barriers to diagnosing dementia, following implementation of strategies aimed at reducing them. The study involved in-depth, semi-structured interviews with 13 general practitioners from seven practices in North London or the West Midlands. Thematic analysis of interview transcripts was carried out using the Framework approach. We identified four major themes: organisational factors, clinician-related factors, patient-related factors and societal influences. The study findings revealed barriers previously unidentified in the literature which warrant further investigation, including the limits of diagnostic tools, lack of cultural applicability of these tools, and prioritisation of severe over mildly symptomatic patients by dementia services.
Spirituality is an important aspect of humanity. Concerned with deriving meaning from events, and connection with others, it provides a mechanism for some to cope with illness and disability. While spiritual support is recognised as important, little is known about the spiritual needs of those people experiencing dementia. This meta-synthesis considers the experiences of spirituality from the perspective of people living with a diagnosis of dementia. Using a review protocol, key words from a preliminary scoping review were used to direct database searches in November 2013. A total of 667 papers were initially identified. However, following careful quality review assessment a final eight papers were selected. Findings demonstrated the ongoing importance of spirituality to people living with dementia and its importance as a means of finding hope, meaning and linkage with past, present and future. Expression of spirituality through faith practices, contact with faith communities, and the impact of dementia on these, were also highlighted.
Perceived self-efficacy is proposed to impact on the psychological health of dementia care staff. The current study adopted a qualitative methodology to increase understanding of the experiences of self-efficacious care assistants. Purposive sampling identified eight care assistants with high levels of self-efficacy. Data from semi-structured interviews were analysed using interpretative phenomenological analysis. Four themes captured experiences of ‘feeling torn’ between competing demands when providing care; a sense of ‘togetherness and connection’, included sub-themes of support, closeness and the value of engaging; ‘emotional attunement’ to resident’s needs, including reciprocity of emotion, personal perspective-taking and empathy as guides to care. The final theme, ‘caring as a part of life’, described interest, motivation and accepting attitudes as well as caring being part of carers’ identity. The themes highlight how staff might manage the dilemmas they face and emphasize important areas for care staff training as well as further research.
Western health care policy emphasizes continuity of care for people with dementia. This paper presents formal and family caregivers’ descriptions of collaboration in home-based dementia care and explores whether this collaboration inhibits or enables continuity of care and the use of the statutory individual plan. Empirical data were derived from 18 in-depth interviews with formal and family caregivers and brief fieldwork. The results reveal dynamic positions in collaborative practice and, from these positions, discrepancies in descriptions of practices and the needs of the person with dementia. Such micro-level discrepancies may serve as barriers for macro-level continuity of care objectives. To ensure continuity of care, formal and family caregivers must be aware of their positions and discuss specific expectations for information flow, involvement and care responsibilities. Individual plan can serve as a starting point for such discussions.
People with advanced dementia living in care homes can experience social death before their physical death. Social death occurs when a person is no longer recognised as being an active agent within their relationships. A shift is required in how we perceive people with advanced dementia so that the ways they continue to be active in their relationships are noticed. Paying attention to embodied and interembodied selfhood broadens the scope and opportunities for relationships with people with advanced dementia, acting as a counter to social death. This has the potential to improve the quality of care, including end of life care, of people with advanced dementia in care homes. This study examined the role of embodied and interembodied selfhood within care-giving/care-receiving relationships in a specialist dementia care home. Empirical findings and their implications for the development of relationship-centred care and the Senses Framework in care homes are discussed.
This paper examines how the relatives of a person with dementia experience challenges in everyday life. A model of phases is developed on the basis of interviews with 14 relatives from eight families. Data were subjected to a thematic content analysis, which found that the progression of dementia – from the perspective of the family – had three phases. These phases involved small changes in everyday life, adaptations to everyday life, and the loss of everyday life. The analysis further identified the following two archetypes of relatives that develop throughout the progression of dementia: the protective relative and the decisive relative. The study found that the two types of relatives experience different challenges during the three phases. It is important for health professionals to be familiar with these changes, when they evaluate whether the relatives of a person with dementia require help.
This exploratory study compares the impact of five activity types on the well-being of institutionalized people with dementia: the intergenerational art program Opening Minds through Art, art and music therapies, creative activities, non-creative activities, and no activities at all. We validated the Scripps Modified Greater Cincinnati Chapter Well-Being Observational Tool, and used that instrument to systematically observe N = 67 people with dementia as they participated in different activity types. People with dementia showed the highest well-being scores during Opening Minds through Art compared to all other activities. No significant well-being differences were found between creative activities led by licensed art/music therapist versus regular activity staff. Furthermore, no significant well-being differences were found between creative and non-creative activities that were both led by regular activity staff. Overall, people with dementia benefit from participating in activities, regardless of the type (creative or non-creative), or who conducts them (licensed therapists or activity staff). However, in order for people with dementia to reach significantly high levels of overall well-being, we recommend that activities are specifically designed for people with dementia and incorporate a 1:1 ratio between people with dementia and well-trained volunteers/staff members.
Stigma and social isolation are major challenges in building dementia friendly communities. Information is a key factor in improving knowledge and attitudes about dementia. This cross-sectional survey aimed to investigate public attitudes towards people with dementia in an urban community in Japan. Nearly 90% of the participants responded that they were able to have a good relationship with a person with dementia and help such a person if needed. However, around half of the participants would be ashamed of a family member with dementia. A multiple regression model showed that information from television and educational classes was associated with positive attitudes towards people with dementia among older adults. Information from educational classes and the Internet was likewise associated with positive attitudes among the volunteers. Increasing the availability and accessibility of information on dementia may contribute to improving public attitudes towards people with dementia.
Providing care to persons with Alzheimer's disease poses challenges for spouses and adult children, including experiencing stigmatic beliefs towards themselves—i.e., family stigma. Drawing on the frameworks of ethnicity and stigma and ethnicity and dementia, the current study explored stigmatic experiences among Israeli Arab family caregivers of a person with Alzheimer's disease. Three focus groups with 20 caregivers (adult children and spouses) of persons with Alzheimer's disease were conducted. Data were analyzed using theory-led thematic analysis. Caregivers reported experiencing family stigma in two dimensions: public and affiliate stigma, in both the existence of an attribution process in which cognitive stereotypes elicit negative and positive emotions which in turn provoke behavioral attributions, was evident. Family stigma was found to be a discernible feature of everyday reality among Israeli Arab caregivers of persons with Alzheimer's disease and stress the importance of developing management strategies that are tailored to the socio-cultural characteristics of the caregivers.
The Cognitive Daisy is an innovative assessment system created to provide healthcare staff with an instant snapshot of the cognitive status of older adults in residential care. The Cognitive Daisy comprises a flower head consisting of 15 colour coded petals depicting information about: visual-spatial perception, comprehension, communication, memory and attention. This study confirmed the practicality of the Cognitive Daisy protocol for assessing cognition in a sample of 33 older adults living in residential care and endorsed the use of the Cognitive Daisy as a tool for recognising the cognitive status of care home residents.
The aim of this study was to assess in practice whether assistive technologies support and facilitate the work of a family caregiver or care staff, and whether these technologies support the independence of a person with a memory disorder. A comprehensive set of supportive devices and alarm systems were experimentally tested in the care of five test subjects in an assisted living facility by eight nurses, and in the care of four test subjects in a home environment by three family caregivers and one care team. Questionnaires, diaries and logged data were used to evaluate the benefits of the devices. Simple aids and alarm systems that did not need much adjusting were considered most useful by caregivers and nurses, though multiple false alarms occurred during the test period. Technical connection problems, complex user interface, and inadequate sound quality were the primary factors reducing the utility of the tested devices. Further experimental research is needed to evaluate the utility of assistive technologies in different stages of a memory disorder.
Dementia affects individuals, families and their relationships. While there is increasing evidence about the experiences of family caregivers of people with dementia, relatively little is known of their experiences when their relatives are living in nursing homes with dementia. This narrative literature review aimed to synthesise current knowledge about family caregivers’ experience of having relatives living in nursing homes with advanced dementia, particularly focussing on community-dwelling spouses. Using a systematic approach, textual narrative synthesis was undertaken. Four themes were identified: changing relationships, the need for companionship, adjusting to new roles and relationships and anticipating death/looking towards the future. Two additional themes were present only for spouses: changing identity – feeling married, being married; and alone but... The review demonstrates that some aspects of spouses’ experiences are different from those of other family caregivers. Longitudinal studies are required to better understand spouses’ motivations to continue caring in this context and to find ways of supporting them.
In Australia, the majority of people with dementia live in the community with informal care provided by family, commonly a spouse. A diagnosis of dementia is a threat to one’s personhood and is often accompanied by perceptions of future dependency, which will involve the inability to carry out conventional roles and complete everyday tasks including making decisions. Being able to make decisions, however, is part of being a ‘person’ and it is through relationships that personhood is defined and constructed. In face-to-face interviews with seven couples (a carer and person with dementia dyad) and two spouse carers, this study explored why, and how, spouse carers support continued involvement in decision-making for people with dementia. The findings highlight the importance of loving and respectful relationships in the development of strategies to support continued decision-making for people with dementia.
Despite increasing attention given to dementia by international governments and policy makers, the focus of end of life care has been on the dying trajectory of malignant disease. People with severe dementia have complex physical and psychological needs, yet the disease is not always recognised as terminal. Advance Care Planning involving people with dementia and their families can provide opportunities to discuss and later, initiate timely palliative care.
We conducted a scoping review of studies exploring decisions associated with the EoLC of people with dementia. Eligible studies had to report on decision making at the end of life and by whom (the dying person, clinician/health professional or relative/family member).
Twenty-five eligible studies reported on Advance Care Planning and end of life care decisions for individuals with dementia. The papers highlight several challenges that need to be addressed in order to provide adequate and effective care for people with dementia as they near the end of their life.
A visit to an emergency department can be a disorientating experience for someone with dementia. Empowered caregivers can mitigate harm stemming from communication issues to support a successful emergency department visit. A qualitative study determined the feasibility of the structure, format, and content of eight hospital-readiness communication tools. Data collection involved English and French-language caregiver focus groups in two Canadian provinces. Study findings have the potential to (a) improve safety in emergency care to older people with dementia and their caregivers, and (b) offer cost-effective communication tools for web-based knowledge translation activity in acute care.
With the ongoing need to determine effective memory interventions for persons with dementia and other memory impairments, the purpose of this study was to create a unique learning opportunity, where persons with early to moderate Alzheimer’s engaged in game play activity. Six female participants, diagnosed with early to moderate dementia, were recruited from an adult day care center and participated in a 10-week study. The participants were placed in groups of three and were taught a tile placement game. Results indicate playing the game yielded inconsistent, but some significant, increases and eventual plateauing of knowing when it was their turn. The results also indicate the participant’s maintained improvement in tile placement over the study period. Tile placement accuracy increased over rounds, which points to the importance of practice to maintain learned behavior. The game provided a platform for learning, social engagement, and occupied their time meaningfully.
The need for meaningful activities that enhance engagement is very important among persons with dementia (PWDs), both for PWDs still living at home, as well as for PWDs admitted to a nursing home (NH). In this study, we systematically registered behaviours related to engagement in a group animal-assisted activity (AAA) intervention for 21 PWDs in NHs and among 28 home-dwelling PWDs attending a day care centre. The participants interacted with a dog and its handler for 30 minutes, twice a week for 12 weeks. Video-recordings were carried out early (week 2) and late (week 10) during the intervention period and behaviours were categorized by the use of an ethogram. AAA seems to create engagement in PWDs, and might be a suitable and health promoting intervention for both NH residents and participants of a day care centre. Degree of dementia should be considered when planning individual or group based AAA.
Dementia Care Mapping™ is widely acknowledged as the gold standard observational method that can support the introduction of person centred care into a variety of settings (http://www.bradford.ac.uk/health/dementia/dementia-care-mapping/). It encourages care staff to think about how the person with dementia is experiencing the care provided and the care setting. It has been shown to raise care staff awareness sufficiently to bring about improvements in care. In this paper, we describe a programme of work in North Wales that seeks to find innovative ways to use Dementia Care Mapping™, in acute mental health admission wards for people affected by dementia, and we set out some of those innovations.
This qualitative study explored the impact of a Boccia (modified indoor bowls) group on the lives of people with dementia and their carers. Semi-structured interviews with people with dementia (N = 6), carers (N = 10) and the group organisers (N = 6) analysed using thematic analysis revealed four main themes. ‘The struggle of being a carer’ was relieved by participating in the group and benefitting from the caring support and social aspects of "This group is a family". "The unique nature of Boccia" helped it to provide physical and mental stimulation as well as being an inclusive and enjoyable group. These aspects contributed to many participants describing the group as a Dementia friendly environment where "Here everyone is the same": treated as equals, without feeling hindered or defined by dementia. Boccia appears an exciting initiative but further research is needed to see if these findings can be replicated with other groups.
This study examined the effect of a Multicomponent Training (MT) intervention on cognitive function, functional fitness and anthropometric variables in institutionalized patients with Alzheimer’s disease (AD). Thirty-seven institutionalized elders (84.05 ± 5.58 years) clinically diagnosed with AD (mild and moderate stages) were divided into two groups: Experimental Group (EG, n = 19) and Control Group (CG, n = 18). The EG participated in a six-month supervised MT program (aerobic, muscular resistance, flexibility and postural exercises) of 45–55 minutes/session, twice/week. Cognitive function (MMSE), physical fitness (Senior Fitness Test) and anthropometric variables (Body Mass Index and Waist Circumference), were assessed before (M1), after three months (M2) and after six months (M3) of the experimental protocol. A two-way ANOVA, with repeated measures, revealed significant group and time interactions on cognitive function, chair stand, arm curl, 2-min step, 8-foot up-and-go (UG), chair sit-and-reach (CSR) and back scratch tests as well as waist circumference. Accordingly, for those variables a different response in each group was evident over the time, supported by a significantly better EG performance in chair stand, arm curl, 2-min step, UG, CSR and back scratch tests from M1 to M3, and a significant increase in MMSE from M1 to M2. The CG’s performance decreased over time (M1 to M3) in chair stand, arm curl, 2-min step, UG, CSR, back scratch and MMSE. Results suggest that MT programs may be an important non-pharmacological strategy to improve physical and cognitive functions in institutionalized AD patients.
The involvement of people living with dementia in research has traditionally been located in the realms of ‘subject’ or ‘participant’. However, there has been an increase in demand for greater transparency by academic bidding teams (particularly within the UK) in demonstrating how people with a lived experience have been and will be involved in the research process. Located within the Economic and Social Research Council/National Institute for Health Research (ESRC/NIHR)-funded Neighbourhoods and Dementia Study (2014–2019), led by The University of Manchester (UK), this paper outlines the development of the CO-researcher INvolvement and Engagement in Dementia (COINED) Model, which was co-produced alongside three independent groups of people living with dementia: Open Doors, the Scottish Dementia Working Group and EDUCATE.
This article describes the implementation of SHARE (Support, Health, Activities, Resources, and Education), a counseling-based care-planning intervention for persons living with early-stage dementia and their family caregivers (CGs). The foundation of SHARE is built upon assessing and documenting the person living with dementia’s care values and preferences for future care. Using the SHARE approach, CGs are given an opportunity to achieve an understanding of their loved one’s desires before the onset of disease progression when the demand for making care decisions is high. Through working together with a SHARE Counselor, the care dyad begins to identify other sources of support, such as family and friends and service providers, in order to build a more balanced and realistic plan of care for the future. Data were collected from 40 early-stage dementia care dyads to determine the acceptability of having structured discussions about future care in the early stages of dementia. Findings from this study demonstrate the importance of planning in the early stages when persons with dementia can voice their care values and preferences for future care. Finally, this paper illustrates the use of supportive strategies such as rapport building, establishing buy-in, and communication to initiate care-related discussions with care dyads in the early stages that will help lead to more effective decision making in the future.
The goal of this study was to estimate the rate of the progression of mild cognitive impairment to dementia and identify the potential risk factors in German specialist practices from 2005 to 2015. This study included 4633 patients aged 40 years and over from 203 neuropsychiatric practices, who were initially diagnosed with mild cognitive impairment between 2005 and 2013. The primary outcome was diagnosis of all-cause dementia recorded in the database until the end of the five-year follow-up period. Cox regression models were used to examine mild cognitive impairment progression to dementia when adjusted for confounders (age, sex, and health-insurance type). The mean age was 68.9 years and 46.6% were men. After the five-year follow-up period, 38.1% of women and 30.4% of men had been diagnosed with dementia (p < 0.001). The share of subjects with dementia increased with age, rising from 6.6% in the age group of ≤ 60 years to 64.7% in the age group of > 80 years (p < 0.001). Men were at a lower risk of being diagnosed with dementia than women (hazard ratio = 0.86). Patients in the age groups 61–70, 71–80, and > 80 years also had a higher risk of developing this psychiatric disorder, with hazard ratios ranging from 3.50 to 11.71. Finally, mild cognitive impairment was less likely to progress to dementia in people with private health-insurance coverage than in people with public health-insurance coverage (hazard ratio = 0.69). Around one in three patients developed dementia in the five years following mild cognitive impairment diagnosis. Sex, age, and type of health insurance were associated with this risk.
Due to the increasing social and economic costs of dementia, there are urgent calls to develop accessible and sustainable care for people with dementia and their caregivers. Multi-component non-pharmacological interventions (NPIs) appear effective in improving or maintaining daily functioning and well-being, but are typically labour-intensive for health care professionals, thus hindering access. The current study aimed to explore the feasibility and acceptability of a novel approach to widen access to NPI by involving caregivers to present part of the intervention and with staff from local support organizations instructed to train the caregivers. Trainers and caregivers were shown to comply with training instructions and the direct intervention costs were low. Feedback from trainers and caregivers was positive and well-being ratings from people with dementia and caregivers remained stable over time and caregivers’ sense of competence improved. The findings suggest that involving caregivers and trained non-professionals to provide the intervention is feasible and acceptable and could be a cost-effective solution to improve access to care.
Dementia caregiving is thought to have a negative impact on health and wellbeing. This critical review of qualitative literature explored the lived experience of familial dementia caregivers from an occupational therapy perspective. The method was informed by systematic review and qualitative research methodologies and was structured within the occupational dimensions framework of doing–being–becoming–belonging. A comprehensive search of major databases was undertaken which identified 484 studies on the topic; 14 met the inclusion criteria and were included in the review. Ten themes emerged within the doing-being-becoming-belonging framework from the analysis of the studies. The occupational participation of caregivers is conveyed within the ‘doing’ domain. Ways in which caregiving impacts upon opportunities for self-nurture are presented within the ‘being’ domain. The ‘becoming’ domain elucidates ways in which caregivers redefine themselves, their values and their priorities through their caregiving role. The ‘belonging’ domain depicts ways in which caregivers’ connections with their care recipient and others are shaped over time. Practice implications for health and social care practitioners who work with familial dementia caregivers are presented in light of the findings.
The quality of care of persons with dementia in hospitals is not optimal and can be challenging. Moreover, staff may find difficulty in translating what they have learned during training into practice. This paper report the development and evaluation of a set of workshops using an appreciative inquiry approach to implement person-centred dementia care in two hospital wards. Staff worked collaboratively to develop a ward vision and to implement a number of action plans. Using appreciative inquiry approach, staff attitudes towards persons with dementia improved, inter-professional collaboration was enhanced and small changes in staff practices were noted. Dementia care in hospitals can be enhanced by empowering staff to take small but concrete actions after they engage in appreciative inquiry workshops, during which they are listened to and appreciated for what they can contribute.
This paper reports on a pilot study evaluating the impact of a series of interactive and educational maritime archaeological sessions for people with dementia. A typical archaeological approach was adopted including excavations, recovery and reconstruction of artefacts. Findings from this study demonstrate the importance of providing information, delivering alternative activities, enabling educational opportunities and offering support to and for people living with dementia. Our findings further illustrate that people with dementia can be included in maritime archaeology and that including people with dementia in heritage-based initiatives is possible.
In Germany, the use of life story work as an approach to care in nursing homes has not been implemented successfully. Using Grounded Theory, we explored care staff’s understandings of life story work when caring for persons with dementia. Thirty-six staff from seven nursing homes participated in semi-structured interviews or group discussions. In this paper we discuss new aspects and theoretical connections between understandings and practices of life story work. For some participants, obtaining ‘true facts’ about a resident’s course of life was considered the most important topic. Others highlighted the importance of narratives as well as embodied stories told by persons with dementia, as aspects that generated emotionally meaningful situations. Delivering sound life story work can be challenging for care staff working with persons with dementia. To enhance care in nursing homes, the importance of life story work needs to be further developed.
This study explored the emergence of dementia in people who were still working. A qualitative life course approach was used to describe the experience from the onset of dementia-related symptoms to the time when the person left the workforce. The emergence of dementia at work for the participants in this study took the form of a slow transition that initially was not noticed by co-workers. It brought about subtle changes as the person became forgetful, disorganised, made mistakes and was slower. Over time the person’s job performance continued to deteriorate and others at the workplace started to realise that there was a problem. Some were seen to be poor workers and so experienced difficulties with supervisors and co-workers. Others encountered difficulties managing changing relationships at work and negotiating the complex world of the workplace. Few were able to continue working beyond their diagnosis, and several raised concerns about the lack of opportunities for people who develop dementia while still employed. Given the greater participation of older people in the workforce, findings highlight the importance of identifying and supporting workers with declining cognitive function.
We examined how caregivers experienced the influence of dementia on their relationships with afflicted family members. Family caregivers (n = 15; 11 women and four men; age 39–92 years) of people with dementia participated in semi-structured interviews. The data were analyzed according to Kvale and Brinkman. The analysis identified one overarching theme, experiences of companionship, and four subthemes, namely experiences of loss and loneliness; role change; communication alteration; and caring considerations and coping resources. The caregivers described their companionship with the family member, including warm feelings of reciprocity, as well as contradictory feelings, such as feelings of being burdened. They expressed a desire to continue caring for their relative and emphasized the positive aspects of their relationship. Knowledge about dementia, together with a good relationship with their ill family member, facilitated the caring role. These results highlight the importance of receiving information about dementia-related challenges and the implications of being a caregiver.
Effective home support in dementia is key in delaying nursing home admission. However, home support is frequently not tailored to the individual needs of people with dementia. Staff allocating home support services may not identify important care needs, which only be recognised by informal carers. The purpose of this study was to explore the balance of informal and formal home support and their associated costs from the perspectives of both informal carers and paid staff. Five case vignettes of people with dementia were designed based on an existing English data set from a European study into transition into long-term care (the RightTimePlaceCare programme), representing 42 per cent of the English sample. In total, 14 informal carers and 14 paid staff were consulted in separate groups, as expert panels, regarding their recommendations for home care services for each vignette. Care recommendations of carers and staff were costed based on nationally available unit costs and compared. Informal carers allocated fewer hours of care than staff. Personal and domestic home care and day care centres were the most frequently recommended formal services by both groups, and some vignettes of people with dementia were recommended for care home admission. The ratio of costs of informal versus formal support was relatively equal for paid staff, yet unbalanced from the perspectives of informal carers with a greater proportion of formal care costs. Recommendations from this study can help shape dementia care to be more tailored to the individual needs of people with dementia and their carers.
The aim of this study was to review the literature and critically analyse publications connecting cognitive impairment with postural stability.
Four electronic databases were searched. The inclusion criteria comprised the relation between the process of maintaining balance and cognitive impairment.
Of the 153 selected articles, 15 met the inclusion criteria. In 83% of publications, cognitive status was determined with the use of the Mini-Mental State Examination. In eight publications, postural stability was examined using force plates. Other methods used to test the balance were functional tests, i.e. the Berg Balance Scale or the Balance Evaluation Systems Test.
As the choice of methodology varies significantly, it is difficult to attempt an objective comparison between different studies. There is a clear need for the normalisation of methods used to assess the degree of dementia and to assess postural stability among this group of people.
Psychosocial interventions aim to mitigate the serious consequences of dementia for the daily life of people with dementia and their informal caregivers. To deliver a person-centred approach, it is crucial to take needs, characteristics and preferences of people with dementia and their informal caregivers into account. However, these factors are generally not systematically checked in order to determine which intervention will be most appropriate. Additionally, little is known about which intervention suits which needs, characteristics and preferences. Therefore, this study examined how three multiple-component, activating dyadic interventions fitted needs, characteristics, and preferences of both the people with dementia and their informal caregivers: the Pleasant Events Program, the Exercise and Support Intervention for People with Dementia and Their Caregivers, and Occupational Therapy. Semi-structured interviews were held with participants in either one of the interventions, 34 dyads and 19 professionals. The constant comparative method was used for the analysis. Five factors influenced the dyad’s ‘fit’: timing, need for activity, lifestyle, apart-or-together and meaning of (lost) activity. The factors ‘timing’ and a ‘need for activity’ were conditional for these activating interventions. Dyads in an early stage of dementia, who were aware of the effects on daily life, were open to a change in routine, and had a need to maintain activities profited from these interventions. Three distinctive factors were important for the fit of one of the three interventions in particular: ‘lifestyle’, ‘apart or together’ and ‘meaning of (lost) activity’. The Pleasant Events Programme and the Exercise and Support intervention properly addressed the need for activities that afforded daily pastimes or structure. The Exercise and Support Intervention addressed the need for physical activity and emphasized shared activity. Occupational Therapy properly addressed the need for self-sufficiency, maintaining activities and adjustment to physical limitations. These factors can contribute to a more person-centred application of the interventions.
Difficulty with everyday activities is a key symptom and defining feature of dementia, relating to subjective reports of well-being and overall quality of life. One way to support individuals in their daily activities is by modifying the physical environment to make it easier to interact with during activity performance. This systematic review explores the range of studies available using physical environmental strategies to support performance in everyday activities for people with dementia. Seventy-two relevant studies were identified by the search. Physical environmental strategies included changes to the global environment and to architectural features, use of moveable environmental aids and tailored individual approaches. Strategies supported general everyday activity functioning (N = 19), as well as specific activities, particularly mealtimes (N = 15) and orientation in space (N = 16); however, few studies were found that focused on aspects of personal care such as dressing (N = 1) and showering or the preferred hobbies of individuals (N = 0). Overall, there appeared to be a lack of research within private home environments, and of studies which specify the dementia syndrome or the whole neuropsychological profile of people with dementia. More work is needed to extend theoretical understandings of how people with dementia interact with their environments so that these spaces can be designed to further support activities of daily living performance. Future work in this field could also incorporate the perspectives and preferences of those living with dementia.
Using the capability approach initially developed by A Sen as a theoretical framework, this paper analyses both what people with dementia and their families do in response to difficulties in their daily life brought about by the disease, and the reasons they give for acting as they do. Individual and collective interviews and ethnographic observations with 15 persons with dementia and one or more of their family members were conducted. Follow-up interviews were possible for nine families. Results highlight a great diversity in ways of doing things and in accompaniment by family members. Daily adjustments are often hidden or minimized, at least at the onset of the dementia. Later, they become more frequent, repetitive and indispensable but remain influenced by the social and gender roles that existed prior to the illness. The inventiveness of families, in a context marked by various kinds of constraints, is primarily motivated by their desire to maintain the apparently intact abilities of the person with dementia but especially to preserve forms of liberty and what counted for the person, what that person valued before the disease. There are some ways of living with dementia, even when accompanied, which may long remain preferable to others, which better answer to the past and present aspirations of persons with dementia and the purposes of the accompanying persons. It is thus essential that health professionals, as well as society in general, recognize and address this issue.
An influential review in 2010 concluded that non-pharmacological multi-component interventions have positive effects on cognitive functioning, activities of daily living, behaviour and mood of people with dementia. Our aim here is to provide an up-to-date overview of research into psychosocial interventions and their impact on psychosocial outcomes. We focused on randomised controlled trials, controlled studies and reviews published between October 2008 and August 2015, since the earlier review. The search of PsychInfo, Medline and the Cochrane database of systematic reviews yielded 61 relevant articles, organised into four themes echoing key phases of the care pathway: Living at home with dementia (five reviews, eight studies), carer interventions (three reviews, four studies), interventions in residential care (16 reviews, 12 studies) and end-of-life care (three reviews, two studies), along with an additional group spanning community and institutional settings (six reviews, two studies). Community findings suggested that appointment of dementia specialists and attention to case management can produce positive outcomes; physical therapies, cognitive training and modified cognitive behaviour therapy also had a range of benefits. There was more limited evidence of positive benefits for people with dementia through interventions with family carers. Thirty-two articles focused on the management of ‘behavioural symptoms’ through a range of interventions all of which had some evidence of benefit. Also a range of multi-component and specific interventions had benefits for cognitive, emotional and behavioural well-being of people with dementia in residential settings, as well as for quality of life. Overall, interventions tended to be short term with impact only measured in the short term. We recommend further research on interventions to promote living well in the community post-diagnosis and to address end-of-life care. Development of psychosocial interventions would benefit from moving beyond the focus on control of behaviours to focus on wider aspects of life for people with dementia.
According to the dominant biomedical view, Alzheimer’s disease (AD) has a precise, necessary and unifying neurobiological cause, which distinguishes it from other neurodegenerative diseases and normal ageing. However, different types of evidence specifically lead to questioning the foundations of this essentialist and category-based approach to AD. It seems more and more evident that AD represents a heterogeneous state, determined by multiple factors and mechanisms that interact and intervene throughout life. This other way of conceiving AD not only requires a change of research objectives, but also a profound modification of clinical assessment and intervention practices. It also appeals to follow the path of prevention.
This qualitative UK study explored the lived experiences of volunteer befrienders to people with dementia, using interpretative phenomenological analysis. Individual semi-structured interviews were conducted with nine befrienders aged between 25 and 66 years. The relationship that developed between befriender and befriendee was at the heart of befrienders’ experiences. It comprised numerous paradoxical processes that generated issues of power, equality and boundaries, characterising befriending as a complex and unique phenomenon. Befriending was expressed as a deeply personal and human experience, often with emotional power and profound meaning. Befrienders’ personal learning included seeing past dementia stereotypes, challenging their own assumptions and boundaries, and reflecting on love, life and humanness. Dissemination of these findings could help to challenge the stigma around dementia, and enhance recruitment and support of dementia befrienders. Future research should consider befriendee experiences of the relationship, additional measures of befriending effectiveness, and exploration of befriender attrition and support.
It is estimated that a quarter of acute hospital beds are in use by older people with dementia at any one time. Little empirical research has been carried out that has specifically examined the day-to-day input of family members into the care of people with dementia during an acute hospital admission. In this article, we present the results of analysis of interviews with 26 family members of people with dementia about their experiences of supporting an admission of a person with dementia to an acute hospital unit in New Zealand. For all family members, the desire to support the person with dementia during their admission was at the forefront and was their primary focus. The theme, ‘And so I took up residence’, exemplifies fully the experiences of all of the family member participants. This study provides evidence that family members are a resource that may be unrecognised, untapped and unsupported in the event of hospitalisation of people with dementia.
The purpose of this qualitative study was to explore how physical and social environments influence spouses’ opportunities to maintain relationships when visiting a partner with dementia living in long-term care. Interviews with 15 spouses whose partners lived in long-term care facilities for persons with dementia, observations of physical environments and participant observations were conducted. The results showed how finding a place for spouses to connect in the long-term care facility was important in maintaining relationships. Access to individual rooms was an important feature that enabled connections throughout the phases of dementia, whereas common areas appeared more difficult to use because small spaces limited private interactions. Health personnel were important in sustaining spouses’ abilities to maintain their relationships in long-term care facilities for persons with dementia.
Research into the lived experiences of long-term care residents with dementia has identified perceived conflict, and its impact on sadness, as priorities for quality of life from the perspectives of people with dementia. However, whether and to what extent perceived conflict and sadness are associated has not been previously tested in this population. This study tested the associations between perceived conflicts with staff, family or friends and co-residents and their experience of sadness, and whether cognitive impairment or functional dependence modified these associations.
The study design was cross-sectional, correlational retrospective. Participants were 5001 residents of 613 long-term care facilities in Ontario, Canada with moderate and severe dementia. Clinical administrative data collected from 2012 to 2013 using the Resident Assessment Instrument 2.0 were used to measure the person's perception of conflicts with family/friends, staff, or co-residents, as well as verbal and non-verbal indicators of sadness. Hypotheses were tested using logistic regression, with cluster correction.
Sadness (adjusting for age, sex, family/friend contact, pain, cognitive impairment, and functional dependence) was positively associated with perceived conflicts with family or friends (OR 1.91; 95% CI 1.26–2.88; p = 0.002) and staff (OR 1.51; 95% CI 1.07–2.13; p = 0.020). These associations did not differ depending on the level of cognitive impairment or functional dependence. The association between co-resident conflict and sadness was statistically significant for people with moderate (OR 2.02; 95% CI 1.45–2.82; p < 0.001) but not for those with severe dementia (OR 1.18; 95% CI 0.72–1.91; p = 0.511).
Long-term care residents with dementia who perceive conflict with others require support to maintain high quality relationships, particularly with family and friends. Future research should rigorously assess the modifiability of perceived conflict for people with moderate and severe dementia, and whether interventions to ameliorate perceived conflict result in decreased sadness and improved quality of life.
The way we perceive and portray dementia has implications for how we act towards people with dementia and how we address the issue of dementia within society. As a multi-disciplinary working group, established within the framework of the European Dementia Ethics Network of Alzheimer Europe, we aimed to describe the different ways that people with dementia are perceived and portrayed within society and to consider the moral implications of this. In the current paper, we address perceptions of dementia as reflected in explanatory models of its cause and nature, descriptions of characteristics of people with dementia, the use of language, media portrayals and the views of people living with dementia. Academics and professionals could use this exploration to reflect on their behaviour and their use of language regarding people with dementia.
Individuals with dementia in the United States have higher rates of hospitalizations and emergency department visits compared to those without. This descriptive study examined the frequency of hospitalizations and emergency department visits among community-dwelling individuals with dementia, reasons for hospitalizations and emergency department visits, and caregivers’ actions to prevent these events. Family caregivers (n = 63) from education/support groups offered through Alzheimer’s Association chapters in western Ohio completed a survey. Twenty-two percent of caregivers reported that their care recipient stayed overnight in the hospital and 30% reported that their care recipient visited the emergency department at least once in the past three months. The most frequent reasons for hospitalization and emergency department visits, such as urinary tract infections and fall-related injuries, were potentially avoidable. Caregivers reported giving medications, seeking healthcare services, and obtaining home care services, as the most frequently used preventive actions. Family caregivers of individuals with dementia should be provided substantive education about preventable hospitalizations and emergency department visits.
Adopting principles of person-centred communication has been highlighted as one strategy to improve care of people living with dementia (PLWD) in health and social care settings. However, person-centred communication is interpreted and applied variably in different settings, and healthcare professionals’ views about communicating with PLWD are under-explored. This study aimed to investigate medical students’ views about the principles and applicability of a model of person centred communication – the Dementia Model of Effective Communication (DeMEC) – to clinical practice. Quantitative and qualitative data was collected using questionnaires (n = 531), focus groups (n = 21) and interviews (n = 10). Students generally endorsed the person-centred approach to communication, but two aspects were highlighted as complex and divisive – the acceptability or otherwise of lying, and of communicating with family in advance of the PLWD. We discuss the nature of these communicative dilemmas, implications for the education and training of medical students, and future directions for research.
Because of the age of persons diagnosed with younger-onset Alzheimer's disease or other dementias (YOD), an important and as yet relatively little explored area of YOD, particularly in the United States, is the impact on young children of having a parent with YOD. After reviewing the small but growing research in this area, we report on findings from 12 in-depth interviews with children and well-parents in families with a parent with YOD on the experience and needs of children having a parent with this diagnosis. Children report disruption in many aspects of their lives: their developmental trajectory, emotional and psychological development, familial and broader social relationships, and financial stability. Despite these significant disruptions, and a dearth of information, resources, and services tailored to their individual and familial needs, these children demonstrate remarkable resilience and self-awareness. We discuss implications for interventions with these families.
Most studies that enroll individuals with dementia require a study partner for each participant. Study partners—usually family members—perform several key roles: accompanying the participant to visits, providing information about the participant, and assisting with procedures such as taking medication. Little is known, however, about their experiences when performing these roles. Dementia researchers and institutional review boards need to know these experiences because the study partner role is one key factor in a study’s success. This prospective qualitative study, using up to three semi-structured interviews with 62 study partners involved in a range of dementia studies, documented their subjective experiences. Content analysis demonstrates that study partners perform a range of tasks—often within the context of being a caregiver—that enable cognitively impaired individuals to participate in dementia research. These tasks present study partners with unique burdens and benefits, some of which dementia researchers and institutional review boards can address.
Communication about risk is central to decisions in dementia care. This review synthesises research on risk concepts and communication in dementia. Twelve bibliographic databases and one online search engine were searched up to February 2016. Reference lists of two related literature reviews were used. Thirty-four articles were identified that focused on risk concepts; two articles related to risk communication. Concepts were often socially constructed, and perceptions may differ from actual adverse outcomes. Perceptions of risk and thresholds of risk-tolerance varied between individuals with dementia, carers and professionals. Individuals with dementia were found to behave differently from controls when making decisions involving risk information in experimental settings. Cognitive impairment was also associated with lower health numeracy. These findings highlight the importance of communication between stakeholders when making decisions and of presenting information in an appropriate way to support informed and positive risk taking. Research is required on risk communication in dementia.
The subjective experience of dementia for lesbian and gay individuals is largely absent from the extant literature. This study aimed to explore what it means to experience dementia in this context given the documented psychosocial influences facing this population. A second aim was to develop understanding of these experiences within dyadic relationships.
Ten semi-structured interviews were conducted with lesbian and gay individuals with dementia and people with whom they had a significant relationship and analysed using interpretative phenomenological analysis.
Three superordinate themes, reflecting characteristics of participants’ experience, were identified: duality in managing dementia, giving yourself away vs. holding onto yourself and relationships as sheltered harbours. Ten subthemes indicated the processes that were adopted to adjust and make sense of the experience of dementia. These included decisions around concealment, ensuring safety and the promotion of personhood and couplehood. In line with findings for heterosexual couples, partners had an important role in maintaining the identity of the person with dementia.
Results suggest additional and distinct challenges, including experienced and perceived discrimination and heterosexism. In response to these conditions, interviewees worked to resist a ‘double stigma’ of dementia and sexuality. Findings indicated areas of improvement for dementia services, including training in inclusive practice.
This focus group study explored experience of Korean American personal care aides caring for older Korean Americans with dementia symptoms. Personal care aides described dementia caregiving as challenging, demanding and stressful, yet they cared for their clients with love and affection, particularly with jeong (i.e., a Korean cultural concept of love, affection, sympathy, and bondage). They learned about dementia mostly through their caregiving experience and expressed their need and strong desire to learn more about dementia. They felt for family struggle and observed family conflict and filial obligation. They advocated the value of personal care aides’ involvement in dementia care. This study revealed a pressing need for dementia training for personal care aides and called for an outreach effort to recruit and train direct care workers with potential of providing culturally competent care for traditionally underserved ethnic minorities.
There is limited research on what family members and frontline care home staff consider to be the best responses to the sexual expression of a person with dementia, whilst at the same time respecting relatives’ feelings, managing their possible distress and conflict.
This exploratory study investigated the views of relatives and care workers of new relationships or sexual intimacy between care home residents with dementia, whilst still married to another person. It reports the themes that emerged in qualitative interviews with eight relatives of people with dementia and with 12 frontline care home staff working in two English care homes. Interviews took place in 2015 using a hypothetical vignette that unfolded in four stages. Thematic analysis was used to analyse the data.
The views of care home staff and relatives had similarities in general terms regarding the problems arising around expressions of sexuality in care homes: indicting that a light-hearted or non-physical connection between residents is deemed acceptable, but the moment it becomes a sexual relationship then decision making becomes more complicated. Staff were inclined to turn to managers for advice and to consider separating residents. They expressed familiarity with distracting residents from situations that were of concern. Relatives were considerate of the difficulties and dilemmas faced by care home staff.
The use of a vignette facilitated discussion of a potentially sensitive topic. Areas for further research are identified.
Moral distress is increasingly being recognized as a concern for health care professionals. The purpose of this study was to explore the nature and prevalence of moral distress among nursing staff who care for people living with dementia.
This study was focused on nursing staff caring for people with dementia in long-term care and assisted living sites. The Moral Distress in Dementia Care Survey instrument was distributed to 23 sites and nursing staff rated the frequency and severity of situations that were identified as potentially causing moral distress.
Moral distress is prevalent in the nursing staff who provide dementia care. Nursing staff reported experiencing moral distress at least daily or weekly. Both frequency and severity of moral distress increased with proximity to (amount of time spent at) the bedside. Moral distress had negative psychological and physiological effects on nursing staff, and affected intention to quit.
RemoDem aimed to develop, test and evaluate services for people with dementia in remote areas of the Faroe Islands, Greenland, Sweden and Scotland. Formative and summative evaluation used a flexible research design including collection of baseline data, interviews and focus groups with key informants and data relating to service users, i.e. people with dementia and their carers. Challenges for service providers included organisational difficulties, lack of clear information about their populations with dementia and lack of knowledge in local communities. Test sites which developed services building on their particular local starting points adopted both specialist and ‘off the shelf’ technologies and found that these were generally helpful for people with significant support needs. The flexible research design was found to be essential in the real world conditions of the service development and evaluation. Services were more successful where more mature and less experimental technologies were used. The new services promised to address effectively challenges of remoteness including distance, communication and workforce deployment issues.
This paper reports on the challenges associated with implementing and evaluating an innovative pilot music and movement project. The evaluation documents that participants enjoyed the sessions and that they created the opportunity for social engagement although there is little to suggest this is unique to this particular type of intervention. Difficulties included matching the programme to the needs of participants, communicating effectively, and over burdensome paperwork. The paper also comments on the challenges associated with last minute, limited funding opportunities for both the organisation commissioning a project and the team evaluating it. In this case, the evaluation team found that many of the more difficult issues associated with the pilot could have been resolved with more time for planning and preparation.
Fourteen people attending an adult day programme were recruited to a structured horticultural therapy programme which took place over 10 weeks. The effects were assessed using Dementia Care Mapping and questionnaires completed by family carers. High levels of wellbeing were observed while the participants were engaged in horticultural therapy, and these were sustained once the programme was completed. This study adds to the growing evidence on the benefits of horticultural therapy for people with dementia who have enjoyed gardening in the past.
The incidence of behavioural and psychological symptoms of dementia in residential aged care facilities is high. Effective team work and knowledgeable staff are cited as important facilitators of appropriate care responses to clients with these symptoms, but to achieve this within a resource-poor workplace can be challenging. In the study reported in this paper, concept mapping was trialled to enhance multifocal person-centred assessment and care planning as well as team learning. The outcomes of team concept mapping were evaluated using a quasi-experimental design with pre- and post-testing in 11 selected Australian residential aged care facilities , including two control residential aged care facilities , over a nine-month period. It was demonstrated that use of concept mapping improved team function, measured as effectiveness of care planning, as well as enhancing learning, with increased knowledge of dementia care even amongst staff who were not directly involved with the process. It is suggested that these results may be generalizable to other countries and care settings.
When people with dementia are admitted to hospital, both they and their carers and families have crucial roles to play. They should be positioned as the only true experts in the unique individuality of the person and brought into the nursing process as an equal partner in care. ‘Care to Talk’ is a conversational model developed through Appreciative Inquiry to facilitate this way of working. The model, its development and outcomes are discussed.
Peer support for people with dementia and carers is routinely advocated in national strategies and policy as a post-diagnostic intervention. However there is limited evidence to demonstrate the value these groups offer. This study looked at three dementia peer support groups in South London to evaluate what outcomes they produce and how much social value they create in relation to the cost of investment.
A Social Return on Investment (SROI) analysis was undertaken, which involves collecting data on the inputs, outputs and outcomes of an intervention, which are put into a formula, the end result being a SROI ratio showing how much social value is created per £1 of investment.
Findings showed the three groups created social value ranging from £1.17 to £5.18 for every pound (£) of investment, dependent on the design and structure of the group. Key outcomes for people with dementia were mental stimulation and a reduction in loneliness and isolation. Carers reported a reduction in stress and burden of care. Volunteers cited an increased knowledge of dementia.
This study has shown that peer groups for people with dementia produce a social value greater than the cost of investment which provides encouraging evidence for those looking to commission, invest, set up or evaluate peer support groups for people with dementia and carers. Beyond the SROI ratio, this study has shown these groups create beneficial outcomes not only for the group members but also more widely for their carers and the group volunteers.
The number of people around the world living with dementia is predicted to rise from 44 million to 135 million by 2050. Traditional treatments for dementia have been largely unsuccessful and prompted the emergence of alternative strategies. Music is emerging as an effective therapeutic strategy for older adults with dementia however, most of the work to date has focused on institutions. The purpose of this scoping review was to summarize what is known about the role and impact that music plays in the lives of community-dwelling older adults with dementia. Using a five-stage framework for conducting a scoping review, analysis revealed three ways in which music influences the lives of community-dwelling older adults with dementia: (a) reduced agitation, (b) improved cognition, and (c) enhanced social well-being. The concept of personhood provided a lens with which to conceptualize the findings and highlights the need for continued research.
Psychosocial approaches to the management of behavioural and psychological symptoms of dementia have received much support in the scientific literature. The following paper focuses on cognitive behaviour therapy as a valid framework in assessing and treating people with behavioural and psychological symptoms of dementia. The importance of identifying symptoms of depression and anxiety is emphasized, as cognitive behaviour therapy has been shown to be an effective intervention for these conditions in older adults. Modifications of cognitive behaviour therapy for those with dementia are discussed based on available evidence, with emphasis on incorporating nursing home staff in treatment programs and focusing on behavioural elements of cognitive behaviour therapy such as activity scheduling. The paper concludes with suggestions regarding how to incorporate and promote the use of cognitive behaviour therapy in dementia care settings.
There are approximately 150 Admiral Nurses in the UK who work alongside other health and social care professionals to support people with dementia and their family carers. However, the stigma of the disease and the lack of recognition that dementia is a life limiting illness have led to neglect in addressing the end of life challenges. The small in-depth study reported here aimed to add to an extremely limited formal evidence base for the effectiveness of this approach and to develop a greater understanding of the range of knowledge and skills required of them in ensuring they are better able to support families in the later stages of the illness. Findings focus on the experiences of family carers, the impact of performing the Admiral Nurse role and the use of qualitative measures in this setting.
The ‘dementia friends’ programme was launched by the Alzheimer’s Society in the UK two years ago with the purpose of educating members of the public about the things they can do which can enhance the lives of people living with dementia. The aim of this project was to deliver a two-hour ‘Dementia Friendly Community Workshop’ written by the Alzheimer’s Society, to an entire cohort of first-year undergraduate nursing students in one Higher Education Institutions in Northern Ireland. Following delivery of the programme, students were asked to complete a short questionnaire on their knowledge and confidence in relation to dementia care before and after the Dementia Friendly Community programme. A total of 322 undergraduate first-year nursing students took part in the Dementia Friendly Community programme. Of these, 304 returned questionnaires; 31.25% of students stated their perceived improvement in dementia knowledge was ‘good’ while 49.01% stated their perceived improvement in dementia knowledge was ‘very good’ and 13.49% stated their perceived improvement in dementia knowledge was ‘excellent’. In relation to confidence in engaging with people with dementia, 31.91% stated ‘good’ improvement, 40.79% stated ‘very good’ improvement and 11.84% stated ‘excellent’ improvement. The Dementia Friendly Community programme was positively reviewed by the undergraduate students as it enhanced knowledge and confidence in relation to care of someone living with dementia.
This research used auto/biographical interviews to explore the experiences of 19, 8 to 31 year olds who had a parent with dementia. Thematic analysis revealed challenges occasioned by the master narrative that people with dementia are ‘still’ the same person they were prior to the onset of their condition. While this notion is – rightly – at the heart of person-centered care in dementia services, the ‘still’ discourse conflicts with the experiences of young people. Their accounts suggest that the construction of their parent as the same person is not helpful and that, furthermore, expectations that they will behave and feel towards that parent as they did before are a source of distress in what is already a challenging situation. This paper highlights the need to equip young people with support that acknowledges that their parent may well be drastically different to the Mum or Dad they previously ‘knew’.
Recognizing the economic and health-outcome value of early cognitive assessment and intervention among its older citizens has guided the Innovative Research School in Gerontology of the SD Asfendiyarov Kazakh National Medical University to begin the process of establishing its nation’s first memory center in Almaty, Kazakhstan. Life expectancy in Kazakhstan, which continues to undergo health-care reform since its independence in 1991 from the former Soviet Union, has steadily risen from 64.4 years in 1996 to 68.67 in 2009. With increased life expectancy has been a corresponding rise in cognitive impairments among older adults. The components of the Memory Center, which comprises assessment, education and support, non-pharmaceutical and pharmaceutical interventions, are described.
People with advanced dementia are frequently bed-bound, doubly incontinent and able to speak only a few words. Many reside in care homes and may often have complex needs requiring efficient and timely response by knowledgeable and compassionate staff. The aim of this study is to improve our understanding of health care professionals’ attitudes and knowledge of the barriers to integrated care for people with advanced dementia. In-depth, interactive interviews conducted with 14 health care professionals including commissioners, care home managers, nurses and health care assistants in the UK. Barriers to care for people with advanced dementia are influenced by governmental and societal factors which contribute to challenging environments in care homes, poor morale amongst care staff and a fragmentation of health and social care at the end of life. Quality of care for people with dementia as they approach death may be improved by developing collaborative networks to foster improved relationships between health and social care services.
This study explores how manners of mediation, and the use of embodiment in interpreter-mediated conversation have an impact on tests of cognitive functioning in a dementia evaluation. By a detailed analysis of video recordings, we show how participants—an occupational therapist, an interpreter, and a patient—use embodied practices to make the tasks of a test of cognitive functioning intelligible, and how participants collaboratively put the instructions of the tasks into practice. We demonstrate that both instructions and instructed actions—and the whole procedure of accomplishing the tasks—are shaped co-operatively by embodied practices of all three participants involved in the test situation. Consequently, the accomplishment of the tasks should be viewed as the outcome of a collaborative achievement of instructed actions, rather than an individual product. The result of the study calls attention to issues concerning interpretations of, and the reliability of interpreter-mediated tests and their bearings for diagnostic procedures in dementia evaluations.
The aims were to evaluate a second phase roll-out of a dementia care training programme for general hospital staff and to further develop two outcome scales: the Confidence in Dementia scale for measuring confidence in working with people with dementia and the Knowledge in Dementia scale for measuring knowledge in dementia.
Following a ‘training the trainers’ phase, the study involved the delivery of the ‘Getting to Know Me’ training programme to a large number of staff (n = 517) across three National Health Service (NHS) Trusts situated in North-West England. The impact of the programme was evaluated using a pre–post design which explored: (i) changes in confidence in dementia, (ii) changes in knowledge in dementia, and (iii) changes in beliefs about behaviours that challenge.
Statistically significant change was identified between pre–post training on all outcome measures (Confidence in Dementia: eight point increase, p < 0.001; Knowledge in Dementia: two point increase p < 0.001; controllability beliefs scale: four point decrease, p < 0.001). Medium to large effect sizes were demonstrated on all outcome measures. The psychometric properties of the Confidence in Dementia and Knowledge in Dementia scales are reported.
Staff knowledge in dementia and confidence in working with people with dementia significantly increased following attendance at the training sessions. The findings are consistent with preliminary findings and strengthen current knowledge about the impact of dementia care training in general hospitals. The Confidence in Dementia and Knowledge in Dementia scales continue to demonstrate psychometrically sound properties and demonstrate utility in the field of dementia research.
Regression to mother tongue is common in those with dementia. In two long-term care facilities, we explored the use of bilinguals’ two languages for five older adults with mild-moderate dementia who have begun to regress to Greek. We also examined the role of Montessori DementiAbility Methods: The Montessori Way-based English language activities in fostering conversational use of English. Over 10 sessions, participants’ vocabulary or grammatical structure in English did not improve. However, four of the five participants were able to maintain a conversation in English for longer periods of time. This study contributes to strategies for optimizing meaningful conversation for bilingual long-term care residents with dementia. Moreover, the data suggest a change in the policy and practice for dementia care so that there are more opportunities for residents to speak English in non-English mother-tongue facilities. Greater attention to the specific language needs of bilinguals in English-dominant settings would also be advisable.
Appreciative Inquiry is an approach to organisational change that has been effective and popular around the world for the past two decades. What could it have to offer us as an alternative to traditional ‘behaviour management’? Traditionally, in modern dementia care, we take a psychiatric approach to the range of actions that people engage in when stressed or traumatised by the cognitive, social and psychological losses associated with dementia. We call them symptoms of an illness – Behavioural and Psychological Symptoms of Dementia. Then, we medicate them away because if they are symptoms then medical solutions are called for. We may obtain a better outcome from a different direction. Appreciative Inquiry focuses on an organization as a ‘solution designed in its own time to meet a challenge or satisfy a need of society’. This approach focuses on what is working well and is effective in organisations rather than seeing the organisation as a problem to be solved. In this way, we may approach the individual person as a solution designed in its own time to meet a challenge or satisfy a need. Using the 4Ds of the Appreciative Inquiry approach, this article examines the process of Discovery, Dream, Design and Destiny, as it is applied to a case example of a care situation that usually ends with disruption and distress. By formulating affirmative topic choices, the staff group and individual carers may resolve issues with what people with dementia do or say in a way that is humane and hopeful.
To obtain insight into facilitating factors for case management in dementia care, we conducted a qualitative study with 13 online focus groups (OFGs). Participants were professionals involved in dementia case management (N = 99). We used mind-maps and the method of constant comparison for analysis. Participants perceived OFGs as a useful tool to explore their perspectives. The perceived advantage of OFGs was the flexibility and convenience of logging in at any time or place preferred. Five facilitating factors for case management were identified in the OFGs: 1. Good cooperation between partners; 2. Organisational embedding with an independent position of case managers; 3. Structural funding; 4. Competent case managers; 5. Familiarity with case management in the region. Good cooperation was essential for successful dementia case management and should thus be a primary concern for care providers.
Efforts to combat ageism typically focus on negative attitudes toward members of an out-group. Changing attitudes also requires assessment and enhancement of positive attitudes. This study examined the psychometric properties of Allophilia scale when used to measure college students' positive attitudes toward persons with dementia. Data collected from 465 students were analyzed using confirmatory factor analysis and multigroup analysis by gender to assess the validity and reliability of the Allophilia scale. Results showed that the Allophilia scale is valid both for male and female students. The Allophilia scale is a valid assessment tool for measuring positive attitudes toward persons with dementia. Use of this scale will contribute to our understanding of attitudes toward persons with dementia and has implications for the design of interventions to facilitate positive attitudes toward members of this out-group.
A caregiver’s attachment history with their parents may affect the thoughts, feelings, and behavior they now have as they care for a parent with dementia. Participants were 77 daughters of a parent with dementia. The nature of participant conscious episodic memories of their parental figures and unconscious procedural knowledge of caregiving processes (secure base script knowledge) were identified as two aspects of the caregiver’s relationship history that may impact their involvement in care, relationship conflict, critical attitudes, and strain. Our findings indicated that the nature of episodic memories of the caregiver relationship history with parental figures were significantly associated with stress and criticism of their parent. Greater unconscious procedural knowledge of the secure base script was associated with caregiver report of less conflict and less involvement in the caregiving tasks. Potential clinical implications of this pattern are also discussed.
The conceptualisation and development of the role of Dementia Champions in clinical practice is ongoing, and dementia specific training has a significant impact on the scope of the role.
This survey aimed to elicit Dementia Champions’ views on their role and associated training needs.
Data were collected via an online survey.
Of 188, 34 Dementia Champions (response rate 18%) participated. Most perceived dementia awareness training as useful, but limited. Areas suggested for further development were context specific skills training, education programmes that were formally recognised, and clarification around the expectations of the role.
Expectations of ‘champion roles’ in dementia need to be re-visited, specifically in relation to the remit of the role and the level of education, preparation and support required for Dementia Champions to become change agents in dementia care.
This research aimed to ascertain the impact of a pragmatic Cognitive Stimulation Therapy course of 10 sessions on the cognitive function of people living with dementia and whether attending a concomitant carers support group was beneficial to carers. A mixed method quasi-experimental approach was adopted; data were collected pre- and post-intervention. The quantitative arm utilised three validated questionnaires rated by the carers. Qualitative data were collected via semi-structured interviews with carers regarding their perceptions of the impact of Cognitive Stimulation Therapy and the carers support group. Quantitative data analysis found no statistically significant differences within or between groups. The qualitative data demonstrated that carers perceived Cognitive Stimulation Therapy had some benefits for the people living with dementia, especially social benefits. Carers also perceived that attending the carers support group was beneficial for them in terms of gaining a better understanding of dementia, developing coping skills and having peer support. The study was limited in scale and further research with a larger sample, using direct measures of the impact of Cognitive Stimulation Therapy with people living with dementia and supplementary research exploring which characteristic of carers support groups are effective would be worthwhile.
Drawing on therapeutic physical environmental design principles and Kitwood’s theoretical view of person-centered care, this study examined the impact of environmental renovations in dining spaces of a long-term care facility on residents’ mealtime experience and staff practice in two care units.
The research design involved pre- and post-renovation ethnographic observations in the dining spaces of the care units and a post-renovation staff survey. The objective physical environmental features pre- and post-renovations were assessed with a newly developed tool titled Dining Environment Audit Protocol. We collected observational data from 10 residents and survey responses from 17 care aides and nurses.
Based on a systematic analysis of observational data and staff survey responses, five themes were identified: (a) autonomy and personal control, (b) comfort of homelike environment, (c) conducive to social interaction, (d) increased personal support, and (e) effective teamwork.
Although the physical environment can play an influential role in enhancing the dining experience of residents, the variability in staff practices reveals the complexity of mealtime environment and points to the necessity of a systemic approach to foster meaningful culture change.
Behavioural and psychological symptoms of dementia are often the reasons for moving to a care home. Care staff, often with limited dementia training, may have to support residents with distressed behaviour on a daily basis. Evidence about the support of residents with distressed or challenging behaviour in the South African context is lacking. This exploratory study aimed to gain an understanding of what care home staff perceived to be distressed behaviour, their coping strategies and how they learned to work with residents with behavioural symptoms of dementia.
An exploratory study was conducted among 17 participants working in four care homes in the Western Cape province of South Africa in 2014. Semi-structured interviews were audio-recorded. Data were analysed thematically.
Findings reflected the literature with regard to examples of behavioural symptoms of people with dementia that staff find challenging to manage. Overall, the majority of staff reported holding positive feelings about working with people with dementia. All preferred interpersonal approaches to manage distressed behaviour above medication although a small minority noted the use of medication in some cases. Dementia training was considered by most participants as an unmet need.
This exploratory study identified care home workers’ desires for training about dementia and their preferences for interpersonal as opposed to pharmacological approaches to managing residents’ distressed behaviour. The legacy of race and cultural perspectives in South Africa appears to still influence care practice and provision. Staff commitment, their interest in advancing their practice and their aspirations to offer more person-centred care were evident. Dementia training was identified as potentially helpful to care home staff who manage residents’ distressed behaviour. Training should be developed in South Africa to promote good practice.
Montessori-based activities use a person-centred approach to benefit persons living with dementia by increasing their participation in, and enjoyment of, daily life. This study investigated recreation staff and multidisciplinary consultants’ perceptions of factors that affected implementing Montessori Methods for Dementia™ in long-term care homes in Ontario, Canada. Qualitative data were obtained during semi-structured telephone interviews with 17 participants who worked in these homes. A political economy of aging perspective guided thematic data analysis. Barriers such as insufficient funding and negative attitudes towards activities reinforced a task-oriented biomedical model of care. Various forms of support and understanding helped put Montessori Methods for Dementia™ into practice as a person-centred care program, thus reportedly improving the quality of life of residents living with dementia, staff and family members. These results demonstrate that when Montessori Methods for Dementia™ approaches are learned and understood by staff they can be used as practical interventions for long-term care residents living with dementia.
Research literature in the dementia field lacks examples of ‘best-practices’ demonstrating concretely how it is possible to support the sense of coherence in people with dementia. The purpose of this study was to elucidate the nurses’ views concerning a caring approach that may support the sense of coherence in people with dementia. The data were collected through participant observation and focus group interviews during a four-month period in 2011. Sixteen registered nurses recruited from two Norwegian nursing homes participated in this study. The data were interpreted using a phenomenological-hermeneutical method. Three themes were identified: ‘being in the moment’, ‘doing one thing at a time’, and ‘creating joy and contentment’. An overall interpretation of these themes is described by the metaphor ‘slow nursing’, a caring approach that may lead to supporting the sense of coherence in people with dementia.
The aim was to analyze the risk of hip fracture in German primary care patients with dementia. This study included patients aged 65–90 from 1072 primary care practices who were first diagnosed with dementia between 2010 and 2013. Controls were matched (1:1) to cases for age, sex, and type of health insurance. The primary outcome was the diagnosis of hip fracture during the three-year follow-up period. A total of 53,156 dementia patients and 53,156 controls were included. A total of 5.3% of patients and 0.7% of controls displayed hip fracture after three years. Hip fracture occurred more frequently in dementia subjects living in nursing homes than in those living at home (9.2% versus 4.3%). Dementia, residence in nursing homes, and osteoporosis were risk factors for fracture development. Antidementia, antipsychotic, and antidepressant drugs generally had no significant impact on hip fracture risk when prescribed for less than six months. Dementia increased hip fracture risk in German primary care practices.
Two-thirds of people with dementia reside in their own homes; however, support for community-dwelling people with dementia to continue to participate in everyday activities is often lacking, resulting in feelings of depression and isolation among people living with the condition. Engagement in outdoor activities such as gardening can potentially counteract these negative experiences by enabling people with dementia to interact with nature, helping to improve their physical and psychological well-being. Additionally, the collaborative nature of community gardening may encourage the development of a sense of community, thereby enhancing social integration. Despite increasing evidence supporting its therapeutic value for people with dementia in residential care, the benefits of horticultural therapy have yet to be transposed into a community setting. This paper will examine the theoretical support for the application of horticultural therapy in dementia care, before exploring the potential of horticultural therapy as a means of facilitating improved physical and psychological well-being and social integration for people living with dementia within the community.
The aim of this study was to identify factors associated with family resilience in families caring for a parent with dementia. A mixed-methods approach was followed to collect data from a convenience sample drawn from the Cape Metropolitan area in the Western Cape, South Africa. The study sample comprised 47 families in which adult children were caring for a parent with dementia. The quantitative data analysis was conducted using analyses of variance (ANOVA), Pearson’s product–moment correlation coefficients and a best-subsets multiple regression analysis. Qualitative data were analysed using thematic content analysis. It was found that acceptance, optimism, positive communication patterns, family connectedness, spirituality, social support, economic resources and the effective management of symptoms helped these families adapt to the burdens of dementia care. In addition to expanding the literature regarding family resilience, the findings could be used to develop interventions tailored to the needs of these families caring for a parent with dementia to create a family environment that enhances adjustment and adaptation.
This study examined predictors of medication administration hassles reported by intergenerational dementia family caregivers.
A sample of 53 women who aided a cognitively impaired older adult with healthcare and who identified as inter-generational caregivers provided self-report medication management and psychosocial data.
Hierarchical multiple regression analyses revealed that six independent variables hypothesized for this model, the total number of prescription medications managed by caregivers, educational attainment, care-recipient functional impairment, care-recipient cognitive impairment, caregiver depressive symptomatology, and self-reported feelings of preparedness for the caregiving role together significantly predicted caregiver medication administration hassles scores F(1, 48) = 4.90, p = .032, and accounted for approximately 25% of the variance of self-reported hassles (adjusted R2 = .247).
Future interventions may reduce medication-related hassles by providing psychoeducation about healthcare, medication management, and strategies for coping with care-related stressors and depressed mood.
To develop, deliver, and evaluate dementia-specific training designed to inform service delivery by enhancing the knowledge of community-based service providers.
This exploratory qualitative study used an interdisciplinary, interuniversity team approach to develop and deliver dementia-specific training. Participants included management, care staff, and clients from three organizations funded to provide services in the community. Data on the acceptability, applicability, and perceived outcomes of the training were gathered through focus group discussions and individual interviews. Transcripts were analyzed to generate open codes which were clustered into themes and sub-themes addressing the content, delivery, and value of the training.
Staff valued up-to-date knowledge and "real stories" grounded in practice. Clients welcomed the strengths-based approach. Contractual obligations impact on the application of knowledge in practice.
The capacity to implement new knowledge may be limited by the legislative policies which frame service provision, to the detriment of service users.
Communication is one of the areas where people with dementia and their caregivers experience most challenges. The purpose of this study is to contribute to the understanding of possibilities and pitfalls of using personalized communication applications installed on tablet computers to support communication for people with dementia and their conversational partners. The study is based on video recordings of a woman, 52 years old, with Alzheimer’s disease interacting with her husband in their home. The couple was recorded interacting with and without a tablet computer including a personalized communication application. The results from the present study reveal both significant possibilities and potential difficulties in introducing a digital communication device to people with dementia and their conversational partners. For the woman in the present study, the amount of interactive actions and the number of communicative actions seem to increase with the use of the communication application. The results also indicate that problems associated with dementia are foregrounded in interaction where the tablet computer is used.
Dementia commonly leads to difficulties in performing daily activities, which can also often affect the ability to prepare and eat meals. As a result, formal support to maintain good nutritional intake might be needed, but there is a lack of knowledge concerning how to support older persons with dementia living at home. The aim of this study was to explore and describe staff views on how to improve mealtimes for persons with dementia who are still living at home. A qualitative descriptive study was performed and data were collected during 2011–2012 through four focus group interviews with staff working in the homes of persons with dementia. Data were analyzed using inductive content analysis. The participants described several ways to improve mealtimes for persons with dementia and advocated adjustments facilitating the preservation of the persons’ independence. Finding suitable actions calls for knowledge about the person and his/her individual situation. Proposed actions were enabling meals at home, taking over, and moving meals outside of the home. In addition, it was found that, the types of meals served to these persons should be as familiar to the individual as possible. The results of this study indicate the importance of using a person-centered approach and meeting the individual needs when supporting people with dementia in regards to their meals when living at home. Individualized care in the home may be expensive, however, it is fair to say that people who become malnourished and admitted to hospitals is even more costly. Furthermore, sharing and reflecting experiences and knowledge can assist staff to identify ways to manage complex situations. Therefore, the use of refection should be a part of staff members’ everyday work.
The World Health Organization estimates the number of people living with dementia at approximately 35.6 million; they project a doubling of this number by 2030 and tripling by 2050. Although the majority of people living with a dementia live in the community, residential facility care by nursing care providers is a significant component of the dementia journey in most countries. Research has also shown that caring for persons with dementia can be emotionally, physically, and ethically challenging, and that turnover in nursing staff in residential care settings tends to be high. Moral distress has been explored in a variety of settings where nurses provide acute or intensive care. The concept, however, has not previously been explored in residential facility care settings, particularly as related to the care of persons with dementia. In this paper, we explore moral distress in these settings, using Nathaniel’s definition of moral distress: the pain or anguish affecting the mind, body, or relationships in response to a situation in which the person is aware of a moral problem, acknowledges moral responsibility, makes a moral judgment about the correct action and yet, as a result of real or perceived constraints, cannot do what is thought to be right. We report findings from a qualitative study of moral distress in a single health region in a Canadian province. Our aim in this paper is to share findings that elucidate the sources of moral distress experienced by nursing care providers in the residential care of people living with dementia.
The purpose of this study was to create a path model linking cognitive functioning in individuals with dementia, caregiver burden and mental health, and quality of care provided for the individual with dementia in Argentina. One hundred and two dementia caregivers from San Lucas, Argentina completed questionnaires assessing these constructs. Regressions found that caregiver burden, depression, anxiety, and satisfaction with life explained 18.8% of the variance in quality of care—respect and 14.7% of the variance in quality of care—provide. A structural equation model with generally adequate fit indices uncovered that cognitive functioning in individuals with dementia was inversely associated with caregiver burden, caregiver burden was inversely associated with mental health, and mental health was positively associated with quality of care. Further, patient cognitive functioning yielded a significant indirect effect on caregiver mental health through caregiver burden, as did burden on quality of care through mental health. Despite this negative cascade, these relationships may also be reversed with the development and use of dementia caregiver interventions that improve caregiver burden and mental health and as a result, the quality of care for individuals with dementia in Latin America.
Little research has explored how not-for-profit housing providers, often termed Housing Associations in the United Kingdom, meet the needs of older tenants with dementia who are from black and ethnic minority communities. This article presents findings from an exploratory study conducted in 2015. The study took an audit approach, investigating current practice and policy in 12 Housing Associations. All were developing their understanding of dementia; some were augmenting their standard rented property portfolio to include housing with care provision; and most had policies relating to equalities and diversity and were offering dementia training to members of staff. None appeared to have fully integrated the three strands of housing services, dementia care, and cultural or ethnicity-related needs and preferences. A range of strategies was reported as being developed to meet tenants’ changing circumstances. Anxiety about the cost of adaptations was commonly reported, although the nature and extent of this were ill-defined. Discussion focuses on the findings’ implications for housing providers and for dementia professionals.
This paper focuses on the evaluation of dementia case management in the Netherlands, as well as factors associated with positive evaluations of informal caregivers. A survey was completed by 554 informal carers. The majority of the informal carers were older (69% was 55+), and female (73%), and often concerned the partner or adult children of the person with dementia. Eighty percent indicated that the contact with the case manager facilitated their role as informal carer, while 95% or more stated that the case manager showed sufficient understanding, allowed enough space to decide together on how to approach problems in the care, took time to listen to their story, gave sufficient attention to and showed interest in their relative, took their schedule into account and/or kept appointments. Contrary to the expectations, multilevel analyses did not show association between informal caregivers’ care burden and the evaluation of case management. Neither were the period living with dementia and the number of personal contacts with the case manager associated with the evaluations of informal caregivers. However, being the partner of the patient was significantly related (p < 0.05) to a positive overall evaluation by informal carers. These results suggest that sufficient case management resources should be offered and targeted especially towards partners of people with dementia.
The movement of people with dementia in long-term care continues to be an issue of concern among clinicians, caregivers and families. This article will examine the social construction "wandering" and its association with pathology, risk discourse and surveillance technologies. Further, the article will explore the recent shift from the term "wanderer" to the phrase "people who like to walk" in person-centred dementia care. Engaging with Ingold’s concept of movement as wayfaring, an alternative becoming-centred understanding of movement and its significance for people with dementia will be presented and illustrated through a case study. The paper concludes that depathologizing movement opens the possibility to see movement in people with dementia as an intention to be alive and to grow, rather than as a product of disease and deterioration. Suggestions for future research and implications for care interventions are discussed.
Depression, agitation, and wandering are common behaviors associated with dementia and frequently observed among nursing home residents. Even with pharmacological treatment, behaviors often persist, hindering quality of life for elders, their family, and paid caregivers. This study examined the use of music therapy for treatment of these symptoms among 132 people with moderate to severe dementia in nursing homes. Participants were evaluated for depressive symptoms, agitation, and wandering to determine their predominate behavior. There were two assessments, two weeks apart, prior to intervention, followed by a two-week intervention, and two follow-up assessments, also two weeks apart. A repeated measures ANOVA determined that after two weeks of music therapy, symptoms of depression and agitation were significantly reduced; there was no change for wandering. Multivariate analyses confirmed a relationship between music therapy and change in neuropsychiatric symptoms associated with dementia. Results suggest widespread use of music therapy in long-term care settings may be effective in reducing symptoms of depression and agitation.
This study concerns moments of homecoming among people with advanced dementia disease living in a residential care facility. Our main finding from participant observations with nine residents was that the residents showed moments of homecoming, i.e. they alternated between verbal and/or nonverbal expressions of feeling at home and of not feeling at home. If care providers understand that they can help people with advanced dementia disease experience moments of homecoming, they can focus on aspects of care that can promote these experiences.
This study aimed to understand the preserved elements of self-identity in persons with moderate to severe dementia attributable to Alzheimer's disease. A semi-structured interview was developed to explore the narrative self among residents with dementia in a residential care facility, and residents without dementia in an independent living setting. The interviews were transcribed verbatim from audio recordings and analyzed for common themes, while being sensitive to possible differences between the groups. The participants with dementia showed evidence of self-reference even though losses in explicit memory were evident. The most noticeable difference between the two groups was time frame reference. Nonetheless, all participants showed understanding of their role in relationships and exhibited concrete preferences. Our findings suggest that memory loss and other cognitive deficits associated with moderate to severe dementia do not necessarily lead to a loss of "self."
Diagnosis disclosure in dementia is a complex area that results in positive and negative outcomes for both clinicians and patients. Eight clinicians and seven patients were interviewed about their recent experience of either giving or receiving a diagnosis of dementia. Interview transcripts were analysed using interpretative phenomenological analysis. The analysis revealed two higher order themes: Hiding from the Truth and The Social Environment: Help or Hindrance? Both clinicians and patients experience avoidance in relation to the diagnosis. The results support a psychosocial model of dementia and highlight the need for flexible follow up interventions that both recognise patients’ use of avoidance and denial as coping strategies and facilitate social support. The social environment can also assist and hamper clinicians’ efforts to help their patients. Future research is needed to elucidate optimal conditions for facilitating patients’ uptake of positive coping strategies.
Previous research has shown that people with dementia and caregivers derive wellbeing-related benefits from viewing art in a group, and that facilitated museum object handling is effective in increasing subjective wellbeing for people with a range of health conditions. The present study quantitatively compared the impact of two museum-based activities and a social activity on the subjective wellbeing of people with dementia and their caregivers.
A quasi-experimental crossover design was used. People with early to middle stage dementia and caregivers (N = 66) participated in museum object handling, a refreshment break, and art viewing in small groups. Visual analog scales were used to rate subjective wellbeing pre and post each activity.
Mixed-design analysis of variances indicated wellbeing significantly increased during the session, irrespective of the order in which the activities were presented. Wellbeing significantly increased from object handling and art viewing for those with dementia and caregivers across pooled orders, but did not in the social activity of a refreshment break. An end-of-intervention questionnaire indicated that experiences of the session were positive.
Results provide a rationale for considering museum activities as part of a broader psychosocial, relational approach to dementia care and support the use of easy to administer visual analog scales as a quantitative outcome measure. Further partnership working is also supported between museums and healthcare professionals in the development of nonclinical, community-based programs for this population.
Low-threshold support services are provided within the basket of services of German long-term care insurance as a part of respite care to support family carers and people with dementia. This study investigates various stakeholders’ (providers, coordinators, volunteers, family carers and people with dementia) perspectives on low-threshold support service regarding its organisation and conceptualisation as well as how stakeholders and users value low-threshold support service using a qualitative approach. Twelve guided interviews and group discussions were conducted with 31 participants. Organisation and conceptualisation are characterised by the lowness of the service thresholds, which is perceived to be quick and simple forms of support with no user requirements. Multiple barriers such as the challenging behaviour of people with dementia and their initial refusal as well as their holding low-threshold support service in low esteem can hinder the utilisation of these services. Low-threshold support service within the scope of the long-term care insurance law can be separated into two types: low-cost (non-professional) services and high-cost services with comprehensive training for ‘employed’ volunteers (professional). Both types are constantly developing within the landscape of the German long-term care system, and low-threshold support service appears to be adapted to diverse needs. Therefore, it is important to avoid replacing non-professional services with professional services.
Cognitive rehabilitation has been developed to improve quality of life, activities of daily living and mood for people with cognitive impairment, but the voice of people with cognitive impairment has been underrepresented. This study aimed to understand the experience of people living with cognitive impairment, as well as their caregivers who took part in a cognitive rehabilitation intervention programme. Twelve individuals with cognitive impairment and 15 caregivers participated in individual qualitative interviews. The interview data were analysed in three steps: 1) familiarisation of the transcripts; 2) identification of themes; 3) re-interpretation, refinement and integration of themes with methodological auditors. Both participants living with cognitive impairment and caregivers valued the comfortable environment with friendly, caring and supportive group leaders who taught practical tips and strategies. The participants living with cognitive impairment enjoyed socialising with like others. Caregivers benefited from learning about memory problems and sharing their challenges with other caregivers. The participants living with cognitive impairment emphasised the benefits of relational and practical aspects, whereas the caregivers valued the informational and emotional support. In conclusion, both participants living with cognitive impairment and caregivers found the cognitive rehabilitation group useful.
Mild cognitive impairment is a heterogeneous clinical state whereby assessed cognitive changes over time may progress to dementia, remain stable or revert to back to normal. This study aimed to identify, through discourse analysis, how people with a diagnosis of mild cognitive impairment used language in order to reveal the societal views and shared meanings of the diagnosis, and the positions taken by people. Seven people with mild cognitive impairment were interviewed, and three discourses emerged during analysis. One of the discourses revealed was ‘Not Knowing’ about mild cognitive impairment. Furthermore, in the absence of a coherent discourse related to mild cognitive impairment, participants went on to position themselves between two more familiar discourse; ‘Knowing’ about ageing and dying and ‘Not Wanting to Know’ about dementia. Clinicians must consider how information is presented to people about mild cognitive impairment, including where mild cognitive impairment is positioned in respect to normal ageing and dementia.
To investigate the relative effectiveness of different prompts for people with dementia during multistep tasks in the home, to inform prompting technology design.
Nine pairs of participants (one with dementia and a partner or relative) participated at home. The participants with mild to moderate dementia (5M/4F, aged 73–86 years) functioned at the Planned or Exploratory levels of the Pool Activity Level instrument. A touchscreen computer displayed different prompts during two set tasks: "card-and-envelope" and "CD player." The trials were scored to establish the relative effectiveness of the prompts. Individual tasks were also explored.
Text and audio prompts were each more effective than video or picture prompts for a card-and-envelope task, but this was not seen in a CD player task. The differences may be related to the type of actions within the tasks; the card-and-envelope actions were easier to convey verbally; the CD player actions lent themselves to visual prompts.
Designers of technology-based prompts for people with dementia should consider that the effectiveness of different prompts is likely to be task dependent. Familiar, unambiguous language can increase the success of tailored prompts. There are significant practical challenges associated with choosing and deconstructing everyday tasks at home.
Current research identifies advanced dementia to be the terminal phase of this progressive and incurable condition. However, there has been relatively little investigation into how family members of people with advanced dementia understand their relative’s condition. In this article, we report on semi-structured interviews with 10 family members of people with advanced dementia, in a residential aged care facility. Using a qualitative, descriptive design, we explored family members’ understandings of dementia, whether they were aware that it was a terminal condition, and the ways they developed their understandings. Findings revealed that the majority of family members could not recognize the terminal nature of dementia. Relying on predominantly lay understandings, they had little access to formal information and most failed to conceptualize a connection between dementia and death. Moreover, family members engaged in limited dialogue with aged care staff about such issues, despite their relatives being in an advanced stage of the disease. Findings from our study suggest that how family members understand their relative’s condition requires greater attention. The development of staff/family partnerships that promote shared communication about dementia and dying may enhance family members’ understandings of the dementia trajectory and the types of decisions they may be faced with during the more advanced stages of the disease.
This paper provides an overview of the evidence on the perspective of health care professionals (HCPs) in relation to advance care planning (ACP) for people with dementia, residing in long-term care settings. A narrative approach was adopted to provide a comprehensive synthesis of previously published literature in the area. A systematic literature search identified 14 papers for inclusion. Following review of the studies four themes were identified for discussion; Early integration and planning for palliative care in dementia; HCPs ethical and moral concerns regarding ACP; Communication challenges when interacting with the person with dementia and their families and HCPs need for education and training. Despite evidence, that HCPs recognise the potential benefits of ACP, they struggle with its implementation in this setting. Greater understanding of dementia and the concept of ACP is required to improve consistency in practice. Synthesising the existing evidence will allow for further understanding of the key issues, potentially resulting in improved implementation in practice.
Dementia is a progressive condition that impacts on individuals, families and care professionals. Maintaining quality of life through engagement with the person with dementia is an important part of their care. Dignity Therapy is an interactive, psychotherapeutic intervention that uses a trained dignity therapist to guide the person with dementia through an interview that then creates a written legacy called a generativity document. This can provide knowledge to inform care, as the condition progresses.
Generativity documents were analysed using framework analysis. Main themes from the analysis were origin of values, essence and affirmation of self, forgiveness and resolution and existentialism/meaning of life. These themes provide evidence of the type, scope and contribution that information generated from Dignity Therapy can make to the care and support of people with dementia. They provide information about the values, self-identity and the people and events that have been important to them and influenced their lives.
An increasing number of people with dementia are ageing at home in Sweden and in other countries. In order to meet the safety requirements, knowledge about how persons with dementia experience risks is required. The aim of the study was to explore and better understand how persons with dementia, living at home, experience risks in their daily life and how they handle these situations. Twelve persons with dementia were interviewed using open-ended questions, and the data were analyzed using a content analysis approach. Findings showed that participants experienced situations fraught with risks in their daily life as unfamiliar and confusing. Previously familiar places became unfamiliar to them, and details did not come together. They were uncertain about what actually had happened. How the participants handled these situations in order to reduce the risks are described.
This paper reports on the design of a program that aims to prototype teaching aged care facilities in Australia. Beginning in two Tasmanian residential aged care facilities, the intent of the program is to support large-scale inter-professional student clinical placements, positively influence students’ attitudes toward working in aged care and drive development of a high-performance culture capable of supporting evidence-based aged care practice. This is important in the context of aged care being perceived as an unattractive career choice for health professionals, reinforced by negative clinical placement experiences. The Teaching Aged Care Facilities Program features six stages configured around an action research/action learning method, with dementia being a key clinical focus.
With hip fracture and dementia increasing in incidence in the global ageing population, there is a need for the development of specific procedures targeting optimal treatment outcomes for these patients. This paper looks primarily at the factors that limit access to subacute rehabilitation services as a growing body of evidence suggests that access to timely inpatient rehabilitation increases functional outcomes for patients both with dementia and without. Information was gathered by searching electronic data bases (SCOPUS, Medline, CINAHL, Health Source Nursing/Academic Addition, Psychinfo and the Cochrane Library) for relevant articles using the search terms dementia OR Alzheimer* AND hip fracture AND subacute rehabilitation OR convalescence for the period 2005–2015. Abstracts were scanned to identify articles discussing eligibility and access. A total of nine papers were identified that directly addressed this topic. Other papers discussing success or failure of rehabilitation and improved models of care were also reviewed. Barriers to access discussed in the literature include information management, management of comorbidities, attitudes, resource availability, and the quality of evidence and education. By identifying these factors we can identify strategic points of intervention across the trajectory of prevention, treatment and rehabilitation that may improve outcomes for this growing group of vulnerable patients. Emerging best practice for these patients is also discussed.
This study aimed to determine whether the Markers of Assimilation of Problematic Experiences in Dementia scale (MAPED) can be used to identify whether the way in which participants talk about dementia changed during the group. All eight sessions of a LivDem group, which were attended by participants were recorded and transcribed. An initial analysis identified 160 extracts, which were then rated using the MAPED system. Inter-rater reliability was 61% and following a resolution meeting, 35 extracts were discarded, leaving 125 extracts with an agreed marker code. All of the participants were identified as producing a speech marker relating to dementia, and these varied between 0 (warding off) to 6 (problem solution). Examples of these markers are provided. The proportion of emergence markers (indicating the initial stages of assimilation) compared to later markers changed significantly between the first four sessions and the final sessions. This difference was still significant even when the markers produced by the most verbal participant, Graham, were excluded. The use of process measures within psychotherapy complements more conventional outcome measures and has both theoretical and clinical implications.
Neuroimaging forms an important part of dementia diagnosis. Provision of information on neuroimaging to people with dementia and their carers may aid understanding of the pathological, physiological and psychosocial changes of the disease, and increase understanding of symptoms. This qualitative study aimed to investigate participants’ knowledge of the dementia diagnosis pathway, their understanding of neuroimaging and its use in diagnosis, and to determine content requirements for a website providing neuroimaging information. Structured interviews and a focus group were conducted with carers and people with dementia. The findings demonstrate an unmet need for information on neuroimaging both before and after the examination. Carers were keen to know about neuroimaging at a practical and technical level to help avoid diagnosis denial. People with dementia requested greater information, but with a caveat to avoid overwhelming detail, and were less likely to favour an Internet resource.
The extent to which dementia affects a person’s testamentary capacity has been the subject of much litigation with some countries introducing legal tests to assess capacity. In light of substantial societal change in Albania in the last two decades and an epidemic of property litigation, Albanian legal practice is witnessing an increasing number of attempts to posthumously nullify wills. Plaintiffs are mainly relatives of the deceased testator who are unhappy with the quantity or quality of the property they have inherited. Based on plaintiffs’ claims, solicitors may request expert neuropsychiatric reviews postmortem, often basing their position on prescription drug use by the testator during his/her last years of life. The authors discuss ethical issues intrinsically related to the difficult role of a potential expert witness in these litigation cases.
Does current music therapy practice address the goals encapsulated in the UK Department of Health document, Living well with dementia: a national dementia strategy (the Dementia Strategy) published in 2009? A survey elicited the views of clients, family members, music therapists, care home staff and care home managers, about this question by focusing on the relationship between music therapy and the 17 objectives outlined in the Dementia Strategy. The results showed that the objectives that are related to direct activity of the music therapists (such as care and understanding of the condition) were seen as most fulfilled by music therapy, while those regarding practicalities (such as living within the community) were seen as least fulfilled. Although the responses from the four groups of participants were similar, differences for some questions suggest that people's direct experience of music therapy influences their views. This study suggests that many aspects of the Dementia Strategy are already seen as being achieved. The findings suggest that developments of both music therapy practices and government strategies on dementia care may benefit from being mutually informed.
The help of specialist clinicians is often sought to advise staff in residential and nursing care homes about how to work with people with dementia whose behaviour is challenging. The Newcastle Model (
The physical and mental health of older adults with dementia is affected by levels of social integration. The development of dementia special care units (D-SCU) arose, in part, to facilitate more meaningful social interactions among residents implying greater social integration of D-SCU residents as compared to residents in a traditional nursing home (TNH). But, it is unknown whether D-SCU residents are receiving equal or greater benefits from living on a segregated unit intended to enhance their social environment and integration through both design and staff involvement. The purpose of this study was to pilot test a comprehensive objective assessment to measure social integration among nursing home residents with dementia and to compare levels of integration of residents living on a D-SCU to those living in a TNH. A total of 29 residents participated (15 D-SCU and 14 TNH) and data were gathered from medical charts, visitor logs, and through direct observations. Over 1700 interactions were recorded during 143 h of observation. Specifically, the location, context, type, quantity, and quality of residents’ interactions were recorded. Overall, the majority of resident interactions were verbal and initiated by staff. Interactions were social in context, and occurred in public areas, such as the common room with a large screen TV. Average interactions lasted less than 1 min and did not change the resident’s affect. Residents spent between 10% and 17% of their time interacting with other people on average. D-SCU staff were significantly more likely to initiate interactions with residents than TNH staff. D-SCU residents also experienced more interactions in the afternoons and expressed more pleasure and anxiety than residents in the TNH. This study helps to lay the groundwork necessary to comprehensively and objectively measure social integration among people with dementia in order to evaluate care environments.
This paper presents the findings from a pilot project introducing Singing for the Brain into care centres with people with a learning disability and a form of dementia or memory problem. Through participant observations, patient and staff feedback, there was strong support for the use of Singing for the Brain with this client group, with participants reporting high levels of enjoyment and engagement in the sessions. The potential for these sessions to support communication, memory, social engagement and choice was reported by staff and participants. Whilst anecdotal reports also suggested the sessions had a positive impact on elevating mood over a sustained period of time. The pilot sessions are discussed in reference to the regular sessions run for people with dementia and comparisons drawn across the two approaches. Further evidence is required to understand the potential impact on participant’s well-being from attending these sessions.
This study investigated the effects of carer attributions on help-seeking behaviour for people with dementia using interviews with 84 carers recruited through general practice. Memory loss was the most commonly reported first symptom but psychological and behavioural symptoms were also common at onset. In over a third of individuals help-seeking was delayed for a mean of 25 months (range 6–69, SD 19.3). Help-seeking between those who attributed symptoms to dementia, or to unknown causes, and those who attributed symptoms to personality, ageing, life events or other illnesses was statistically significant (p < 0.001). No statistically significant associations between help-seeking and patient or carer characteristics were found. There is a need to raise public awareness about the range of symptoms suggestive of dementia. Assumptions that age and other conditions may be the likely cause of an individual’s cognitive decline needs to be challenged by practitioners. Attribution of symptoms to characteristics other than dementia delays help-seeking.
A quasi-experimental study using a pre–posttest design was conducted in four aged care facilities to assess the effects of a person-centred care (PCC) multisensory stimulation (MSS) and motor stimulation (MS) program, implemented by direct care workers, on the behaviors of residents with dementia. Data were collected at baseline and after the intervention through video recordings of morning care routines. Forty-five residents with moderate and severe dementia participated in the study. A total of 266 morning care routines were recorded. The frequency and duration of a list of behaviors were analyzed. The frequency of engagement in task decreased significantly (p = .002) however, its duration increased (p = .039). The duration of gaze directed at direct care workers improved significantly (p = .014) and the frequency of closed eyes decreased (p = .046). There was a significant decrease in the frequency of the expression of sadness. These results support the implementation of PCC–MSS and MS programs as they may stimulate residents’ behaviors.
The study objective was to understand providers’ perceptions regarding identifying and treating older adults with delirium, a common complication of acute illness in persons with dementia, in the pre-hospital and emergency department environments.
The authors conducted structured focus group interviews with separate groups of emergency medical services staff, emergency nurses, and emergency physicians. Recordings of each session were transcribed, coded, and analyzed for themes with representative supporting quotations identified.
Providers shared that the busy emergency department environment was the largest challenge to delirium recognition and treatment. When describing delirium, participants frequently detailed hyperactive features of delirium, rather than hypoactive features. Participants shared that they employed no clear diagnostic strategy for identifying the condition and that they used heterogeneous approaches to treat the condition. To improve care for older adults with delirium, emergency nurses identified the need for more training around the management of the condition. Emergency medical services providers identified the need for more support in managing agitated patients when in transport to the hospital and more guidance from emergency physicians on what information to collect from the patient’s home environment. Emergency physicians felt that delirium care would be improved if they could have baseline mental status data on their patients and if they had access to a simple, accurate diagnostic tool for the condition.
Emergency medical services providers, emergency nurses, and emergency physicians frequently encounter delirious patients, but do not employ clear diagnostic strategies for identifying the condition and have varying levels of comfort in managing the condition. Clear steps should be taken to improve delirium care in the emergency department including the development of mechanisms to communicate patients’ baseline mental status, the adoption of a systematized approach to recognizing delirium, and the institution of a standardized method to treat the condition when identified.
Alzheimer’s disease results in marked declines in navigation skills that are particularly pronounced in unfamiliar environments. However, many people with Alzheimer’s disease eventually face the challenge of having to learn their way around unfamiliar environments when moving into assisted living or care-homes. People with Alzheimer’s disease would have an easier transition moving to new residences if these larger, and often more institutional, environments were designed to compensate for decreasing orientation skills. However, few existing dementia friendly design guidelines specifically address orientation and wayfinding. Those that do are often based on custom, practice or intuition and not well integrated with psychological and neuroscientific knowledge or navigation research, therefore often remaining unspecific. This paper discusses current dementia friendly design guidelines, reports findings from psychological and neuropsychological experiments on navigation and evaluates their potential for informing design guidelines that decrease spatial disorientation for people with dementia.
Dementia Day programmes are considered important in supporting the well-being of both people living with dementia and their caregivers. There is, however, limited evidence on the effectiveness of these programmes. This article reports on a study undertaken in New Zealand on the effectiveness of community-based dementia day programmes. The small-scale pilot study was aimed at investigating the elements that make up an effective client-focused dementia day programme and the methods employed by organisations to measure the outcomes of these programmes. A mixed methods approach was employed with multiple stakeholders. The research revealed that effective day programmes comprised five core elements, and that surveys, reporting and auditing processes are routinely used to measure the quality of outcomes of day programmes. Although these findings are reflective of a specific context, it raises concerns about the nature and availability of evidence informing decisions regarding the design and implementation of day programmes internationally.
Dementia requires expert care and decision making, based on sound evidence. Reliable evidence is difficult for busy dementia care professionals to find quickly. This study developed an experimentally tested search filter as an innovative tool to retrieve literature on dementia. It has a known retrieval performance and can be provided as an open access web link directly to current literature. The Dementia Search Filter was developed using validated methodology. An Expert Advisory Group of dementia care practitioners and researchers ratified a representative set of relevant studies and undertook post hoc relevance assessment, to ensure the usefulness of the search filter. The Dementia Search Filter is published on two websites and combined with expert searches to link to evidence on dementia, at end of life in aged care settings and more generally. Evidence accessed by the Dementia Search Filter will help overcome barriers to finding current relevant research in the field, for practitioners, researchers and decision makers.
There is an increasing focus on providing effective psychosocial interventions to improve quality of life in dementia care. This study aims to explore the attitudes and perceptions of staff who participated regularly in Music Therapy (MT) and Dance Movement Therapy (DMT) groups for residents with dementia in a nursing home.
In-depth interviews were conducted with seven members of care home staff. Data were analysed using interpretative phenomenological analysis.
A representation modelling the impact of MT and DMT in a nursing care home. Three main themes were identified. 1) Discovering residents' skills and feelings; 2) Learning from the therapists to change approaches to care practice with subthemes: time, space and pace, choice, following the residents' lead; 3) Connection between staff and residents.
The model indicated that both interventions performed in parallel helped staff to discover residents' skills and feelings. Although it is a small sample size, this study strongly suggests that MT and DMT can have a positive influence in helping care staff to provide a meaningful care environment.
Catch a Glimpse of Me is an ongoing project that uses video to help staff deliver more person-centered care for people with dementia living in long-term care. Focus groups consisting of residents, family and staff members were conducted to develop a template for the development of the videos. The five themes they identified as being important to include are: family; interests and hobbies; memories and moments; life space and getting personal. The article describes the process of developing the videos and discusses the ongoing potential of the Catch a Glimpse of Me project.
Caregivers of persons living with dementia (PWD) taking cholinesterase inhibitors, who care 3 + h over three days/week, were interviewed. This study uses thematic content analysis to compare responses to the open-ended question "What do you believe getting involved in activities outside the home means for someone with dementia?" in spouse (n = 613) and adult–children (n = 260) caregivers, and across mild (n = 314) and moderate–severe stages (n = 280). For adult–children caregivers, activity participation promotes independence in their parents. Spouses describe activity in the context of their relationship with the PWD, and the experience is framed around their continued social roles as a couple. Mild-stage caregivers report the difficulty and negative outcomes (e.g. frustration, stigma) of engaging in activity, while moderate–severe caregivers discuss activity as preserving abilities in PWD and providing connection to cohort. This may indicate areas for improved activity provision and support for spouse (i.e. emotional) and adult–children (i.e. resources) caregivers across dementia stages.
This pilot study aimed to assess the feasibility and acceptability of a behavioral activities intervention (BE-ACTIV) in Australian nursing homes. BE-ACTIV was developed by researchers at the University of Louisville, USA, to improve mood and quality of life (QOL) in nursing home residents with mild to moderate dementia. An eight-week trial was conducted and 10 residents with mild to moderate dementia received the BE-ACTIV intervention while eight residents received a Walking and Talking intervention. Measures of depression (GDS-12R) and QOL (QOL-AD-NH) were administered prior to and following the interventions. Qualitative feedback indicated residents benefited from BE-ACTIV, evident by improved mood, although no statistically significant treatment effect was found. Moreover, the intervention was found to be feasible and acceptable to Australian nursing home staff and our findings highlight the importance of individualizing activities for people with dementia, of which 1:1 staff attention was a key component.
This study assessed the effects of a psycho-educational intervention on direct care workers' person-centredness during morning care to residents with dementia. A controlled pretest–posttest study was conducted in four aged-care facilities with 56 direct care workers (female, mean age 44.72 ± 9.02). Two experimental facilities received a psycho-educational intervention comprising person-centred care competences and stress management skills; control facilities received an education-only intervention, without stress support. In total, 112 video-recorded morning care sessions were coded using the Global Behaviour Scale. Both groups reported significantly higher scores on eight of 11 items of the Global Behaviour Scale and on the Global Behaviour Scale total score at posttest (F=10.59; p=0.02). Global Behaviour Scale total score improvements were higher for the experimental group, with values close to significance (F=3.90; p=0.054). The findings suggest that a psycho-educational intervention may increase care workers' person-centredness. Further research is needed to explore the long-term sustainability and extent of its benefits on workers and residents.
Older people fear Alzheimer’s disease. Central to the fear of the disease is the dread of the loss of identity or self. The aim of this study is to investigate the thoughts people in an early stage of Alzheimer’s disease have about their future selves, and the consequences these thoughts have for their temporary lives. The concepts of future and self are understood in terms of the concepts ‘possible selves’ and ‘selfhood’. The participants in the study are two men in their early 60 s. The data consist of four individual interviews and 11 facilitated family conversations including two of their next of kin. The data were collected over a two-year period. The data were interpreted using a hermeneutic analysis inspired by Gadamer. The main findings were the efforts made by the participants to live in the present and their worries about a future as ‘living dead’.
Elder-clowns are a recent innovation in arts-based approaches to person-centred dementia care. They use improvisation, humour, and empathy, as well as song, dance, and music. We examined elder-clown practice and techniques through a 12-week programme with 23 long-term care residents with moderate to severe dementia in Ontario, Canada. Analysis was based on qualitative interviews and ethnographic observations of video-recorded clown-resident interactions and practice reflections. Findings highlight the reciprocal nature of clown-resident engagement and the capacity of residents to initiate as well as respond to verbal and embodied engagement. Termed relational presence, this was achieved and experienced through affective relationality, reciprocal playfulness, and coconstructed imagination. These results highlight the often overlooked capacity of individuals living with dementia to be deliberately funny, playful, and imaginative. Relational presence offers an important perspective with which to rethink care relationships between individuals living with dementia and long-term care staff.
As dementia progresses, caregivers increasingly have to manage the decline of food-related abilities with little outside information or input from support services The provision of food coping skills and knowledge can lessen the burden on caregivers. However, there is little research on caregivers’ perspectives on food-related services. This paper reports on a qualitative study to investigate informal caregivers’ experiences of, and views on, food-related information and support services in dementia. Twenty informal caregivers were interviewed and the transcripts from these interviews were analysed using both deductive and inductive thematic analysis. Four categories emerged. ‘Direct food-related Information’, covers written material, training, ‘Direct food-related informal support’: lunch clubs, ‘Indirect non-food related formal support services’ covers respite services and domestic help at home. Finally ‘no services required’ covers those who did not feel they needed any form of intervention due to confidence in managing food-related processes or having no change in dementia progression and food responsibility. Most caregivers will need different levels of information and support at different stages of dementia. It is necessary therefore to undertake ongoing individual assessment of food information and support needs.
The general practitioner (GP) is in a pivotal position to initiate and adapt care for their patients living with dementia. This study aimed to elicit GPs’ perceptions of the potential barriers and solutions to the provision of good-quality palliative care in dementia in their practices. A postal survey of GPs across Northern Ireland was conducted with open-ended items soliciting for barriers in their practices and possible solutions; 40.6% (138/340) were returned completed. Barriers to palliative care in dementia were perceived to be a dementia knowledge deficit for healthcare staff and the public, a resource shortfall within the GP practice and community, poor team coordination alongside inappropriate dementia care provision, and disagreements from and within families. These findings have significant implications for educators and clinicians as enhanced dementia education and training were highlighted as a strong agenda for GPs with the suggestions of dementia awareness programmes for the public.
Previous literature reveals a high prevalence of grief in dementia caregivers before physical death of the person with dementia that is associated with stress, burden, and depression. To date, theoretical models and therapeutic interventions with grief in caregivers have not adequately considered the grief process, but instead have focused on grief as a symptom that manifests within the process of caregiving. The Dementia Grief Model explicates the unique process of pre-death grief in dementia caregivers. In this paper we introduce the Dementia Grief Model, describe the unique characteristics of dementia grief, and present the psychological states associated with the process of dementia grief. The model explicates an iterative grief process involving three states—separation, liminality, and re-emergence—each with a dynamic mechanism that facilitates or hinders movement through the dementia grief process. Finally, we offer potential applied research questions informed by the model.
Investment in improving community-based dementia care is underway in the United Kingdom, but we do not know how well it meets the needs of people with dementia and those who care for them. The aim of this study was to explore the service use and reported unmet needs of people with dementia in two samples recruited a decade apart. We interviewed 122 carers from Central Scotland and London in 2000–2001 and 84 carers from South-East England in 2010–2011 using the same interview schedule. The two samples of carers had similar demographics. The later groups were more likely to be spouses, slightly older, not working, ethnically diverse, have better perceived health and better access to a car. The people with dementia in each sample had similar characteristics and levels of disability. Carers in the later sample reported more met need for activities of daily living, although up to a third were still not getting sufficient help with some activities. Nearly half of both samples reported verbal aggression and nearly a fifth physical aggression, yet most have not received advice on how to manage this. There is a more evident role of the practice nurse (p = 0.01) and less evident use of community nurses (p = 0.0005), psychiatric nurses (p = 0.006) and health visitors (p = 0.0003) in the more recent sample.
To describe how people experiencing dementia define quality of life and how this may be supported.
Qualitative descriptive component of mixed methods cross-sectional study.
Western Canadian community (4-h weekly care minimum), supportive housing (24-h support/supervision), personal care homes (24-h nursing).
One hundred and thirty-six persons aged 65+ experiencing dementia.
Semi-structured interview questions. Rating of meeting life’s goals.
Participants characterised quality of life as: freedom, independence, having basic needs met, physical health, engagement in meaningful activities and tranquility. A need for self-determination/choice was evidenced across all domains. Increased access to skilled nursing care, support for meaningful engagement with family and meeting life’s goals were endorsed as adding most to quality of life; 43% reported meeting all life’s major goals.
People experiencing dementia may have better quality of life when choice/self-determination is supported. Enhancements in care environment, independence, engagement and meeting of life’s goals merit urgent attention.
Minimal research explores the impact of a career in dementia care on senior health professionals. This study sought positive and negative subjective interpretations from seven senior health professionals regarding their experiences in dementia care. Data from semi-structured interviews were analysed using interpretative phenomenological analysis (IPA). One superordinate theme, Honouring stigmatised self, overarched four sub-themes: Systemic stigma, Invalidated, Self-respect and Moral integrity and Growth. Stigma was interpreted as systemically entrenched minimisation of aged care and the aged-care workforce, including poor remuneration and training. Participants experienced peer invalidation particularly when attempting to resolve complex professional and moral challenges in dementia care. These often occurred in the context of efforts to individualise care, constrained within a medical model. Paradoxically, external invalidation motivated a search for redefining ‘self’ and moral integrity. By wisely acknowledging career experience, growthful domains of self-respect, optimism, humility and innovation defined professional practice and personal choices. Implications are discussed.
Simulated presence therapy is a technique which utilises a familiar recorded voice to calm and reassure people with dementia who are agitated or anxious. Although simulated presence therapy has shown potential benefits in small-scale studies, practical limitations in making and playing the recordings have restricted its use. An alternative method of delivering a message from an attachment figure is through a personal message card. This was one of seven products used within the Bath Memory Technology Library which was made available free of charge to people affected by dementia and their carers. This paper provides an evaluation of the personal message cards. Although feedback was received on only 10 of the 24 cards that were distributed, for nine people there was evidence that the cards met the goals that had been set either fully or in part, and that people affected by even quite severe levels of dementia could benefit from them.
Minimal research explores the impact of dementia and a dementia diagnosis on families from the unique vantage of senior health professionals. The participants of this study, eight senior aged care professionals, provided unique interpretative insights into family dynamics and sense-making on the journey with dementia, and their own role in that journey. Both positive and negative perspectives were sought. Data from semi-structured interviews were analysed using Interpretative Phenomenological Analysis (IPA). One superordinate theme, Dementia naiveté; redefined intimacy, overarched Embarrassed shame; Maintaining hope; Redefining a model of intimacy; and Redefined relational intimacy and growth. Within these themes, the participants shed light on hurtful embarrassment and shame experienced by families associated with the diagnostic label given to a loved one. This label was perceived to either trigger separation, hurt and immobility through ignorance, or precipitate a frenzy of naive yet hopeful energy for seeking that elusive cure. The participants saw their role as one of enacting a new way of connecting what was with what could be. Thus, they modelled advocacy, integral care and relational intimacy. Validation came in witnessing a redefining of intimacy in many families who were able to embrace that holistic and empathic approach to the shifting presentation of dementia. Psychological well-being was observed to occur when families embraced growthful domains, e.g. acceptance, hope, relational closeness and altruistic concern for other families. Implications for future care models are discussed.
Spousal caregivers of persons with dementia often have difficulty engaging persons with dementia in leisure activities. This qualitative descriptive study identifies how caregivers perceive their spouses’ participation in leisure activities since dementia onset and the professional guidance caregivers require to increase persons with dementia participation in shared leisure activities. Nine spousal caregivers from a hospital-based caregiver intervention attended one of three focus groups. Using symbolic interactionism and selective optimization with compensation theory as guiding frameworks, thematic content analysis was performed. Three major themes were identified: Recognizing and acknowledging changes, Making sense of changes and conflicts, and Embracing changes and forging ahead. Findings can be used by healthcare providers to better understand caregivers’ needs for engaging persons with dementia in shared leisure activities, and inform development of feedback protocols to enhance caregiver interventions.
This qualitative study aimed to see whether the Markers of Assimilation of Problematic Experiences in Dementia (MAPED) scale could be applied to couples. It aimed to explore the interactions between couples and how this affected the levels of assimilation. Semi-structured interviews were conducted with four heterosexual couples. The results suggested that MAPED can be usefully applied to couples. It highlighted the oscillating process which couples undergo as they process a dementia diagnosis. This supports the notion that making sense of a dementia diagnosis is not static, but a fluctuating and ever changing process. The strategies couples employed either facilitated or prevented the expression and integration of the Problematic Voice. The study highlights the importance of supporting couples together during a dementia diagnosis.
Leisure has emerged as a prominent research theme within the growing body of knowledge on dementia, with a focus on physical activity. Yet participation in any form of leisure presupposes an ability to freely choose to partake in activities and to negotiate one’s way around key barriers. In the case of dementia, the ability to undertake leisure activities is subject to a greater range of barriers, structured in a hierarchical manner that contributes to social exclusion if not addressed. This study based on focus groups with people with dementia and their family members conducted in Dorset, UK illustrates a range of barriers to leisure participation. How to create or maintain leisure opportunities for those living with dementia where households affected by dementia do not adopt avoidance behaviour, compounding a sense of isolation and exclusion is a challenge. Leisure can be an important strategy framed as a form of resistance to the social disabilities experienced by those living with dementia and it is potentially isolating impact.
Research investigating behavioural-variant frontotemporal dementia has concentrated on identifying and quantifying people’s difficulties; yet few studies have considered how people with behavioural-variant frontotemporal dementia make sense of their difficulties. Five participants were interviewed and interpretive phenomenological analysis used to analyse the data. Two superordinate themes emerged: ‘Bewilderment’ and ‘Relationships with others’. ‘Bewilderment’ reflected the feelings of the participants from the start of their dementia, and was divided into two main themes (1) ‘Awareness of change: What’s the problem? and (2) Threats to self: This is not me. The superordinate theme, ‘Relationships with others’, reflected difficulties with social relationships and comprised two main themes (1) ‘Family and friends: Things haven’t changed... but do I say anything wrong?’ and (2) Coping with threats to self: Blame others or just avoid them. The themes were discussed in relation to literature evaluating the difficulties associated with behavioural-variant frontotemporal dementia together with implications for clinical practice.
Primary care-led dementia services are an increasingly common form of service delivery; however, little is known about how these services are understood by their main stakeholders: the patients, family members and health care professionals. A primary care-led dementia service was piloted in the South Gloucestershire area during 2012, in which general practitioners (GPs) led the process of assessment and establishing a diagnosis. Of the 26 surgeries in the area, 11 initially agreed to participate in the pilot, with 12 more joining the project by the end of December 2012.
The aim of this study was to provide a qualitative analysis of the experiences of health care professionals, patients and their families, of the new process of assessment, diagnosis and treatment of dementia within a primary care service.
Four patients, three care-givers and eight health care professionals were interviewed by peer researchers – all of whom were current care-givers. Interviews were transcribed and analysed using thematic analysis following Braun and Clarke’s model. Data were also gathered about the number of referrals and what happened to these referrals.
Themes gathered into four main areas: ‘the journey’, ‘what next?’, ‘the benefits and limits of primary care’ and ‘are GPs getting it right’?
The analysis provided a perspective on the experiences of patients, family members and health care professionals involved in the relocation of part of the memory service, from secondary care (memory clinics) to primary care, being piloted in South Gloucestershire. This identified both practical issues to be improved upon as well as possible barriers.
In this paper, we present new insight into the ways in which carers of people with dementia make decisions in the context of seemingly declining autonomy and freedom associated with the condition. Our focus is on the ways in which carers reflect on decisions made in different temporal contexts (day-to-day, medium- and long term). Drawing on data and analysis from in-depth interviews with male informal carers of women with mild to moderate dementia living in the northwest of England, we outline how the decision-making process is dependent on the temporality of the decisions. Arguably unsurprisingly, we found that short-term or ‘day-to-day’ decisions were made with input from those cared for, while longer term decisions were deferred until a point when necessity meant carers had to make decisions themselves. However, and importantly, carers were aware of the implications of how they were making decision, including the potential impact in terms of partial withdrawal, or even full denial, of autonomy of those they care for. Consequently, we argue that carers adopt a form of practised autonomy to negotiate the complexity of everyday decision making while managing longer term uncertainty and anxiety.
The way in which persons with dementia and their spouses regard the future could influence how they experience the disease itself. This study aims to explore how the future is understood by couples living with dementia. The analysis reveals different ways in which couples understand the future. The findings show that persons with dementia describe the here and now in ways that take the gloomy future they dread as a point of reference, and as a result of this, they operate in what we term "the not yet horizon". But while they take for granted that there is a horizon that they have not yet reached, their spouses always seem to focus on the horizons that they have already crossed. The article discusses the findings in relation to ideas such as critical periods, existential coordinates and possible selves, and problematizes the implicit assumptions about the future that dementia researchers tend to operate from.
Positive aspects of caregiving in dementia have been identified as important in understanding the experiences of carers, yet the research base lacks clear definitions of key concepts. Qualitative research explores carers’ experiences of positive aspects of caregiving in rich detail which lends itself to supporting theory development. The aim of the present review was to critically evaluate the empirical findings of qualitative studies that have explored positive aspects of caregiving in dementia. A systematic search of the literature revealed 14 studies that met this aim. Carers described multiple positive dimensions of caregiving and identified several factors that were important in supporting their positive caregiving experience. The present review evidences a solid base of understanding of the positive aspects of caregiving in dementia from which concepts and theories can be further developed. Clinical and research implications are discussed.
The ‘Pathways to Diagnosis’ study captured the experience of the prediagnosis period of Alzheimer’s disease and related dementias through indepth interviews with 29 persons with dementia and 34 of their family caregivers across four sites: anglophones in Calgary, francophones in Ottawa, Chinese-Canadians in Greater Vancouver and Indo-Canadians in Toronto. In this cross-site analysis, we use the ‘Candidacy’ framework to comprehensively explore the challenges to securing a diagnosis of dementia in Canada and to develop relevant health and social policy. Candidacy views eligibility for appropriate medical care as a process of joint negotiation between individuals and health services, which can be understood relative to seven dimensions: identification of need, navigation, appearances at services, adjudication by providers, acceptance of/resistance to offers, permeability of services and local conditions. Interviewees experienced challenges relative to each of the seven dimensions and these varied in form and emphasis across the four ethno-linguistic groups.
There is a growing appreciation of the significance of socio-cultural context for the experiences of an individual living with dementia. There is, too, an emergent awareness that dementia is a gendered issue, disproportionately affecting women compared with men. However, little attention has been given as yet to the experiences of lesbian and bisexual women living with dementia. This article addresses this gap in knowledge, exploring the significance of the intersection of ageing, gender and sexuality for lesbian and bisexual women with dementia. It suggests that stigma and social marginalisation associated with dementia and with ageing, gender and sexuality intersect to compound the social exclusion of lesbians and bisexual women. This has implications for early diagnosis and treatment. Moreover, community care policy, which is predicated on heterosexist norms fails to take into account older lesbians and bisexual women’s support networks and so is less likely to be attuned to their needs. Residential care provision is perceived by older lesbians and bisexual women as being heteronormative at best and homophobic at worst. Services which do not recognise, validate and support their identities will compound their anxiety, confusion and distress. This may be contrary to Equality and Human Rights legislation and UK social policies. This paper draws upon, and analyses, extracts from a range of authorship, synthesising the material to present novel insights into the significance of gender and sexuality for the experience of dementia and dementia care.
The overall aim of the study was to investigate if and how persons with dementia were able to take part in negotiations for formal support, as cases of citizenship as practice. The transcripts used for analysis were from 11 assessment meetings conducted in Sweden, in which the formal applicant was a person with dementia. The findings suggest that the actual participation of persons with dementia in assessment meetings varies. Communication problems were found in the meetings to different degrees and were dealt with differently and with various consequences. For those persons with dementia contributing at the same levels as the other participants, there was an attempt at mutual understanding. For those making fewer contributions, the other interlocutors took over the initiative and thus affected the practice of citizenship by persons with dementia in a negative way. The practice of citizenship is situation based and varies depending on all participants. When the person with dementia is able to participate in the conversation, social workers can facilitate for them to overcome communication problems by giving them more time and signaling acceptance. If the person with dementia has great problems in participating, the other participants can find different strategies to at least involve her or him in the conversation.
Family members are often the care providers of individuals with dementia, and it is assumed that the need for this will increase. There has been little research into the association between the burden of care and the caregiver’s sense of coherence or receipt of social support. This study examined the relationship between the social support subdimensions and sense of coherence and the burden of care among older people giving care to a partner with dementia. The study was a cross-sectional observation study of 97 individuals, ≥65 years old and living with a partner who had symptoms of dementia. We used the Informant Questionnaire on Cognitive Decline in the Elderly, the Relative Stress Scale, the Social Provisions Scale, the Sense of Coherence Scale, and a questionnaire on sociodemographic variables. We used multiple regression analysis in a general linear model procedure. We defined statistical significance as p < 0.05. With adjustments for sociodemographic variables, the association with burden of care was statistically significant for the subdimension attachment (p < 0.01) and for sense of coherence (p < 0.001). The burden of care was associated with attachment and with sense of coherence. Community nurses and other health professionals should take necessary action to strengthen attachment and sense of coherence among the caregivers of people with dementia. Qualitative studies could provide deeper understanding of the variation informal caregivers experience when living together with their partner with dementia.
This case study explores the meaning one woman with Alzheimer’s disease (AD) gives to receiving assistance with instrumental activities of daily living (IADLs) from her spouse. Improving the care of people living with AD is widely accepted as an important outcome in dementia services. Understanding how it feels for the person with AD to receive that care is essential to enhance their quality of life. Experiences identified using interpretative phenomenological analysis focus on a connection to past self and maintaining identity whilst also accepting change. The experience of ‘Sameness and Change’ identifies her feelings of discontinuity whilst ‘Goodness’ depicts her continued emotional expression of care presented in an attempt to remain someone of value within her family. These findings offer new insight and understanding to assist a woman’s transition from carer to becoming cared for.
The personhood movement in dementia research has established the theoretical foundation for implementing cultural arts interventions in care practices. The underlying assumption is that professionals from the visual and the performance arts are well equipped to see the person behind the condition and to focus on possibilities for meaningful relationships in the here and now. This article focuses on poetry interventions as one example of cultural arts interventions. The use of poetry might seem counterintuitive, given that people with dementia lose their language abilities and that poetry is regarded to be the most complex literary form. I will argue that expanding on existing research on poetry interventions from a health and science perspective with a humanities approach will help illuminate how poetry works to enhance the exchange with people with dementia. Drawing on participant observations of poetry interventions by Gary Glazner (Alzheimer’s Poetry Project, USA) at the New York Memory Center, I will frame poetry interventions as a specific form of oral poetry in which people with dementia are positioned as cocreators of embodied texts and directly benefit from the power of the spoken word.
This study investigates the impact of a weekly group providing sport and physical activities for men with early onset dementia established by Notts County Football in the Community (NCFC). There were three aims: to investigate the effect of early onset dementia on individuals with the condition and their carers; to examine the perceptions of current levels of service provision for people with early onset dementia; and to analyse the impact of the group. Men with dementia (n = 5) attending the sessions, their carers (n = 5), NCFC coaching staff (n = 5) and people organizing/facilitating the sessions (n = 5) were interviewed. Semi-structured interviews explored the participants’ experiences of dementia, their opinions on current service provisions and on the sessions. Data were analysed using thematic analysis. Four main themes were found: loss related to the condition of dementia and its impact on relationships (‘Loss’); lack of age-appropriate services for people with early onset dementia (‘Lack of Resources’); enjoyment and positive anticipation related to the group for all involved (‘Enjoyment and Anticipation’); and ‘the Notts County Effect’ which attributed the success of the sessions to the strong brand of the football club, and to personalized service in a "dementia-free" environment. The NCFC sessions provided a safe low-cost intervention with positive effects upon quality of life for both people with early onset dementia, their carers and the staff involved. This suggests that the service may be valuable to a wider range of people living in different areas.
A common method of managing challenging behaviour associated with dementia is long-stay special care units, though models are very diverse. In New South Wales, Australia, the five remaining state-run long-stay special care units for this population were funded to adopt a shorter-term model which had been trialled by one of the units. Transitional Behavioural Assessment and Intervention Service Units, incorporating an integrated outreach team, were to provide multi-disciplinary assessments, develop individualised bio-psychosocial management plans for, and appropriately discharge people with significant levels of Behavioural and Psychological Symptoms in Dementia. The current study assessed both the effects of the change and the clinical effectiveness of the model.
A repeated measures design, supplemented by multiple one-time measures. A range of standard instruments were administered, patient data from other types of inpatient units were obtained, interviews conducted, and medical records examined.
Transitional Behaviour Assessment and Intervention Service units were admitting patients with dementia and a variety of significant challenging behaviours. Length of stay was shortened in all units, patients turnover greatly increased, and there was a low re-admission rate. The model was substantially cheaper than psychiatric care in two units where it was fully implemented; one unit cost the same as psychiatric care, and two units were not cost-effective because of low occupancy – related to not fully implementing the model. Referring facilities reported that in the absence of the units, their main strategy would have been to increase sedation. In the Transitional Behavioural Assessment and Intervention Service units, behavioural incidents were primarily managed through psychosocial means. It is not known whether behaviour is reduced over time, staff become better at managing the behaviour when it occurs, or both.
The evaluation showed that the model can be transferred to other units and is a cost-effective way of assessing, managing, and successfully discharging people with complex challenging behaviours, though only when fully implemented.
Dementia has detrimental effects on cognitive, psychological and behavioural functioning, as well as significant impact on those who provide care. There is a need to find suitable psychosocial interventions to help manage the condition, enhance well-being, and to provide support for caregivers. This study explored the impact of Singing for the Brain™, an intervention based on group singing activities developed by The Alzheimer’s Society for people with dementia and their carers. This qualitative study used semi-structured interviews with people with dementia and their carers. Ten interviews involving 20 participants were analysed thematically. Social inclusiveness and improvements in relationships, memory and mood were found to be especially important to participants. As well as enjoying the sessions, participants found that attending Singing for the Brain™ helped in accepting and coping with dementia.
There are currently no internationally recognised and approved processes relating to the care of older persons with dementia in prison. This research aimed to develop tools and procedures related to managing the care of, including the identification and assessment of, older persons with dementia who are imprisoned in New South Wales, Australia. A modified approach to the Policy Delphi method, using both surveys and facilitated discussion groups, enabled experts to come together to discuss improving the quality of care provision for older persons with dementia in prison and achieve research aims.
Hospital admission of a person with dementia can have a significant impact on the family carer, who temporarily relinquishes caring to health professionals. A descriptive qualitative design using in-depth interviews with a conversational approach was used to elicit data. Adjusting to the change in the carer’s role can be challenging and result in feelings of helplessness, loneliness, loss of control and being undervalued. Family support can assist with the transition but family conflict increases anxiety. Good communication between clinicians and the carer is vital. The carer should be included in decision-making as the ‘expert' in the care of the person with dementia. This article discusses findings of a larger study specifically related to the emotional support required for the carers of people with dementia, who are admitted to hospital. The carer and the patient must be considered as a dyad in relation to discharge planning.
In this study, the practical application of Integrative Validation Therapy (IVA) in a nursing home for people with dementia was investigated and evaluated from the perspectives of professionals and relatives by using Fourth Generation Evaluation. IVA, a complex intervention frequently applied in Germany’s long-term care settings, is a modification of Feil’s Validation Therapy and contains a specific attitude and several components of action. The findings demonstrate that professionals as well as relatives of nursing home residents gave the intervention a positive rating. From the perspective of the participating professionals, the application of IVA results in less agitated residents which also has an influence on the consumption of benzodiazepine and neuroleptics. The authors conclude that IVA is a beneficial nursing intervention helping to facilitate the illness-related transition process of people with dementia. IVA is able to support them to cope with emotional distress during transition (e.g. irritability, anxiety, depression, changes in self-esteem). Another conclusion is that IVA supports person-centred care because, with IVA, professionals react to typical needs people with dementia have: comfort, inclusion, attachment and identity (
Learning about changes in communication of Deaf with dementia (DWD) is important in order to improve services and support DWD and their families. We explored family members’ views on the changes in communication DWD have and the ways communication was adapted due to progression of dementia.
A qualitative content analysis of thematic interviews that were conducted with eight close family members of DWD.
With decreasing vocabulary and increasing sign-finding difficulties, conversations became poorer, and DWD tended to diverge from the topic. Nonverbal communication became more important as the verbal communication abilities of DWD deteriorated, and the adult children took a more active role by taking initiative and guiding conversations.
DWD seem to go through similar changes in communication as hearing people with dementia. Adult children of DWD need to get used to interpreting and assisting their parent’s communication through different phases of dementia.
The introduction of a person-centred care (PCC) approach to dementia care has been a major paradigmatic shift in the care provision in residential settings for older adults in Ireland. However, policy implementation in nursing homes relies very much on the preparedness of nursing staff. This study explored this through semi-structured interviews with care assistants in two nursing homes which professed to support the PCC philosophy. We addressed their knowledge and perspectives of person-centred dementia care and views on various factors affecting its delivery. Findings showed considerable disparity between policy and practice, in particular because care assistants lacked clarity on what PCC is and reported that they were not educated in it. Notwithstanding this, carers’ perspectives on ‘good care’ for people with dementia included elements of PCC which suggested its ‘implicit’ use in practice. Besides the necessity of more (and more explicit) training on PCC, the findings also suggest concerns around communication between staff and management and the need for improvement of staffing resources and available time in residential settings in order to make the delivery of person-centred dementia care a reality.
Audiences must be critical of film representations of the aged woman living with Alzheimer’s disease and of dangerous reinscriptions of stereotypical equations about ageing as deterioration. This paper analyses the representation and decline of the aged woman through the different voices of Iris Murdoch in Richard Eyre’s film Iris (2001). Key vocal scenes are considered: On-screen encounters between young and aged Iris, vocal representations of dementia symptoms and silencing Iris as her disease progresses. Further, Iris’ recurrent unaccompanied song, "The Lark in the Clear Air," compels audiences to "see" Iris with their ears more than with their eyes, exemplifying the representational power of sound in film. This paper is an appeal for increased debate about sonic representations of aged women, ageing and Alzheimer’s disease and dementia in film. The significance of audiences’ critical awareness and understanding about the social implications of these representations is discussed.
This paper reviews empirical findings concerning the decision-making process of persons with dementia and their family carers, with a particular focus on the extent and determinants of involvement of persons with dementia in the decision-making process. To be included in this review, studies needed to be published in peer-reviewed journals between 1999 and 2014, report empirical data from participants with dementia and/or their family carers, and pertain to the involvement of persons with dementia and their family carers in decisions about everyday care, medical care and treatment, or long-term care. A total of 36 studies were included. Results indicated that not all persons with dementia are excluded from participating in the decision-making process, but there is a broad spectrum of what constitutes shared decision-making in dementia. Studies concerning the determinants of shared decision-making mostly focused on non-modifiable factors. Future research is needed to better promote shared decision-making among persons with dementia and their family carers.
The aim of the study was to identify problematic situations in using zebra crossings. They were identified from photo documentations comprising film sequences and the perspectives of people with dementia. The aim was also to identify how they would understand, interpret and act in these problematic situations based on their previous experiences and linked to the film sequences.
A qualitative grounded theory approach was used. Film sequences from five zebra crossings were analysed. The same film sequences were used as triggers in two focus group interviews with persons with dementia. Individual interviews with three informants were also performed.
The core category, the hazard of meeting unfolding problematic traffic situations when only one layer at a time can be kept in focus, showed how a problematic situation as a whole consisted of different layers of problematic situations. The first category, adding layers of problematic traffic situations to each other, was characterized by the informants’ creation of a problematic situation as a whole. The different layers were described in the subcategories of layout of streets and zebra crossings, weather conditions, vehicles and crowding of pedestrians. The second category, actions used to meet different layers of problematic traffic situations, was characterized by avoiding problematic situations, using traffic lights as reminders and security precautions, following the flow at the zebra crossing and being cautious pedestrians.
In conclusion, as community-dwelling people with dementia commonly are pedestrians, it is important that health care professionals and caregivers take their experiences and management of problematic traffic situations into account when providing support.
While social work practice with people with dementia and their families has a long but largely hidden history, it is an emerging area of specialism. The increased incidence, prevalence and recognition of dementia suggest that this area of practice will expand and so learning from previous practice may offer helpful insights. This paper describes and reflects upon social work practice with ‘dements’ in the 1950s in England. It draws on a reading of a small book written by a psychiatric social worker, Miss M (Muriel) H Bree, outlining her role in providing after-care to patients with neuro-syphilis who had been discharged from hospital to live with their families between 1942 and 1952 through her consideration of 275 case records and seven illustrative case studies. As a historical document, Bree’s account presents a rich description of the patients and their social circumstances in post-war Britain; an account of practice from a hospital based setting that reached into the community, and of the engagement of a social worker with her clients and their family members. Threads and continuities with contemporary social work practice with people with dementia are explored; particularly work with family carers, younger people with dementia, and the value placed upon continuity of care.
The growing interest in early-onset dementia has attracted attention to the situation and experiences of the caregiver, most often the spouse. Several qualitative studies on caregiving spouses have underlined the importance of the feeling of loss, the change of role reported by the caregiving spouses, and the strategies used to protect the person with dementia, all of which raise the question of the relational dynamics at play in these dyads. The present study on 16 couples examines the experiences of each partner, as well as the kinds of interactions taking place within the dyad and how they have evolved since the disease began.
An interpretative phenomenological analysis was conducted on dyadic semi-structured interviews.
Seven axes emerged from the analyses, showing that control over symptoms gradually leads to deterioration of marital interactions and to the components of marital dissolution.
Dementia is a challenge in our society, with individuals accessing services across multiple settings. Carers are navigating and delivering care services in the home. This research sought to investigate the experiences of people with dementia and their carers when transitioning home from hospital.
This study used a qualitative descriptive design, employing in-depth interviews with 30 carers recruited through networks known to one state branch of Alzheimer’s Australia. Emerging themes were validated in one focus group.
During the hospital stay carers experienced a paradox: being required to deliver care yet perceiving that they were being ignored in regard to decisions about care. The time in hospital was considered by some carers to be stressful, as they were concerned about the safety of the person with dementia. Many reported that discharge home was rarely planned and coordinated. Returning home carers found re-establishing and/or accessing new services challenging, with available services often inappropriate to need.
The paradox of the care experience in the acute setting, whereby the carer was either invited, or sought, to deliver care, yet was excluded in staff decisions about that care, challenges the current communication and coordination of care. For people with dementia and their carers, there is a need for a coordinated seamless service that enables continued unbroken care and support from acute care to home. Carers also need support navigating the wide range of services available and importantly both carers and care providers may need to understand service boundaries.
This study highlights the need to acknowledge the expertise of the carer, and their need for support. Enabling a smooth discharge from hospital and support to navigate care access in the community is paramount. These experiences provide insight into gaps in service provision and modifying existing services may lead to improved experiences.
Due to changing cognitive and functional capabilities, individuals with dementia face challenging care-related issues such as feelings of embarrassment, relationship strain, and symptoms of depression and anxiety. Limited research exists examining individuals with dementia's perceptions and concerns about these issues and how their perspectives can impact the quality and process of their illness experience.
As part of a larger study, individuals with dementia (n = 114) answered five open-ended questions about their illness experience including: (1) daily routine, (2) concerns about memory loss, (3) relationships with others, (4) fears, and (5) what they wish others understood/knew. For each question, individuals with dementia’s responses were analyzed for common themes within and across questions.
Individuals with dementia commented on a wide range of issues involving their memory loss, including negative emotional impacts, future concerns and illness progression, forgetting, loss of independence, and the negative and positive influences on interpersonal relationships. Across questions, many individuals also stated that their memory loss did not significantly impact their lives.
Discussion highlights how these findings can be used to expand our understanding of individuals with dementia's illness experience and to develop efficacious interventions for addressing negative aspects of living with memory loss while supporting positive aspects.
The ability to perform instrumental activities of daily living deteriorates early in dementia and affects people with dementia and their carers. However, little is known about individual instrumental activities of daily living impairments. This study therefore investigated instrumental activities of daily living deficits in mild dementia by exploring the relationship between instrumental activities of daily living initiative and performance and general cognition, people with dementia quality of life and carer stress. Moreover, this study explored the contribution of social instrumental activities of daily livings, which to date have received little or no attention.
Twenty carers were administered a revised Interview for Deterioration for Daily Living Activities in Dementia and measures of carer stress (General Health Questionnaire-12) and quality of life in dementia (Quality of Life in Alzheimer’s Disease). The people with dementia completed measures of general cognition (Mini-Mental State Examination and Montreal Cognitive Assessment). Data were analysed using frequency and bivariate correlation analyses and basic thematic analysis was employed to the qualitative data on carer stress.
Carer interviews showed that instrumental activities of daily living impairments were associated more with performance than with initiative deficits. Increased social isolation and reluctance to engage in hobbies were particularly stressful to carers and impacted negatively on the people with dementia quality of life, yet were not reported as critical in the qualitative assessment.
This study shows that people with mild dementia are impaired to different degrees on their initiative and performance of instrumental activities of daily livings and that impairments relating to social activities particularly relate to well-being. The revised Interview for Deterioration for Daily Living Activities in Dementia with its social instrumental activities of daily livings can help shift the focus of interventions to address those activities that are frequently impaired in mild dementia and relate to people with dementia and carer well-being.
To develop a new measure of dysfunctional thoughts for family caregivers of people living with dementia. These thoughts can contribute to negative outcomes, but they may be modifiable.
A stepwise process was used to develop the Thoughts Questionnaire, commencing with item generation, concept mapping, and pilot testing in a sample of professional and nonprofessional caregivers of people with dementia (n = 18). Next, an independent sample of 35 family caregivers of people with dementia (30 female; M age = 64.30, standard deviation = 10.65) completed: (a) the Thoughts Questionnaire; (b) an existing measure of dysfunctional thoughts, the Dementia Thoughts Caregivers Questionnaire; and (c) separate validated measures of depressive symptoms, caregiver stress, and coping, respectively.
The level of agreement with dysfunctional thought statements from the Dementia Thoughts Caregivers Questionnaire and Thoughts Questionnaire was low. However, a small number of Thoughts Questionnaire statements were strongly endorsed by over 85% of the sample. Both dysfunctional thought measures had adequate reliability, but total scores were not significantly intercorrelated (r = .287, p = .095). Only the Thoughts Questionnaire was significantly, positively correlated with most caregiver stress measures. Thoughts Questionnaire items required a much lower reading level than the Dementia Thoughts Caregivers Questionnaire items.
This study provides preliminary data on a tool for assessing the negative role-related thoughts that family caregivers of people with dementia may experience. Given that these thoughts are implicated in depression but they may be modified, the capacity to identify dysfunctional thoughts may prove useful in caregiver support programs.
This research investigated narrative production and use with families living with dementia. We hypothesised that the process of narrative production would be beneficial to people with dementia and carers, and would elicit important learning for health and social care professionals.
Through third sector partners, we recruited community-dwelling people with dementia and carers who consented to develop written, audiotaped or videotaped narratives. Audio-taped narratives were transcribed verbatim and handwritten narratives word-processed. After checking by participants, completed narratives were analysed thematically using qualitative data analysis computer software. A summary of the analysis was circulated to participants, inviting feedback: the analysis was then reviewed. A feedback questionnaire was subsequently circulated to participants, and responses were analysed thematically.
Twenty-one carers and 20 people with dementia participated in the project. Four themes of support were identified: ‘relationships’, ‘services’, ‘prior experience of coping’ and having an ‘explanation for the dementia’. Three themes were identified as possible additional stresses: ‘emotions’, ‘physical health’ and ‘identity’. We suggest a model incorporating all these themes, which appeared to contribute to three further themes; ‘experience of dementia’, ‘approaches to coping’ and ‘looking to the future’. In participant feedback, the main themes identified were ‘emotions’, ‘putting things in perspective’, ‘sharing or not sharing the narrative’ and ‘actions resulting’.
Producing a narrative is a valuable and engaging experience for people with dementia and carers, and is likely to contribute to the quality of dementia care. Further research is needed to establish how narrative production could be incorporated into routine practice.
Although the cause and the cure for dementia remain unknown, it is clear that environmental factors can offer relief of cognitive impairment and encourage emotional stability. The purpose was to explore dementia patients’ experiences of a media presentation including images of nature. Combining a qualitative approach with quantitative data analysis, the project exposed 23 participants to slide show presentations of fascinating natural scenes over 4 weeks. The patients’ feelings and experiences of the media presentations were investigated using semistructured interviews and daily chart reviews in which weekly behavioral changes. The experience of natural scenes in dementia patients’ everyday atmosphere became a new and positive aspect of life at the long-term nursing facility, although the quantitative data did not significantly change during the project. This treatment could provide dementia patients with a nurturing relationship, making nature a supportive part of their everyday experience.
End of life decisions for people with advanced dementia are reported as often being difficult for families as they attempt to make appropriate and justified decisions.
To explore the experiences of advance care planning amongst family caregivers of people with advanced dementia.
Qualitative research including a series of single cases (close family relatives).
A purposive sample of 12 family caregivers within a specialist dementia unit was interviewed about their experiences of advance care planning between August 2009 and February 2010.
Family caregivers need encouragement to ask the right questions during advance care planning to discuss the appropriateness of nursing and medical interventions at the end of life.
Advance care planning can be facilitated with the family caregiver in the context of everyday practice within the nursing home environment for older people with dementia.
Knowledge concerning professionals involved in dementia care throughout its trajectory is sparse; the focus has mainly been on nursing-home care and less on home care, diagnosis and treatment of the disease and its complications despite the fact that home care is the most prominent type of care. The aim of this study was to explore and describe professional care providers involved in dementia care and their educational level applying the International Standard Classification of Education (ISCED) and further to investigate practice in the RightTimePlaceCare-countries with regard to screening, diagnostic procedures and treatment of dementia and home care. The findings demonstrate more similarities than differences in terms of type of professionals involved among the countries although untrained staff were more common in some countries. Findings also show that many types of professionals are involved, who to turn to may not be clear, for instance in terms of medical specialities and it may be unclear who bears the ultimate responsibility. The professionals involved in diagnosis, treatment and care are educated to bachelor’s level or above whilst everyday care is provided by people trained at a lower ISCED level or with no formal training. Registered nurses as well as occupational therapists have bachelor’s degrees in most countries, but not in Germany or Estonia. Professionals specifically trained in dementia care are not so common. Further research is needed to reveal not only who provides the diagnostics and treatment, but also how home care is organised and quality assured. Many different types of professionals serve as providers along the trajectory of the disease which may be difficult for the patient and the informal caregiver to cope with.
Many people living with dementia are supported at home using a variety of health and social care services. This paper reports the findings from a focus group study undertaken with staff in community mental health teams to explore areas for improvement in relation to national policies and recommendations for dementia care. Two focus groups were held with staff (n = 23) in 2011 to discuss topics including service delivery, information and communication, and provision of health and community care for people with dementia. Respondents identified problems with information sharing and incompatible electronic systems; inflexibility in home care services; and poor recognition of dementia in hospital settings. General practitioners had developed a greater awareness of the disease and some community services worked well. They felt that budgetary constraints and a focus on quality indicators impeded good dementia care. Key areas suggested by staff for improvements in dementia care included the implementation of more flexible services, dementia training for health and social care staff, and better quality care in acute hospital settings.
There are a number of therapies currently available to assist healthcare professionals and carers with non-pharmacological treatment for people living with dementia. One such therapy that has been growing in clinical practice is doll therapy. Providing dolls to some people living with dementia has the potential to enhance personal well-being through increased levels of communication and engagement with others. Despite its potential for benefits, the practice is currently under-developed in healthcare literature, probably due to varied ethical interpretations of its practice.
To undertake a critical review of the published literature on doll therapy, using the Critical Appraisal Skills Programme Checklist (CASP) tool, in order to determine the potential benefits and challenges of this therapy for people living with dementia.
A comprehensive literature search, incorporating the CINAHL, Medline, Embase, PubMed, Joanna Briggs, Cochrane Library and PsycINFO data bases, was conducted.
Despite many commentaries and anecdotal accounts of the practice, this review identified only 11 empirical studies that were eligible. The majority of studies found that the use of dolls could be therapeutic for some people living with dementia by reporting increased levels of engagement, communication and reduction in episodes of distress. Some studies identified limitations to the therapy including; confusion over the ownership of the doll and healthcare professional uncertainty about issues pertaining to autonomy.
According to this review, doll therapy has the potential to increase the well-being of some people living with dementia. This review illuminates that some healthcare professionals feel uncomfortable about its use in clinical practice. The operationalisation of doll therapy in clinical practice has been shown to be inconsistent with different approaches to the practice being advocated. This highlights the need for further empirical research to identify best practice and education to increase awareness in both healthcare professional and carer populations.
Cognitive impairment (CI) is one of several factors known to influence hospitalization, hospital length of stay, and rehospitalization among older adults. Redesigning care delivery systems sensitive to the influence of CI may reduce acute care utilization while improving care quality. To develop a foundation of fundamental needs for health care redesign, we conducted focus groups with inpatient and outpatient providers to identify barriers, facilitators, and suggestions for improvements in care delivery for patients with CI.
Focus group sessions were conducted with providers to identify their approach to caring for cognitively impaired hospitalized adults; obstacles and facilitators to providing this care; and suggestions for improving the care process. Using a thematic analysis, two reviewers analyzed these transcripts to develop codes and themes.
Seven themes emerged from the focus group transcripts. These were: (1) reflections on serving the cognitively impaired population; (2) descriptions of perceived barriers to care; (3) strategies that improve or facilitate caring for hospitalized older adults; (4) the importance of fostering a hospital friendly to the needs of older adults; (5) the need for educating staff, patients, and caregivers; (6) the central role of good communication; and (7) steps needed to provide more effective care.
Providing effective acute care services to older adults with CI is an important challenge in health care reform. An understanding derived from the perspective of multiple professional disciplines is an important first step. Future research will build on this preliminary study in developing new acute care models for patients with CI.
During a 15-month period between February 2010 and April 2011, video data on (n = 38) people with dementia were collected during a person-centered and intergenerational arts activity program called Opening Minds through Art (OMA) at three different long-term care facilities in Ohio. A subsample of the OMA participants (n = 10) were also video recorded during traditional visual arts activities (e.g. coloring books, scrapbooking). A modified version of the Greater Cincinnati Chapter Well-Being Observation Tool© was used to code the intensity and frequency of observed domains of well-being (i.e. social interest, engagement, and pleasure) and ill-being (i.e. disengagement, negative affect, sadness, and confusion). Descriptive results indicate a high percentage of moderate or high intensities of well-being during OMA sessions with little to no ill-being. Paired-sample t-tests comparing OMA vs. traditional visual arts activities showed significantly higher intensity scores for OMA in the domain of engagement and pleasure, as well as significantly lower intensity scores for disengagement. The findings of this exploratory study contribute to the overall discussion about the impact of person-centered, creative-expressive arts activities on people with dementia.
This longitudinal, exploratory study was designed to better understand the lived experience of spousal caregivers age 60 and older providing care to partners with Alzheimer’s disease and related dementias resident in a care facility. Twenty eight spousal caregivers were interviewed up to three times over a period of 2 years, and long-term care facility staff from four locations across British Columbia (BC), Canada participated in four focus groups. Thematic analysis of interview and focus group transcripts revealed a central, unifying theme ‘together but apart’. The results identify key targets for policy makers and service providers to support positive health and well-being outcomes for spousal caregivers providing care to their partners diagnosed with Alzheimer’s disease and related dementia and living in care facilities.
The Mental Capacity Act 2005 provides the legal framework in England and Wales for the making of decisions in respect of people who have never had or have lost decision-making capacity. As part of a 5-year research program investigating the implementation and adoption of the Mental Capacity Act in dementia practice, we interviewed staff working in different care homes at two time points (32 staff at Time 1 in 2008 and 27 staff at Time 2 in 2012) in South East England. At baseline Time 1, daily practice seemed to resonate with Mental Capacity Act principles of respecting decisions and trying to act in a person’s best interests. This paper reports Time 2 findings. We found that few care home staff interviewed specifically reported finding the Mental Capacity Act helpful in crystallizing the legal basis of their work. Most continued to offer illustrations of day-to-day practice in which they paid attention to individual choices, took account of the wishes of residents’ families, and tried to act in residents’ best interests but referred major decisions to their seniors. This study highlights the potential of referring to specific day-to-day practice in care homes when offering training or scrutinizing practice in dementia care more generally so that the work is set in its legal as well as moral framework. Care home staff in this study reported that advanced planning and pre-specifying preferences were more common among new care home residents, especially those with dementia, indicating that greater understanding of these is required by staff.
The dynamic nature of psychosocial interventions implies that trying to measure their effects using standardised clinical trial measures may not capture their full effects. Rich and valuable data during the sessions may be missed by using standard quality of life questionnaires. This paper compares observational measures in the context of recording the well-being of a person with dementia during and outside of a visual arts intervention. A literature search was conducted using systematic principles of searching, screening and retrieval to identify peer-reviewed English language evaluations of research projects using observational measures with people with dementia. Psychometric properties, strengths and weaknesses of 11 observational tools are reviewed in order to identify the most appropriate one for evaluating a visual art intervention for people with dementia. This review supports the Greater Cincinnati Chapter Well-Being Observation Tool as an appropriate measure to evaluate a visual art programme for people with dementia. The results of this review will help researchers plan projects to show the full range of effects for people with dementia for taking part in art sessions.
Photography is a tool that has been used in research for many years. It allows people to create a record of an event, capture a complex phenomenon or to tell a story with pictures. Because it does not rely on language, it can be used with vulnerable populations who might not normally be included in research. This paper discusses the use of photography as one component of the evaluation strategy for a project that provided an opportunity for people with younger onset dementia to return to the workplace one day per week. Participants in the workplace project used photography to create a record of their experience of returning to the workplace. Based on the nature of the participant’s comments, photographs were grouped into four broad areas: impact of dementia, impact on family, the work experience and new friends. Issues related to the use of photography with people who have dementia are explored based on the experiences gained during this project.
Caregiving in a rural context is unique, but the experience of rural caregivers is understudied. This paper describes how rural caregivers cope with caring for a loved one diagnosed with mild cognitive impairment or dementia using qualitative description to generate a low-inference summary of a response to an open-ended question. This approach allowed these rural caregivers to describe their positive experiences in addition to the more commonly explored caregiver experiences related to stress. Analyses of coping revealed use of social support, engaging in relaxing and physical activity, and cognitive reframing. In addition, caregivers reported strong faith and religiosity, and to a lesser frequency behavioral changes, checking in with the person with dementia via telephone, and joint activity. Predominantly, these methods reflect approach-based strategies. The current data suggest that these caregivers manage well and adopt adaptive coping strategies to meet the demands of the caregiving role.
The topic of well-being is becoming increasingly significant as a key outcome measure in dementia care. Previous work on personhood of individuals with dementia suggests that their subjective well-being can be described in terms of comfort, inclusion, identity, occupation and attachment. The study aimed to examine Tom Kitwood’s model of psychological needs and well-being in dementia based on the self-report of individuals with moderate or severe dementia and to differentiate and elaborate this model in the light of the empirical qualitative data. Nineteen inhabitants of a special long-term care unit were interviewed using a semi-structured interview. Data were analysed using content analysis. Thirty components within Kitwood’s model have been identified. A conceptual framework of subjective well-being in dementia was developed based on a theoretical background. The study was able to find indications that Kitwood’s model has empirical relevance. Nevertheless, it requires to be extended by the domain agency. Furthermore, the study suggests that individuals with dementia are important informants of their subjective well-being.
One in 15 Australians over 65 experience dementia, and are commonly supported by spouses. Evidence demonstrates declining wellbeing for these caregivers as their role continues. There are indications of improvement once caregivers transition out of the role (recovery) but alternate suggestions that caregiving stress may be too damaging to be appeased (wear and tear). It seems plausible that reason for transition (care recipient’s move into residential care or death) will affect caregivers’ outcomes. A synthetic cohort method compared caregivers’ stress and wellbeing prior to, and one and two years post-transition. There was evidence of wear and tear for physical wellbeing but recovery for psychological wellbeing over time; with little difference based on reason for transition. Caregiver outcomes seem to be a function of the action rather than the reason for transition, but factors such as age must be considered when designing methods to support post-transition wellbeing.
The increasing numbers of people with dementia in the UK, as well as the associated costs have led to an effort to improve dementia services for the benefit of patients, caregivers and the taxpayer. These efforts have frequently emphasised the importance of early diagnosis in dementia care. We sought to test the hypotheses that the mean cognitive score of new referrals to a secondary care memory assessment service increased while mean age decreased over a period of 20 years. We retrospectively analysed the data of 1476 patients. The passage of time was associated with a significant increase in mean cognitive scores, while there was no association between time and age after controlling for other factors. We suggest that memory services need to be designed to meet the needs of less cognitively impaired patients. In practice this means that using simple screening tests is not sufficient in this group of patients.
This study explored staff perceptions of the role of physical environment in dementia care facilities in affecting resident’s behaviors and staff care practice. We conducted focus groups with staff (n = 15) in two purposely selected care facilities in Vancouver, Canada. Focus group participants included nurses, care aides, recreation staff, administrative staff, and family. Data analysis revealed two themes: (a) a supportive physical environment contributes positively to both quality of staff care interaction and residents’ quality of life and (b) an unsupportive physical environment contributes negatively to residents’ quality of life and thereby makes the work of staff more challenging. The staff participants collectively viewed that comfort, familiarity, and an organized space were important therapeutic resources for supporting the well-being of residents. Certain behaviors of residents were influenced by poor environmental factors, including stimulation overload, safety risks, wayfinding challenge, and rushed care. This study demonstrates the complex interrelationships among the dementia care setting’s physical environment, staff experiences, and residents’ quality of life.
The concerning phenomena of spatial disorientation and wayfinding difficulties among elders with Alzheimer’s disease or a related dementia in assisted living residences are understudied. This qualitative study aimed to identify the types of wayfinding difficulties as experienced by residents with memory-loss in two special care units of an assisted living residence. The data collection period included participant observation complemented by semi-structured interviews with care staff and managers and review of clinical records. A wide spectrum of wayfinding difficulties was identified as experienced by six residents. The residents experienced difficulties reaching several destinations on the units. The implications of the findings to practice, architectural design, and policy are discussed.
This paper reviews recent literature on the experiences, attitudes and needs of caring for someone with dementia in Black and minority ethnic communities in the United Kingdom. Eight articles, which investigated carer experiences from Black and minority ethnic communities when caring for someone with dementia, were critically appraised. All eight studies used a qualitative methodology. The review identified several themes and issues across the qualitative studies. These included memory loss being viewed as a normal process of ageing, care being perceived as an extension of an existing responsibility, a poor understanding of what support services provide, the influence of migration, the impact of stigma and increased female responsibility. Methodological limitations of the research literature studies are also highlighted and clinically relevant implications are discussed, alongside recommendations for future research in this area.
A case study comprised of formal interviews, formal observations and informal discussions investigated the motivations and experiences accessing dementia care health and social care services for a Muslim, Pakistani male with dementia. Motivations derived from ‘desperation’ and an inability to access support from family or religious community. Experiences of accessing services were mostly negative. Dementia services were ill-informed about how to support persons with young onset dementia, with pre-existing mental health conditions, from an ethnic minority. Education and training to remove barriers to all dementia care services is required for persons with dementia, their families and within dementia services and religious communities.
The Scottish Dementia Working Group Research Sub-group is part of the Scottish Dementia Working Group, an internationally renowned campaigning group of people with dementia. We co-created our core principles for involving people with dementia in research between September and December 2013. The principles address six areas: (i) how people with dementia are valued and involved in research, (ii) lived experience as valid knowledge, (iii) physical and emotional safety, (iv) accessibility of all aspects of research, (v) training for researchers and (vi) the impact of our experiences of time on research processes. Through our core principles, we challenge researchers across all disciplines to re-consider how we and other people with dementia are involved in research as well as how knowledge in dementia research is created.
In this review we explore the provision of assistive technology products and services currently available for people with dementia within the United Kingdom. A scoping review of assistive technology products and services currently available highlighted 171 products or product types and 331 services. In addition, we assimilated data on the amount and quality of information provided by assistive technology services alongside assistive technology costs. We identify a range of products available across three areas: assistive technology used ‘by’, ‘with’ and ‘on’ people with dementia. Assistive technology provision is dominated by ‘telecare’ provided by local authorities, with services being subject to major variations in pricing and information provision; few currently used available resources for assistive technology in dementia. We argue that greater attention should be paid to information provision about assistive technology services across an increasingly mixed economy of dementia care providers, including primary care, local authorities, private companies and local/national assistive technology resources.
While there is considerable evidence on the impact of specific design features on problems associated with dementia, the link between the quality of the built environment and quality of life of people with dementia is largely unexplored. This study explored the environmental and personal characteristics that are associated with quality of life in people with dementia living in residential aged care. Data were obtained from 275 residents of 35 aged care homes and analysed using linear regression. The quality of the built environment was significantly associated with the quality of life of the resident measured by global self-report. Environmental ratings were not associated with proxy or detailed self-report ratings. Higher quality of life is associated with buildings that facilitate engagement with a variety of activities both inside and outside, are familiar, provide a variety of private and community spaces and the amenities and opportunities to take part in domestic activities.
This report will elucidate the psychometric properties of the Cultural Justifications for Caregiving Scale (CJCS) and evaluate the differences in cultural values and demographic variables among a group of African American and White caregivers. The CJCS measures the cultural reasons for and expectations about providing care to an older relative.
CJCS data were collected from 202 adults caring for an older relative with memory loss. The factor structure of the CJCS was analyzed for reliability and its correlation with other measures pertaining to the caregiving experience.
Exploratory factor analyses suggested two underlying factors relating to Duty and Reciprocity with high levels of reliability. The two factors showed different correlational patterns with other measures associated with the caregiving experience (CG demographics and well-being).
Findings provide further evidence that the CJCS is a reliable measure for use with African American and White caregivers. Moreover, cultural motivations to provide care may differ for ethnically diverse CGs based on religious backgrounds and beliefs about family expectations surrounding the care of loved ones. The application of the CJCS is also discussed.
Reminiscence therapy has the potential to improve quality of life for people with dementia. In recent years reminiscence groups have extended to include family members, but carers’ experience of attending joint sessions is undocumented. This qualitative study explored the experience of 18 family carers attending ‘Remembering Yesterday Caring Today’ groups. Semi-structured interviews were transcribed and subjected to thematic analysis. Five themes were identified: experiencing carer support; shared experience; expectations (met and unmet), carer perspectives of the person with dementia’s experience; and learning and comparing. Family carers’ experiences varied, with some experiencing the intervention as entirely positive whereas others had more mixed feelings. Negative aspects included the lack of respite from their relative, the lack of emphasis on their own needs, and experiencing additional stress and guilt through not being able to implement newly acquired skills. These findings may explain the failure of a recent trial of joint reminiscence groups to replicate previous findings of positive benefit. More targeted research within subgroups of carers is required to justify the continued use of joint reminiscence groups in dementia care.
The current exploratory investigation aims to establish the reliability and validity of a hope measure, the Herth Hope Index, among families impacted by early cognitive impairment (N = 96). Exploratory factor analysis was used to examine the dimensionality of the measure. Bivariate analyses were used to examine construct validity. The sample had moderately high hope scores. A two-factor structure emerged from the factor analysis, explaining 51.44% of the variance. Both factors exhibited strong internal consistency (Cronbach’s alphas ranged from .83 to .86). Satisfaction with social support was positively associated with hope, supporting convergent validity. Neurocognitive status, illness insight, and depression were not associated with hope, indicating discriminant validity. Families impacted by cognitive impairment may maintain hope in the face of a potentially progressive illness, regardless of cognitive status. The Herth Hope Index can be utilized as a reliable and valid measure of hope by practitioners providing support to families impacted by cognitive impairment.
Younger onset dementia (YOD) not only affects the person with the diagnosis but the whole family, which often includes young people. A limited body of research on this group of young people indicates that they experience varying degrees of emotional trauma. We explored the lived experiences of young people having a parent with YOD from the perspective of the social model of disability. Data were available from semi-structured interviews with 12 young people who had a parent with YOD looking at their lived experiences between 8 and 24 years. Thematic analysis identified four main themes: the emotional toll of caring, keeping the family together, grief and loss and psychological distress. The social model of disability theory provides a helpful framework for these families who experience significant emotional distress, demonstrating that the disability is often socially constructed by a society, which marginalizes and excludes them. A ‘whole family’ approach is proposed, where the needs of young people and their parents are respected and responded to age appropriately.
Research shows that people with late-onset dementia and their relatives can benefit from using assistive technology (AT). Few researchers have investigated the use and utility of AT in everyday life for younger people with dementia (YPD) and their family carers. The aim of this study is to explore what characterised the implementation process when the AT was experienced as beneficial to the YPD and the family carer in their daily life. The qualitative longitudinal study followed 12 younger people (i.e. those under 65 years of age), who had recently been diagnosed with dementia and 14 of their family carers. In-depth interviews and observations during the process were conducted at the beginning, and were repeated every 3rd month for up to 12 months. The data were analysed, and the participants’ experiences further discussed on the basis of embodied, social- and everyday life-situated approaches, in order to provide a deeper understanding of the interactive processes involved in the trajectory. Five elements in the process were identified as important for the experience of usefulness and successful incorporation of AT. The AT had to: (1) be valuable by addressing practical, emotional, and relational challenges; (2) fit well into, or be a better solution for, habitual practice and established strategies; (3) generate positive emotions, and become a reliable and trustworthy tool; (4) be user-friendly, adaptable, and manageable; and (5) interest and engage the family carer. The study demonstrated the importance of understanding the use and utility of AT on the basis of embodied and social participation in daily life. The family carers played a significant role in whether or not, and in which ways, AT was absorbed into the everyday life practice of YPD.
Dignity is seen as an essential need, fundamental right, and inherent quality of each human being. There is however, a need for increased knowledge on crucial dimensions constituting dignity experience in persons living with dementia. This study explored personal dimensions of life which persons with dementia perceived crucial for experiencing dignity in their daily lives. Based on the findings of eight empirical sub-dimensions, three main dimensions crucial for constituting dignity experience, were identified through hermeneutical interpretation: A historical dignity-dimension, acknowledging one’s own life-projects and life-history; an intrapersonal dignity-dimension, recognizing one’s own human worth, and living according to internal values; and an interpersonal dignity-dimension, experiencing being part of a caring and confirming communion. Knowledge of dignity preservation should be a crucial foundation for future dementia care.
Peer support is well established in fields such as the disability movement and mental health and is increasingly recognised as one way of enabling support by and for people with a diagnosis of dementia and their immediate carers. It was central to the implementation of the National Dementia Strategy (NDS) for England, when 40 demonstration sites were established. This mixed-methods study included in-depth qualitative interviews with people living with dementia (n = 101) and staff/stakeholders (n = 82) at 8 of the 40 sites. Data analysis was a five-stage process: coding framework developed (using 25 transcripts); further development of the framework (using a further 70 transcripts); development of emerging themes; modelling of themes and verification of models based on the entire data set. Peer support had positive emotional and social impact that was rooted in identification with others, a commonality of experience and reciprocity of support. There was also a contrast between the quality of peer support and support from professionals. This emphasises the significance of lived experience and promoting a strength-based approach to interpersonal support that is enabling and challenges a deficit approach to understanding dementia.
The ‘Snoezelen’ is an approach based on stimulation and sensory stimulation proposals, giving priority to the notion of caretaking. The aim of this paper is to present the creation and validation of the COMMUNI-CARE scale. This is a new tool that allows for an evaluation of the psycho-emotional well-being that the patient with dementia shows in a ‘Snoezelen’ multisensory stimulation environment.
In total 429 evaluations in 143 multisensory stimulation interventions were made using the COMMUNI-CARE scale, in 16 patients between 53 and 85 years of age, diagnosed with moderate to severe dementia. The goal was to evaluate the psycho-emotional well-being the patients present.
The tool’s internal consistency showed a Crombach alpha of 0.90. The concurrent validity between the COMMUNI-CARE scale and the Clinical Global Impression (CGI) was of r = –0.961. The Kappa index used to determine the reliability between evaluators was of K = 0.87.
The COMMUNI-CARE scale fulfills the basic principles of classic psychometrics of construct, and criterion validity and reliability. It does so while showing a clear idea, through its five subscales (anxiety, communication, pleasure, adaptation to the surroundings and affection), of the degree of well-being that the patient with dementia shows during such interventions. This scale embodies, through psychometrics, a very subjective human experience with a tool unavailable to date.
Arts for health initiatives and networks are being developed in a number of countries and an international literature is emerging on the evidence of their benefits to people's health, wellbeing and quality of life. Engagement in cultural and creative arts by older people can increase their morale and self-confidence and provides opportunities for social connection. Museums and galleries are increasingly required to justify their expenditure, reach and impact and some are working in partnership with local councils, hospitals, schools and communities to improve access to their collections. There is a body of literature emerging that describes such initiatives but empirical evidence of their benefits is less developed. This article reports an evaluation of an art for health initiative – Coffee, Cake & Culture organised and delivered by Whitworth Art Gallery and Manchester Museum in 2012 for older people living in a care home and a supported living facility. The study has identified the benefits and impacts of the arts for health programme and its feasibility for older people, with or without diagnosed memory loss – dementia, living in a care home or supported living facility and their care staff. The findings demonstrate there were benefits to the older people and their care staff in terms of wellbeing, social engagement, learning, social inclusion and creativity. These benefits were immediate and continued in the short term on their return home. The majority of older people and care staff had not previously been to the art gallery or museum and the programme encouraged creative arts and cultural appreciation which promoted social inclusion, wellbeing and quality of life. The programme is feasible and important lessons were identified for future planning. Further research involving partnerships of researchers, arts for health curators, artists, care staff, older people and their families is warranted.
Apathy is one of the most frequent and early symptoms of dementia. Because apathy is characterised by lack of initiative and motivation, it leads to considerable burden being placed on carers to ensure that the person living with dementia has a reasonable quality of life. The aim of this study was to investigate the relationship between apathy and participation in therapeutic activities for older people with dementia living in nursing homes. Ninety residents were recruited into the study, and apathy was measured by nursing home staff using the Apathy Evaluation Scale Clinician version. Staff also compiled data on each resident’s involvement in therapeutic activities. Among this sample, the mean age was 84.8 years, and mean length of stay in the nursing home was 1.8 years. The mean apathy score was 50.4, indicating that on average the residents had a moderate level of apathy. Overall, residents participated in six activities per week and those residents who were involved in the most activities had the lowest levels of apathy. This paper provides evidence that residents involved in therapeutic activities have lower levels of apathy. Further research should be conducted on the direction of causality, whether apathy levels can be changed through participation in therapeutic activities, the relationship between dementia severity and modifiability of apathy, and the intensity of therapeutic activities required to maintain functioning.
Longstanding concerns about quality care provision, specifically in the area of long-term care, have prompted calls for changing the culture of care to reflect more client-driven and relationship-centred models. Despite an increase in culture change initiatives in both Canada and the United States, there is insufficient information about the theories and approaches that guide culture change. The purpose of this paper is to describe a culture change initiative currently underway in Canada, the Partnerships in Dementia Care Alliance, and the theoretical foundations informing our work. More specifically, we describe how the theoretical and philosophical underpinnings of the Alzheimer Disease and Related Dementias framework, the authentic partnership approach, participatory action research and Appreciative Inquiry have been integrated to guide a culture change process that encourages working collaboratively, thinking and doing differently and re-imagining new possibilities for changing the culture of dementia care.
This article explores how the provision of information about dementia impacts on carers and the caring relationships in which they are involved. Narrative interviews were undertaken with 25 carers who had undertaken the Alzheimer’s Society – run Carer Information and Support Programme in one of seven sites across London and the South East. Thematic analysis identified two major themes relating to the impact of information on carer and caring relationships (‘understanding and care’ and ‘emotional impact of information’), and another theme relating to the context within which the information was provided and shared (‘relational practices in information-giving and receiving’). Findings suggest that while information, particularly in the form of new knowledge about how dementia progresses, helps to improve understanding and increase confidence, competence and a sense of security and achievement in caring practices, it can also confound and complicate caring practices in ways that reflect and reinforce previously difficult relationships. Providing information in the context of carers’ support was important for most participants but others were less able to benefit from this, especially where they felt unrecognised or where the timing of information felt inappropriate to their needs. Our analysis complements and extends previous scholarship emphasising the relational nature of care by showing how information can both enhance and complicate care relationships, depending on both specific care contexts and on how carers experience the context of information provision.
In 2011, the U.S. National Institute on Aging published guidelines for clinical diagnostics for Alzheimer’s disease dementia. These guidelines define a continuum with three stages—an early, pre-clinical stage with no symptoms, followed by mild cognitive impairment, and a final stage of Alzheimer’s disease dementia. This methodological critique examines the validity of this continuum. No studies exist showing the progression of these biomarkers to Alzheimer’s disease. There is also a lack of empirical evidence showing how biomarkers determine mild cognitive impairment, which has multiple etiologies. The guidelines fail to explain anomalies where there are biomarkers but no expression of Alzheimer’s disease.
There is a global need for interventions that help couples who are dealing with dementia. This paper describes the way in which interventionists from the United States and Japan participated in the development of an intervention for dyads in which one person is experiencing memory loss. The 5-week intervention, the Couples Life Story Approach, helps dyads to reminisce about their life together as a couple, to work on their patterns of communication, and to develop a Life Story Book. Based on an analysis of cases conducted in the United States (n = 20 couples) and Japan (n = 9 couples), this paper highlights the cross-fertilization process that has occurred as interventionists from the two countries have shared their experiences with one another. Using case illustrations, the discussion focuses on the clinical themes that have emerged for couples in the United States and Japan.
This qualitative study used semi-structured interviews to explore how six people talked about their difficulties before and after a dementia diagnosis. Participants’ accounts of their memory problems were analysed in terms of the verbal Markers of Assimilation of Problematic Voices Scale. This analysis indicated that after diagnosis some participants were able to integrate aspects of their illness that had previously been too painful, and which had been warded off. The process by which individuals were able to integrate a dementia diagnosis into their sense of self-involved stepping in and out of awareness, with both acceptance and denial featuring in their accounts as they approached and then retreated from addressing the diagnosis. In contrast, other participants resisted moving towards explicitly acknowledging their dementia but were instead able to express concerns about what this movement would entail, for instance voicing their fears that it would mean that they had surrendered. Social support seems to have been crucial in enabling participants to sustain a positive sense of self in the face of this adjustment.
Older adults living alone with dementia are at greater risk of placement in long-term care homes compared with those living with others. Healthcare professionals have vital roles in supporting them to continue living in the community. Yet, little is known about how healthcare professionals fulfill these roles and what their experiences are like. The study purpose was to describe health care professionals’ experiences of caring for older people with dementia living alone. Using a qualitative descriptive approach and qualitative content analysis method, 15 healthcare professionals were interviewed in Ontario, Canada. The overall theme of the findings, doing the best we can for them, involved discussing sensitive care issues with what professionals viewed as gentle realism. Walking the tightrope expressed tensions in meeting professional responsibilities. Constraints (my hands are tied) and boundaries (it’s not my job, it’s not my decision) described perceived limitations on professional roles. Effects of the emotional struggle involved in working with these older people were lessened by believing I did the right thing. The findings have implications for what we could do better for older people with dementia living alone, through integration of person-centered/relationship-centered principles in education programs, community agency policies, a national dementia care strategy, and culture change in community care.
Behavioral symptoms are common in all types of dementia and often result in significant caregiver stress and illness, institutionalization of the patient, and reduced quality of life for the patient and caregiver. Health care practitioners often lack the expertise or time to adequately assess behavioral symptoms or counsel caregivers about interventions. Our goal was to implement a specialty clinic managed by advanced practice nurses to assess and manage behavioral symptoms associated with dementia. The clinic evaluations consisted of an assessment of the patient by the Nurse Practitioner during the time that the family caregiver(s) was interviewed by the Clinical Nurse Specialist and focused on an assessment of the cognitive and functional abilities of the patient, identification of triggers for the problematic behaviors, and assessment of caregiver coping. We evaluated 66 dyads since implementation in February 2010. The patients were primarily female, Caucasian, 74.3 years of age with Alzheimer’s disease. The majority of caregivers were spouses (n = 44) followed by adult children (n = 20) and then siblings (n = 2). Targeted interventions were developed and caregiver counseling, support, and education were an integral part of the consultation and included written information, video instruction, and internet resources. Evaluations indicated caregivers and referring providers found the appointment helpful in managing behavioral symptoms and caregiver stress.
Providing support in the form of information, advice and access to services or social events is promoted as beneficial for people newly diagnosed with dementia and their families. This paper reports on key findings from an evaluation of a post-diagnostic support pilot project in Scotland addressing local service gaps, namely information provision, emotional and practical support and maintaining community links. Twenty-seven participants (14 people newly diagnosed with dementia and 13 family carers) were interviewed at two time points: T1 shortly after joining the pilot project and T2 approximately six months later, to ascertain their views on existing services and the support offered by the pilot project. A comparative thematic analysis revealed that the project facilitated increased independence (associated with increased motivation and self-confidence) of people with dementia. The project illustrates what can be achieved if resources are targeted at providing individualised post-diagnostic support, particularly where there are service delivery gaps.
Dementia is a global health issue and the effects on caregivers are substantial. The study aimed to examine the associations of burden, coping, self-efficacy with quality of life among family caregivers of persons with dementia in Singapore. Structured interviews were conducted in a convenience sample of 84 family caregivers caring and seeking clinical care for the persons with dementia in an outpatient clinic of a public hospital in Singapore. The outcome measures included the Family Burden Interview Schedule, Family Crisis Oriented Personal Evaluation Scale, General Perceived Self-Efficacy Scale, and World Health Organization Quality of Life Scale – Brief Version. In general, significant correlations were observed between the quality of life scores with coping strategy and family burden scores, but not between the coping strategy and family burden scores. Compared to demographic factors such as caregiver age and household income, psychosocial factors including family burden, coping strategies, and self-efficacy demonstrated greater association with quality of life in the participants. However, the dynamics of these associations will change with an increasing population of persons with dementia, decreasing nuclear family size, and predicted changes in family living arrangements for the persons with dementia in future. As such, it necessitates continuous study examining the needs and concerns of family caregivers and the relevance of ongoing interventions specific to caregivers of persons with dementia.
This study explored how the relatives of people with Alzheimer’s disease expressed Self 2 and Self 3 according to Harré’s social constructionist theory of selfhood. Having a relative with Alzheimer’s disease affects one’s life. In this study, we concentrated on how close relatives of people with Alzheimer’s disease experienced their sense of self. This study was descriptive and qualitative. Interviews were conducted with 20 relatives of 10 people with Alzheimer’s disease from 2009 to 2011. The data were analysed according to Harré’s social constructionist theory of selfhood including Selves 2 and 3. Participants reported that Alzheimer’s disease challenged their personal attributes, relations and positioning. Understanding how Alzheimer’s disease affects the sense of self among close relatives is important, as this knowledge is pivotal for supporting these relatives who are often informal caregivers in ways that enable a fulfilling and meaningful life.
This paper summarises a literature review focusing on the literature directly pertaining to the acute care of older people with dementia in general hospitals from 2007 onwards. Following thematic analysis, one overarching theme emerged: the consequences of being in hospital with seven related subthemes. Significantly, this review highlights that overall there remains mostly negative consequences and outcomes for people with dementia when they go into general hospitals. Although not admitted to hospital directly due to dementia, there are usually negative effects on the dementia condition from hospitalisation. The review suggests this is primarily because there is a tension between prioritisation of acute care for existing co-morbidities and person-centred dementia care. This is complicated by insufficient understanding of what constitutes person-centred care in an acute care context and a lack of the requisite knowledge and skills set in health care practitioners. The review also reveals a worrying lack of evidence for the effectiveness of mental health liaison posts and dementia care specialist posts in nursing. Finally, although specialist posts such as liaison and clinical nurse specialists and specialist units/shared care wards can enhance quality of care and reduce adverse consequences of hospitalisation (they do not significantly) impact on reducing length of stay or the cost of care.
The Department of Health has increased the emphasis on earlier detection of dementia among patients aged over 75 admitted to hospital in an emergency in England. Introduction of a Commissioning for Quality and Innovation (CQUIN) payment provides an incentive for NHS Trusts to screen patients for memory problems on admission. This article reports on how improvements were made to the screening process across three wards in a large university teaching hospital.
Statistics show that an increase in the statutory retirement age in the UK will mean that many more people will develop a dementia while still in employment. A review of the literature confirmed that there are no existing studies in the UK which examine this issue in any detail. The aim of this study was to investigate the experiences of people who develop a dementia while still in employment and to understand how they make sense of these experiences; therefore a qualitative explorative inquiry based on an Interpretive Phenomenological Analysis methodology was used. Interviews with five people who had developed a dementia while still in employment were carried out, with ages ranging from 58 to 74 years. Interview transcripts were analysed and four super-ordinate themes were identified: the realization that something is wrong; managing the situation in the workplace; trying to make sense of change; and coming to terms with retirement or unemployment. The results showed that people who develop a dementia while still in employment do not always receive the ‘reasonable adjustments’ in the workplace to which they are entitled under the Equality Act (2010). Some of the participants felt that they were poorly treated by their workplace and described some distressing experiences. The study highlights the need for more effective specialized advice and support regarding employment issues and more research into the numbers of people in the UK that are affected by this issue.
Background: The prevalence of dementia is increasing among non-western immigrants. It is known that family care is provided relatively often among immigrant groups. Until now, however, relatively little was known about how relatives of people with dementia in the immigrant communities perceive family care. This study therefore focuses on describing the perspectives of female Turkish, Moroccan and Surinamese Creole family carers in the Netherlands about providing family care to a close relative with dementia.
Methods: Forty-one individual interviews and six focus group interviews (n=28) were held with female Turkish, Moroccan and Surinamese Creole family carers who are looking after a close relative with dementia. A qualitative analysis of the interviews has been carried out, supported by the software MaxQda.
Results: Related to their cultural and religious backgrounds, female family carers with Turkish, Moroccan or Surinamese Creole origins see family care as a task that they should carry out with respect and love. They feel that family care is superior to professional care and that it is principally a task for women. If men do have a role in family care, then it generally covers non-physical aspects. Despite the fact that the family carers interviewed listed aspects that make caring for a close relative with dementia difficult, they do say that they get a great deal of satisfaction from providing this care. In Turkish and Moroccan families in particular this type of care leads to more recognition and appreciation of the daughter or daughter-in-law who is giving it.
Conclusion: Family carers of Turkish, Moroccan or Surinamese Creole origin derive a great deal of satisfaction from giving family care to a relative with dementia. This fulfilment largely outweighs the burden of care. Professional support or information for these family carers can be improved by also focusing on the positive aspects of providing family care instead of an exclusive focus on reducing the burden.
It is essential to understand the experience of living with dementia from the perspective of the person with dementia so that services can be appropriately constructed. This review paper, drawing on prior work, identifies key strategies for the meaningful inclusion of persons with dementia within qualitative research studies, it examines the articulation of these strategies and shares how these strategies were operationalised within one national research study in Ireland. Strategies within the literature were categorised and then synthesized into a guide consisting of four main areas; gaining COnsent, maximizing Responses, Telling the story, and Ending on a high (CORTE). The CORTE guideline was used to as a tool for analysing relevant research reports. CORTE is a synthesized account of grouped strategies that could be used to maximize the meaningful involvement of persons with dementia and can also provide a guide for reporting the strategies used so that researchers can learn from each other.
Dementia-friendly communities, as communities that enable people with dementia to remain involved and active and have control over their lives for as long as possible, centrally involve social support and social networks for people living with dementia. The purpose of this research was to explore and understand the context of dementia in rural northern communities in Ontario with an emphasis on understanding how dementia friendly the communities were. Using qualitative methods, interviews were conducted with a total of 71 participants, including 37 health service providers, 15 care partners, 2 people living with dementia and 17 other community members such as local business owners, volunteers, local leaders, friends and neighbours. The strong social networks and informal social support that were available to people living with dementia, and the strong commitment by community members, families and health care providers to support people with dementia, were considered a significant asset to the community. A culture of care and looking out for each other contributed to the social support provided. In particular, the familiarity with others provided a supportive community environment. People with dementia were looked out for by community members, and continued to remain connected in their communities. The social support provided in these communities demonstrated that although fragile, this type of support offered somewhat of a safety net for individuals living with dementia. This work provides important insights into the landscape of dementia in rural northern Ontario communities, and the strong social supports that sustain people with dementia remaining in the communities.
Little is known about patients' decision-making to attend a nurse-led memory clinic (NLMC) or of their experiences in the months following attendance. This paper reports qualitative follow-up data from 13 participants who attended a NLMC run by a Nurse Practitioner, and who were interviewed later in their own homes. Participants attended the NLMC seeking ‘benchmarking’ against the broader population or confirmation of diagnosis, with the Nurse Practitioner perceived as having more time to talk. Although we anticipated that participants would have changed some behaviours to incorporate ‘brain health material’, we found that the focus was on maintaining current capacity and lifestyle with most participants delaying planning and decisions about future lifestyle changes until ‘necessary’. Understanding why people contact a NLMC and how their participation influences future planning can help us better target health care messages with the aim of improving health literacy.
An ageing population and an associated increase in the prevalence of dementia are of increasing concern in the United Kingdom and worldwide. Recently, the United Kingdom and other European countries implemented national dementia strategies to address this. This paper reports on the outcomes of a focus group study involving people with dementia and carers on their experiences of dementia care and support services in relation to government and third sector agencies’ objectives and recommendations. Three focus groups comprising carers and people with dementia (n = 27) were undertaken covering topics related to experiences, service receipt, information sharing and service development. Some participants experienced difficulties or delays in receiving a dementia diagnosis and in accessing appropriate care. The provision of training, timeliness of information, access to appropriate advice, and consistent and flexible services were deemed important. The findings suggest that some issues raised by participants were highlighted in earlier policy objectives and recommendations but remain of central concern. The projected growth in the number of people with dementia coupled with reduced availability of informal care and increased demand for services emphasises the need to transform dementia care in the United Kingdom.
This article presents and discusses findings from a qualitative study on how the dignity of patients with dementia is preserved or harmed when they live in a nursing home. The results build on participant observation in two nursing home wards, combined with qualitative interviews with seven relatives of patients with dementia. The most important issue for relatives was that their family member with dementia was confirmed as a relational human being. However, relatives experienced lack of resources and task-centred care as threats to confirming, relational care and to patients' dignity. Findings from participant observations confirmed this. In this article, we argue that care which focuses on the residents' personhood, combined with a relational focus, is of great importance in maintaining the dignity of people with dementia living in nursing homes.
Many people with dementia are cared for by their spouse or partner, therefore there is a need to understand the ways in which dementia and couple relationships impact upon each other. This study aimed to contribute to our understanding of the experience of dementia from a relational perspective. Seven couples, in which one person had a diagnosis of dementia, were interviewed about their experience of being in a couple where one partner had a diagnosis of dementia. Using interpretative phenomenological analysis, five master themes were identified, which illustrated how couples constructed their experience of dementia in order to make sense of it, and describe the processes that they adopt in order to adjust to dementia. Findings were supported by existing empirical and theoretical literature and suggest that services and interventions could be enhanced if a relational understanding of dementia were more fully considered.
Increased interest in, and demand for, music therapy provision for persons with dementia prompted this study’s exploration of music therapists’ strategies for creating musical communities in dementia care settings, considering the needs and resources of people affected by dementia. Focus group discussions and detailed iterative study of improvisational music therapy work by six experienced practitioners clarify the contextual immediacy and socio-musical complexities of music therapy in dementia care-homes. Music therapy’s ‘ripple effect’, with resonances from micro (person-to-person musicking), to meso (musicking beyond ‘session time’) and macro level (within the care-home and beyond), implies that all who are part of the dementia care ecology need opportunities for flourishing, shared participation, and for expanded self-identities; beyond ‘staff’, ‘residents’, or ‘being in distress’. On such basis, managers and funders might consider an extended brief for music therapists’ roles, to include generating and maintaining musical wellbeing throughout residential care settings.
The Department of Health has increased the emphasis on earlier detection of dementia among patients aged over 75 admitted to hospital in an emergency in England. Introduction of a Commissioning for Quality and Innovation (CQUIN) payment provides an incentive for NHS Trusts to screen patients for memory problems on admission. This article reports on how improvements were made to the screening process across three wards in a large university teaching hospital.
Although attention is paid to involving people with dementia as collaborators in research, the issue of place – where involvement actually occurs – has been neglected. This is significant because we know from the academic literature that places can adversely affect social relations and a person’s ability to participate as equal partners. This paper privileges place and documents our experiences of running residencies in the English Lake District with people with dementia – Houston, Gardiner and Wallace all have some form of dementia. In doing so we provide a model to reference for involving people with dementia in research and knowledge production, while simultaneously strengthening the evidence base for the residency as a method for participatory research. People with dementia participated in two residencies to co-produce a touring exhibition and educational resource as part of a research dissemination project. We found that by privileging place a more equitable, productive, healthier, and respectful way of involving people with dementia as collaborators in research dissemination could be realised. The project has wider implications for the involvement of people with dementia in not only research, but also public consultations, service evaluations, and policy-related work.
This article describes the social positioning of older people living with Alzheimer’s disease who scream in a long-term care home. Few studies have focused on the social positions taken by older people, their family and formal caregivers during interaction and their effects on screams. A secondary data analysis was conducted using Harré and Van Langenhove’s positioning theory. The results show that older people are capable of positioning and repositioning themselves in relational patterns. Family and formal caregivers position older people who scream according to their beliefs about their lived experience. They also react emotionally to older people and try to influence their behaviors. Understanding the social positioning of older people with Alzheimer’s disease brought out their capacities and their caregivers’ concerns for their well-being. Interventions should focus on these strengths and on promoting healthy relations in the triads to enhance quality of care in long-term care homes.
This longitudinal study examined perceived stigma in persons with dementia, with 50 persons with dementia, and 47 corresponding family caregivers. Data were collected at baseline and at 6, 12, and 18 months. Study results are reported in two parts, with findings regarding the stability of perceived stigma, measured using the modified Stigma Impact Scale, and relationship of stigma to person-centered variables being reported here. Findings included stability in perceived stigma, which did not show a downward trend until 18 months. Significant differences at baseline were found only for geographic location (rural vs. urban) with persons living in urban areas having higher levels of Stigma Impact Scale internalized shame compared to rural counterparts. Cognitive functioning was significantly, positively related to the Stigma Impact Scale social rejection and social isolation subscales. Findings support the enduring nature of perceived stigma over the early disease stages and the relationship of perceived stigma to some person-centered characteristics.
This paper presents the findings from an evaluation of a creative musical project led by Scottish Opera. The project included people with dementia and their carers in the development, writing, design and performance of a musical production about their experiences of love. The project involved professional singers, artists and choreographers from the opera company. Activities involved practice sessions and performances. People with dementia and their carers reflected on positive outcomes from the project including improved confidence; being part of a group; improved physical strength and people seeing them in a new way. Within the evaluation framework they also reported on how the project had been run and gave ideas for future development. Key elements in the success of this project were the involvement of professionals, the kudos of working with a national organisation and the performances that, while daunting, provided unique and rewarding experiences.
This article is the second report from a study examining perceived stigma in persons with dementia with findings regarding the association between stigma and quality of life outcomes being reported here. Fifty persons with dementia and 47 family caregivers were sampled, with data being collected at baseline and six, 12, and 18 months. The modified Stigma Impact Scale measured perceived stigma. Quality of life outcomes included: depression, anxiety, behavioral symptoms, personal control, physical health, self-esteem, social support, and activity participation. Linear mixed model or generalized linear mixed model (for depression) analyses revealed that some aspect of perceived stigma was associated with each outcome. Social rejection was associated with anxiety, behavioral symptoms, health, and activity participation. Internalized shame was associated with anxiety, personal control, health, self-esteem, social support understanding and assistance, and activity participation. Finally, social isolation was associated with depression, anxiety, personal control, health, self-esteem, social support understanding, and activity participation. The complexity of relationships between perceived stigma and quality of life outcomes is evident from these findings.
Despite the highly developed social services in Austria, the County of Upper Austria, one of the nine counties of Austria had only very limited specialized services for persons with dementia and their caregivers in 2001. Support groups existed in which the desire for more specialized services was voiced. In response to this situation, funding was received to develop a new structure for early disease detection and long term support for both the person with dementia and their caregivers. This article describes the development of the model of the Dementia Service Centres (DSCs) and the successes and difficulties encountered in the process of implementing the model in six different rural regions of Upper Austria. The DSC was described in the First Austrian Dementia Report as one of the potential service models for the future.
The outcomes for those with dementia admitted to acute hospitals are often poor, with higher mortality, increased risk of institutionalisation and longer length of stay. The aim of this study was to examine the impact of dementia on length of stay and the associated cost of care in acute hospitals in Ireland. People with a recorded diagnosis of dementia were found to have a significantly longer length of stay than those with no recorded dementia. Multiplying the excess length of stay by the number of dementia-related admissions gave an estimate of 246,908 additional hospital days per annum due to dementia at an associated additional annual cost of over 199 million. Improving the experience of those with dementia in acute hospitals will likely lead to cost savings for the health service; however, it will require a number of measures including: earlier diagnosis, training for medical professionals and improvements in the built environment.
Background and purpose: The mechanisms underlying the success of doll therapy are poorly understood. The aims of this study were to explore how people in care, doll users and non-users, make sense of doll use in their settings.
Methodology: A grounded theory approach was used, recruiting participants from three residential care homes involving four male and 12 female residents. Data collection occurred in two phases; five participants took part in a focus group and later 11 participants were interviewed individually. Eight of the 11 participants had dementia, and four participants were actively using dolls.
Results and conclusion: The results are presented as themes, and sub-themes, consisting of four main categories (intrapersonal features, interpersonal features, behavioural benefits, ethical and moderating factors). This thematic analysis shows that residents generally support the use of dolls, believing that dolls can have a positive impact on some users. The mechanisms by which this impact is achieved are discussed together with the ethical concerns.
Background: Use of technology to structure and support the daily activities of the residents in a small-scale group accommodation (SSGA) for dementia is a new innovation in the Netherlands. This paper presents the process of development of this new way of structuring activities and the findings of a pilot study looking at the experiences of using this device in people with dementia.
Method: A qualitative method was chosen, data were collected using individual interviews with the residents (n = 6), focus groups interviews with informal carers (n = 5) and members of staff (n = 6). Data were analysed using Ritchie & Spencer’s framework (1994).
Findings: Three main themes emerged: issues regarding the implementation, needs for further development and the learning experiences acquired during the development. The majority of the residents were happy with the use and function of the memory aid. However, the occurrence of installation errors, limited ease of use and a lack of knowledge regarding the function and use of the memory aid were issues that prevented a successful implementation. Findings highlighted shared views about ways of improving through adaptation of the software program and additional technological applications; internet connectivity, improving its accessibility by using a remote control and adding videos and photos.
Conclusion: Lessons are learned about the use and transferability of this innovation in people with dementia and other vulnerable target groups including those with learning disabilities as well as its limitation and the needs for further development.
The aim of this article is to investigate how spouses in couples with dementia position themselves in relation to each other by analysing their use of pronouns, especially the we. The study uses joint interviews with 11 couples. Based on a quantitative analysis of pronoun use, it is argued that the pronoun we is used by all the spouses; however, it is used less frequently by the spouses with dementia in comparison with healthy spouses. A qualitative analysis of the use of the pronoun we shows that the spouses position, experience and consider themselves as a couple and that they position and experience themselves as individuals in relation to the couple. One of the challenges for couples with dementia is to be able to retain a we in face of the progression of the dementia disease. By positioning themselves in various ways, the spouses establish and negotiate quite a complex and emotionally charged web of relationships.
Alzheimer’s disease irrevocably challenges a person’s capacity to communicate with others. Earlier research on these challenges focused on the language disorders associated with the condition and situated language deficit solely in the limitations of a person’s cognitive and semantic impairments. This research falls short of gaining insight into the actual interactional experiences of a person with Alzheimer’s and their family. Drawing on a UK data set of 70 telephone calls recorded over a two-and-a-half year period (2006–2008) between one elderly woman with Alzheimer’s disease, and her daughter and son-in-law, this paper explores the role which communication (and its degeneration) plays in family relationships. Investigating these interactions, using a conversation analytic approach, reveals that there are clearly communicative difficulties, but closer inspection suggests that they arise due to the contingencies that are generated by the other’s contributions in the interaction. That being so, this paper marks a departure from the traditional focus on language level analysis and the assumption that deficits are intrinsic to the individual with Alzheimer’s, and instead focuses on the collaborative communicative challenges that arise in the interaction itself and which have a profound impact on people’s lives and relationships.
Alzheimer’s caregiving literature acknowledges dressing as a major daily stressor but research on this topic is negligible. A qualitative grounded theory approach was used to explore Alzheimer’s family caregivers’ perspectives about issues that arise when their family members lose the ability to dress independently. Three focus groups and seven individual interviews were conducted and audio recorded with 25 information rich caregivers. Constant comparative analyses and coding of the transcripts identified six major themes leading to a ‘Preservation of Self Model: Care Recipient to Care Giver’ that portrays the caregiving trajectory. Initially, caregivers tried to protect the self dignity of the family member by maintaining usual routines and absorbing blame for difficulties. Dressing ‘battles’ occurred and caregivers learned management through trial and error. Crossing adult–child-gender role boundaries escalated discomfort. When facing unrelenting demands, concern shifted to preservation of the caregivers’ health and self. Results suggest that caregivers would benefit from more pro-active dressing counseling to shorten the trial and error periods, dressing aids more relevant to dementia and more knowledgeable helpers. The preservation model can facilitate understanding of the caregiving trajectory and guide intervention support.
Aggressive behavior between residents with dementia in long-term care residences is a concerning but understudied phenomenon. The goal of the study was to identify the circumstances, sequence of events, and triggers that lead to these behaviors. I collected the data during 10 months in two special care units of an assisted living residence. I used participant observation as the primary data collection strategy, complemented by review of clinical records and semi-structured interviews with care staff and managers. As the analytic framework, I used Grounded Theory informed by Miles and Huberman’s approach. In a substantial number of the reported 85 incidents, I identified observable early warning signs; in the majority, I identified observable causes or triggers prior to the aggressive acts. The majority of incidents were situational-reactive (circumstance-driven) and therefore potentially modifiable. Twelve effective staff prevention strategies were identified. I suggest incorporating the study findings into care staff training programs.
We compared data regarding diagnosis, treatment and follow-up of patients with dementia in the central and the peripheral areas of Israel. Data were collected from the medical records of 164 patients with advanced dementia, all residents of dementia special care units – 97 patients from a central nursing home and 67 patients from the peripheral areas. The data collected related to the period prior to hospitalization and included: demographic data, imaging tests, follow-up by a memory clinic and drug treatment prior to admission. Mini Mental State Examination on admission was also recorded. Patients in the peripheral areas were hospitalized while having better cognitive function, as demonstrated by the Mini Mental State Examination (p < 0.05). More patients in the central areas versus the peripheral areas were aided by an in-house worker prior to admission (p < 0.001). More patients with dementia in the central areas were followed up by a memory clinic (p < 0.001) and underwent brain imaging (p < 0.01) compared with patients with dementia living in the peripheral areas. Although not significant, patients from the central areas were more commonly treated with atypical neuroleptics for behavioral problems (p = 0.05). On the basis of the current data, we suggest that there are differences in the diagnosis, follow-up and drug treatment among patients with dementia living in the central areas versus those living in the peripheral ones. Patients in the peripheral areas are hospitalized while their cognitive abilities are relatively better than those of the patients in central areas.
This paper focuses on the benefits and limitations of collaborative research in community-based service settings explored through the implementation of a psychosocial intervention. The study aimed to establish the effectiveness of working with dementia dyads (person with dementia and family caregiver) in the early stages of dementia and to recruit and train an existing practitioner workforce to deliver a psychosocial intervention designed to assist dementia dyads to manage the consequences of dementia. Seven intervention staff participated in post-intervention semi-structured interviews. Whilst staff recruitment and retention proved challenging the degree to which staff demonstrated the required communication skills and competence was an important component in dyad acceptability of the intervention. Participatory factors, collaborative development, selective recruitment, focused training and ongoing specialist support, can assist the implementation of practice-based research. However, intervention staff participation and therefore intervention delivery can be hampered by workplace culture and workforce demands.
Background: Early diagnosis of dementia within primary care is important to allow access to support. However, dementia remains under-detected in general practice.
Aim: This work aimed to develop and evaluate an educational intervention for primary care promoting person-centred responses to people experiencing cognitive decline.
Method: A prototype educational intervention was pilot tested and refined; the final version of the educational intervention was then evaluated in four volunteer practices. A questionnaire was administered pre- and post-training to 94 practice staff to assess knowledge and attitudes to dementia. The responses of general practitioners (who make diagnostic, referral and treatment decisions) were compared with those from other staff who do not have such roles.
Findings: Post-training, there were statistically significant improvements in understanding of person-centred care for people with dementia; attitudes to early diagnosis; awareness of non-cognitive dementia symptoms; and awareness of the role that non-clinical staff may have in recognising dementia.
Conclusions: A dementia education intervention for primary care which fosters person-centred attitudes can involve all members of a primary care team. Further research is needed to ascertain if improvements in knowledge and attitudes translate into improved practice.
Delay in diagnosis and difficulties in accessing appropriate health care services plague dementia care delivery in the community setting, potentiating the risk for misdiagnosis, inappropriate management, poor psychological adjustment and reduced coping capacity and ability to forward plan. We evaluated a clinical nurse consultant role with a speciality in dementia to provide person-centred pre-diagnosis support in the community. Clients, with a six-month history of cognitive and functional decline in the absence of delirium but no formal diagnosis of dementia, were recruited from a Home Care Nursing Service and an Aged Care Assessment Service located in the Western Suburbs of Melbourne, Victoria, Australia. The role of a clinical nurse consultant was highly regarded by clients and other health professionals. This paper discussing the CNC role and the outcomes of the role suggests it was successful in providing timely assistance and support for consumers and support for other health professionals.
Although generativity is used as a central cultural construct within life course theory to illustrate how older persons create interpersonal ties, it is also tied to key concepts in social exchange theory since generative acts can provide a way for achieving more equity in intergenerational power relationships. Without opportunities for older adults to invest themselves in younger generations, they may no longer feel needed within their family or community. In this article, we discuss the relationship of generativity and dementia through the generative activities of older persons with cognitive decline. Field notes from 8 months of research in a dementia-care setting as well as interviews with 20 residents were thematically analyzed to identify: (a) generative acts among people with dementia; (b) residents’ expressions regarding giving to others; and (c) barriers to generativity. Examining generativity among people with dementia requires that one considers the subjective experience of the condition and understands that many social behaviors remain intact irrespective of any quantified cognitive loss (captured here through the use of case examples).
Self-management programs are effective for people living with chronic illnesses. However, there has been little research addressing self-management for people with dementia in the early stages. This study presents a qualitative evaluation of the experiences of attending a novel self-management program and initial process evaluation. The program was designed with and for people with dementia. It addresses: (a) relationship with family, (b) maintenance of an active lifestyle, (c) psychological well-being, (d) techniques to cope with memory changes and (e) information about dementia. Six participants with early stage dementia completed the intervention that was co-delivered by lay and clinical professional tutors. Participants and tutors attended focus group and interviews at the end of the program to explore their perceptions of the intervention. These were audio-recorded, transcribed verbatim and analysed thematically. Participants reported enjoyment and benefits from the intervention. This was despite some reporting concerns relating to their memory difficulties. The program's flexible nature, focus on strengths and the opportunity to spend time with other people living with dementia were particularly well received. Participants and tutors outlined areas for further improvement. The program was feasible and its flexible delivery appeared to facilitate participant benefit. Emphasis should be placed on maintaining activity and relationships, improving positive well-being and social interaction during the program. Memory of the pleasant experience and strengths focus was evidenced, which may impact positively on quality of life. The results highlight the usefulness and acceptability of self-management for people with early stage dementia and provide initial support for the program's structure and content.
The Gnosall Primary Care Memory Clinic has been operating since 2006 and adds the skills of a specialist old age psychiatrist to the extensive skills and knowledge available in primary care. Key to the organisation and function of the clinic is the eldercare facilitator, a new role situated in primary care and linking with the specialist and a wide range of other agencies and people. In order to facilitate replication of the model elsewhere, the function, role and competencies of existing and previous eldercare facilitators in the clinic have been reviewed, clarified and related to a competency framework and to similar initiatives in the literature. The selection and training of people with the attributes and skills required to become an eldercare facilitator will determine whether extension of the model is successful elsewhere.
Research on the experience of receiving and living with a diagnosis of dementia is sparse. Existing studies have focused on the initial reactions to the diagnosis rather than longer term adjustment and coping. The current study uses interpretative phenomenological analysis to explore personal experiences of receiving a diagnosis and to investigate aspects of the experience of adjusting and adapting to dementia. This is a cross-sectional study drawing on semi-structured interviews with 10 participants who had a diagnosis of mild Alzheimer’s disease. The findings illustrated the importance, to people with Alzheimer’s disease, of understanding and making sense of the diagnosis to help them deal with issues of loss and to make positive adjustments to their lives through employing specific coping strategies. The findings also appeared to challenge misconceptions held by some professionals in relation to possible negative effects of disclosing a diagnosis of dementia.
Introduction: Life story work is increasingly being used with people with dementia; this work offers a critical appraisal of some challenges that may be faced in practice.
Design and methods: An in-depth case study analysis was undertaken to understand the experiences of people with dementia, family carers and care staff in using life story work in an NHS Mental Health and Social Care Trust. Data collection included semi-structured interviews, observation, conversations and field notes.
Findings: Private memories were sometimes recalled by the person with dementia that were not for inclusion in any written product; enabling the person with dementia to tell their own life story could be a challenge; quality of the life story books was variable and; at times, life story work may be overused with the person with dementia.
Conclusion: Services should not be deterred from undertaking life story work with people with dementia, but there is a need to adopt a planned approach to its implementation that includes facilitation, education and supervision.
This article describes the impact of music therapy upon a group of nine people with advanced dementia in a hospital setting. It demonstrates how the impact of music therapy was measured using the case notes completed by nursing and care staff and how these notes suggested that music therapy had a positive effect on the mood and behaviour on eight of the nine people receiving music therapy.
This article describes how the multi-step mid-course assessment of the REACH II community translation project in North Carolina was guided by the RE-AIM framework, and summarizes adaptations made to enhance the feasibility of adoption and maintenance while at the same time assuring fidelity to program core elements. The two-stage assessment involved both quantitative (survey) and qualitative (discussion group) components. Results indicated a need to focus primarily on tailoring pre-intervention training, streamlining and clarifying intervention guides and tools, targeting specific participant recruitment messages, addressing issues of session length, and clarifying what flexibilities family consultants could exercise in terms of specific session content addressed and other supportive materials used. The use of the RE-AIM framework and the mixed-method process allowed the program staff to thoroughly assess program satisfaction and areas of concern, and ultimately ensured that the family consultants implementing the intervention had a voice in the adaptation process.
This paper investigates how meaning, motivation and relationship dynamics influence the caregivers’ subjective experience of caregiving. We interviewed 12 family caregivers of relatives with dementia. We analysed transcripts of these interviews using interpretative phenomenological analysis. Six key themes emerged from the analysis, which were encompassed under an overarching theme of ‘balancing needs’. This describes the caregivers’ constant struggle to balance their own needs against those of their relative, which created a series of dilemmas. These dilemmas emerged from the desire to try to preserve the caregivers’ relationship with their relative, while recognising that this relationship was changing. The caregivers’ relationship with their relative influenced the caregivers’ motivations to provide care and gave caregiving meaning. Although caregivers were motivated to provide care the battle to balance needs meant that the caregivers recognised there might come a time when they may need to cease caregiving.
Professionals working with people with dementia need to develop new activities that occupy patients and increase positive emotions. Dementia care mapping is a reliable method of measuring well-being during activities with people with dementia. The iPad has many applications that may be suitable as a group activity for persons with dementia. Six people with dementia took part in two traditional and two iPad activities over two days. Well-being was recorded using dementia care mapping. Subjects displayed similar or better levels of well-being during iPad activities than traditional activities. A larger variation of behaviors was seen during iPad activities than traditional activities. With detailed planning using a person-centred care approach, iPad group activity has the potential to be as effective and engaging as other conventional activities in achieving well-being.
Background: In Japan, the number of older people with dementia was 2.26 million as of 2010, and Alzheimer’s disease accounted for the greatest morbidity rate among older people with dementia.
Objective: The purposes of this longitudinal study were to assess whether the Daily Cognition and Behavior for Alzheimer’s Disease scale might help observe changes in daily cognition and behavior among Alzheimer’s disease patients and to determine whether the scale could be used by non-professional caregivers.
Methods: Data obtained from 111 rater-patient pairs were analysed. The scores for Daily Cognition and Behavior for Alzheimer’s Disease used by staff members were compared with those for two other scales designed for professional use. Comparisons were made using one-way repeated-measures ANOVA.
Results: The scores for Daily Cognition and Behavior for Alzheimer’s Disease indicated a declining pattern similar to those for the other scales. There was no significant difference in scores by rater occupations.
Conclusion: Findings suggest Daily Cognition and Behavior for Alzheimer’s Disease might help observe changes in daily cognition and behavior among Alzheimer’s disease patients, and that Daily Cognition and Behavior for Alzheimer’s Disease can be used by non-professional caregivers.
Background: Studies indicate that social integration has a significant influence on physical and mental health. Older adults experience an increased risk of social isolation as their social networks decline with fewer traditional opportunities to add new social relationships. Deaths of similar aged friends, cognitive and functional impairments, and relocating to a nursing home (NH) or assisted-living (AL) facility contribute to difficulties in maintaining one’s social network. Due to the paucity of research examining the social networks of people residing in AL and NH, this study was designed to develop and test the feasibility of using a combination of methodological approaches to capture social network data among older adults living in AL and a dementia special care unit NH.
Methods: Social network analysis of both egocentric and sociocentric networks was conducted to visualize the social networks of 15 residents of an AL neighborhood and 12 residents of a dementia special care unit NH and to calculate measures network size, centrality, and reciprocity.
Results: The combined egocentric and sociocentric method was feasible and provided a robust indicator of resident social networks highlighting individuals who were socially integrated as well as isolated.
The number of persons with dementia who lives at home for a longer period of time after diagnosis is increasing. Even if the literature in the dementia field is growing, there is a need for more knowledge about everyday life of persons with a dementia disease; particularly the lived perspective of persons who live alone. The aim of this study was to elucidate the phenomenon of living alone with dementia and having a manifest care need. This phenomenological study was carried out from a reflective lifeworld approach. The data material in the study consisted of field notes from 32 visits and transcriptions from 11 tape-recorded conversations with six participants. The results reveal that the person with dementia who lives alone ends up in a vague existence where they cannot survive alone. The person’s level of activity comes to a halt and body movement becomes slower. Daily life becomes more difficult to manage and the person’s earlier natural way of relating to the world and the people around them is gradually lost. This is followed by a loneliness and forgetfulness that cloud the meaning of life. This study highlights the importance of the patient’s perspective needed to better understand the inner life of a person who suffers from dementia. This understanding is important in the organization of help and care as well as for caregivers to better understand these individuals and their needs.
This article provides a meta-synthesis of studies focusing on grief in caregivers of people with Alzheimer’s disease or related dementia. Through a systematic search, 11 articles met the inclusion criteria that care receivers had a diagnosis of Alzheimer’s disease or related dementia, caregivers were informal caregivers, and the study focused on caregiver grief. The meta-synthesis followed a meta-ethnography approach based on reciprocal translation. Six themes were identified, namely challenges of caregiving, losses and changes in the relationship, the role of dementia in grief, striving despite dementia, utilising social support and death as a relief from caregiving. Themes are discussed within an integrated framework showing the connected relationships between themes. The devised framework of themes illustrates the general experience of caregiver grief and can be used to devise specific, targeted interventions to help caregivers to identify and work through their grief.
The greying of the population and trends that will change the future institutional context have implications for the social care for people with dementia and their caregivers. Based on the data of services provided by 50 organisations in a region in the South of the Netherlands, an organisational analysis revealed that better coordinated care is needed to fit the changing needs of clients in different phases of the disease process.
Background: Living arrangements play an important role in determining the quality of life (QoL) of people with dementia. Although informal care (home-based) is favored, the transition to formal (institutional) care often becomes necessary, especially in the later stages of dementia. Nevertheless, there is currently no definitive evidence showing that informal or formal care provides a higher QoL for those with dementia.
Objective: To compare the QoL of people with dementia in the nursing home and home care, and identify factors that differentiate their QoL.
Design and methods: This was a cross-sectional survey. A total of 49 people with dementia ≥60 years old were recruited from government nursing homes and hospitals (home care). Consenting participants were assessed on cognitive severity, QoL, activities of daily living (ADLs), depression, and social isolation/connectedness by the Short Mini Mental State Examination (SMMSE), the WHO-8 (the EUROHIS-QOL), Short Assessment of Quality of Life (AQoL-8), Barthel Index (BI), Cornell Scale for Depression (CSDD), and Friendship Scale (FS).
Results: There were significant differences in QoL, HRQoLs, ADLs, and social connectedness among people with dementia in home care (n = 19) and those in nursing homes (n = 30) (p < 0.01). No significant differences were found by socio-demographic factors, cognitive severity, or depression between the study cohorts.
Conclusions: Older adults with dementia who were living at home experienced higher QoL, ADLs, and social connectedness compared with those living in institutional care. Support should be provided enabling home care and empowering caregivers to provide better care for people with dementia.
It is estimated that 820,000 people in the UK have dementia. Dementia costs the UK 17 billion a year and in the next 30 years this will treble to over £50 billion a year. There is a need to raise competence of staff delivering care to people living with dementia across health, social and voluntary sector provision. Effective education and training will build capacity and improve staff knowledge. However, at present not enough is known about the experiences of staff involved in gaining the skills, knowledge and attitudes required to support provision of high quality care for people with dementia.
This study was conducted within a large National Health Service Trust in the UK serving an urban, ethnically mixed population, in collaboration with a local university. The trust responded to government policy by seeking to identify staff training needs.
The aim was to explore the experiences of staff working within a specialist mental health service in relation to development of skills for the provision of person-centred care for people with dementia. To achieve this, staff roles, experiences of dementia training and the ways in which staff feel they learn were explored through focus group interviews. Relatives’ views of staff competencies necessary for effective care provision were also explored to supplement the data from staff. A total of 70 staff and 16 family carers participated and data were subjected to inductive thematic analysis.
Five themes emerged: competency-based skills, beliefs, enablers and barriers and ways of learning. Findings suggested participants felt that skills for person-centred care were innate and could not be taught, while effective ways of learning were identified as learning by doing, learning from each other and learning from experience.
Dementia is a challenging, progressive set of conditions which present a large care burden to informal, familial carers. A complex array of health and social care services are needed to support people living with dementia. Drawing on the interlinked ‘Duties to Care’ and ‘Dementia Talking’ projects, in this article we focus on British carers’ talk about health and social care services. We explore data from a mixed-method questionnaire (n = 185), four focus groups and eleven interviews with informal carers of people living with dementia using thematic discourse analysis. Three themes are discussed: (1) services as a ‘maze’; (2) services as overly limited – ‘beyond our remit’; and (3) the battle and fighting discourse deployed by these carers. Our analysis highlights that carers find navigating systemic issues in dementia care time-consuming, unpredictable and often more difficult than the caring work they undertake.
The number of elderly people in Japan is growing, which raises the issue of dementia, as the probability of becoming cognitively impaired increases with age. There is an increasing need for caregivers, who are well-trained, experienced and can pay special attention to the needs of people with dementia. Technology can play an important role in helping such people and their caregivers. A lack of mutual understanding between caregivers and researchers regarding the appropriate uses of assistive technologies is another problem. A vision of person-centred care based on the use of information and communication technology to maintain residents’ autonomy and continuity in their lives is presented. Based on this vision, a roadmap and a list of challenges to realizing assistive technologies have been developed. The roadmap facilitates mutual understanding between caregivers and researchers, resulting in appropriate technologies to enhance the quality of life of people with dementia.
We studied caregivers’ willingness-to-pay for Alzheimer’s disease drug therapy. We recruited 216 caregivers of persons with mild or moderate Alzheimer’s disease and presented them with four scenarios describing a hypothetical Alzheimer’s disease medication. The scenarios described the medication as capable of either treating the symptoms of disease or modifying the course of disease. The scenarios also presented two different probabilities of adverse effects occurrence, i.e. 0% or 30%. Most caregivers said they would pay out-of-pocket for the medication, with support for such payment ranging from 68% to 93%, depending on the specific scenario. The highest level of support was for the ‘disease modifying and no adverse effects’ scenario, while the lowest level was for the ‘symptom treatment and 30% chance of adverse effects’ scenario. On average, caregivers’ monthly willingness-to-pay out-of-pocket for the medication ranged from $214 to $277 (Canadian dollars). Dollar amounts were highest for the ‘disease modifying and no adverse effects’ scenario and lowest for the ‘symptom treatment and 30% chance of adverse effects’ scenario. Support for out-of-pocket payment and specific dollar amounts were highest when the medication did not involve adverse effects. Caregivers placed more value on the absence of adverse effects than on drug efficacy.
This qualitative study explored the medication management experiences of Australian ethnic minority family caregivers of people living with dementia. From the perspective of this group of caregivers, medication management was a source of stress resulting from the progressive loss of ability of care recipients to manage their own medications; the complexity of the medication regime and the caregiver’s lack of trust of the care recipient to safely and effectively manage medications. Caregivers used various strategies to manage medications and avoid conflict with care recipients including being watchful and involving other family members in medication management tasks. Family caregivers indicated that a lack of information and access to support to inform their medication management role added to their stress, which was exacerbated in some cases by limited English proficiency. Supportive factors noted by caregivers included a well-established relationship with a community pharmacist, involvement of a geriatrician, family support and caregiver support group participation.
This study is underpinned by social constructionist epistemology, which points to the socially constructed character of our worlds, in that we co-create and are co-created by (including experience and identity) our social realities. Through narrative analysis of some poems from the words of people given a diagnosis of dementia, this study engaged in the process of meaning-making in relation to Self-construct and the wider social world. Some narratives evidenced speakers’ lack of agency over their experiences, not because of the ‘dementia’ but due to treatment and care contexts. Some narratives provided instances in which others positioned speakers into identity constructions contradictory to their life-long Self-constructs. Other narratives demonstrated that, through acknowledging and supporting ‘personhood’, speakers retained a sense of well-being and purpose in their social worlds. It is hoped that focusing on the words of individuals given dementia diagnoses, away from predominant bio-medical discourses, may facilitate professionals’ continuous reflection and person-centred practice.
The Alzheimer’s Association’s Memories in the Making® (MIM) art activity program is intended to enhance the well-being of individuals who are living with dementia. Previous evaluations of MIM have found that participants show benefits on several well-being domains measured by the Greater Cincinnati Chapter Well-Being Observation Tool©. The current study extended those findings by looking for evidence of carry-over effects beyond the temporal boundaries of MIM sessions. Additionally, this study evaluated key psychometric qualities of the assessment instrument. Seventy-six MIM participants with middle- to late-stage dementia were evaluated by interns and care facility staff at the beginning, middle and end of a 12-week MIM program. Interns focused on behavior within MIM sessions and staff rated functioning outside MIM sessions. Staff reported no significant changes in resident well-being across the 12-week program. Interns reported significant improvements from the beginning to middle and end of the program on five well-being domains. Psychometric analyses of the Greater Cincinnati Chapter Well-Being Observation Tool© identified weaknesses in inter-rater reliability and found that the instrument measures two orthogonal factors – interpreted as ‘Well-Being’ and ‘Ill-Being’ – not the seven domains claimed. Quantitative evidence for the effectiveness of MIM is ambiguous, but anecdotal observations indicate that the program is beneficial for some participants, if only fleetingly.
Social isolation is a key concern for individuals with dementia in long-term care. A possible solution is to promote social interaction between residents. A first step toward facilitating positive relationships between residents with dementia is to understand the mechanisms behind their interactions with each other, and also how their relationships with each other are built through such interactions. Drawing on casual conversations between residents in a special care unit for dementia, this paper uses systemic functional linguistics to examine how people with dementia use language to enact and construct their role-relations with each other. Results suggest people with dementia are able and willing conversationalists. However, factors such as the extent of communication breakdown and compatibility of the interlocutors may influence whether positive relations develop or not. Casual conversation is suggested to be a promising activity to encourage positive interpersonal processes between individuals with dementia in residential care.
This study evaluated adapted gardening as an activity for people with advanced Huntington's disease (HD) and explored its therapeutic aspects. Visitors and staff completed a questionnaire and participated in structured interviews to capture further information, whereas a pictorial questionnaire was designed for residents with communication difficulties. Staff reported that gardening was a constructive, outdoor activity that promoted social interaction, physical activity including functional movement and posed cognitive challenges. Half the staff thought the activity was problem free and a third used the garden for therapy. Visitors used the garden to meet with residents socially. Despite their disabilities, HD clients enjoyed growing flourishing flowers and vegetables, labelling plants, being outside in the sun and the quiet of the garden. The garden is valued by all three groups. The study demonstrates the adapted method of gardening is a stimulating and enjoyable activity for people with advanced HD.
Admission to hospital has been found to have a negative impact on people with dementia. The Scottish Dementia Champions programme was developed to prepare health and social service Dementia Champions working in acute settings as Change Agents. The programme was initially delivered to a cohort of 100 health professionals via blended learning, and comprised five study days, a half day spent in a local community setting, and e-learning. In order to complete the programme and graduate, participants were required to complete and submit reports relating to three work-based activities.
The evaluation of the project adopted a two-pronged approach:
(1) Impact on programme participants was assessed by scores derived from the Approaches to Dementia Questionnaire (ADQ) (Lintern, 1996 completed at Study Days 1 and 5, and analysis of qualitative data derived from the three written assignments.
(2) Participants were asked to evaluate course materials and input for each of the five study days, as well as satisfaction with delivery.
Analysis of data derived from the ADQ and 100 reflective reports of the community experience indicate that participants’ perceptions of people with dementia shifted significantly during the Programme. Participants identified a range of issues which should be addressed with a view to improving the experiences of people with dementia in acute settings, and put in place actions to bring about change. The format of the programme provided a cost effective means to prepare NHS and Social Service Dementia Champions as Change Agents for practice within a relatively short period of time, and would be transferrable to other staff groups as well as different organisational structures in other countries.
Attachment bonds are important for personality development, emotion regulation and mental health throughout the lifespan. This systematic review explores the relevance of attachment for people with dementia, and how attachment influences the experience of caregivers of people with dementia. Eighteen studies were included. Three focused on attachment in terms of parent fixation in dementia, three examined attachment behaviour in dementia, five addressed attachment and dementia-related behavioural problems, and seven concentrated on attachment in caregivers. Attachment behaviours were evident at various stages of dementia and the presence of parent fixation was observed when attachment needs were not being met. Insecure attachment was related to neuropsychiatric symptoms. Attachment security had important consequences for caregiver psychological health. Implications of methodological issues such as the choice of respondent, measurement issues, and the lack of a longitudinal perspective are discussed. The implications of attachment for the support of people with dementia and caregivers are considered.
This article gives an outline of how the socio-linguistic approach of conversation analysis can be applied to the analysis of carer–patient interaction in care homes. A single case study from a routine encounter in a residential care home is presented. This is used to show how the conversation analysis method works, the kinds of interactional and communication features it can expose, and what specific contribution this kind of micro-interactional approach may make to improving quality of care in these environments.
Currently there are 820,000 people with dementia in the UK, a figure projected to reach 1.7 million by 2050. Policy and practice emphasis on early intervention in dementia and support of family carers foreground a need to explore service efficacy for relatives of those with a recent diagnosis. Existing evidence suggests that psycho-educational interventions can significantly enhance carer well being especially when well targeted and group based. A rolling programme of seven psycho-educational Courses for ‘new carers’ in one area of England was the subject of a systematic evaluation incorporating a quantitative rating scale and qualitative data. Findings suggest that the Courses achieved a number of intersecting aims: they provided psychological support; offered advice; enhanced coping skills; boosted confidence; increased knowledge; and prepared the carer for the future. That the Courses were designed and delivered by specialist staff – primarily psychologists, offered a social dimension, were time limited and free are noteworthy features. The evaluation suggests that as a model the Course has considerable short and longer term preventive potential; also that it could be replicated elsewhere in the country and achieve similar outcomes.
Purpose: This study aims to identify caregiving stressors and coping strategies in a sample of family caregivers of persons with dementia living in Shanghai, China.
Methods: A sample of 18 family caregivers participated in semi-structured face-to-face interviews. Information regarding caregiver appraisal of caregiving situations, difficulties with care provision, and ways of dealing with stressors were obtained. Thematic analysis was used to assess the interview data.
Results: In addition to stressors directly related to caregiving demands (i.e., burden due to care recipient limitations in physical, cognitive, or behavioral functions), other salient stressors that emerged were role strains, family conflicts, and pressure from the social environment. Yet, caregivers demonstrated resilience by drawing on their coping resources from a variety of sources, including personal experience, family, technology and information, religion, and governmental support.
Implications: Specific attention needs to be given to help family caregivers alleviate stress due to family conflicts and pressure from the social environment. Policy formulation and program design needs to build on caregiver strengths to support and empower Chinese families caring for relatives with dementia patients.
This study explored the experiences of sons caring for a parent with dementia. Individual, semi-structured interviews were conducted with a purposeful sample of sons (n = 13) in a rural part of Ireland. Interviews were audiotaped, transcribed verbatim and analysed for common themes. The key themes that emerged were ‘the parental bond’, ‘a binding role’, ‘coordinating care and support’ and a ‘getting on with it’ approach to care. The study highlighted the commitment of sons to their caregiving role and the strong sense of duty that motivated them to provide care. The findings suggested that while many aspects of the caregiving experience such as lack of information and support are gender neutral, there are differences in the caregiving experiences of men and women in how they view their relationship with their parent and in the management of their caregiving role that merit further investigation.
Background: The cognitive, emotional, and psychological consequences of dementia are profound and can include memory loss, processing and, communication difficulties, social isolation and agitation. Procedural memory remains fairly intact in people with dementia (PWD) and is readily triggered via sensory cues and prompts. As religious services are often highly structured, it is likely that PWD can participate competently, potentially enhancing their quality of life, and wellbeing.
Aims: This study aimed to investigate Christian worship leaders’ attitudes and observations of PWD attending religious services, to identify recurring themes, and to generate hypotheses regarding the effects of participation in religious services on PWD.
Method: The participants were Christian worship leaders experienced in conducting religious services for PWD. The study adopted a grounded theory approach consisting of two phases: a focus group of four worship leaders at Phase 1 and a series of one-to-one interviews with eight worship leaders at Phase 2.
Results: Five linked themes emerged: familiarity and structure; enhanced sensory cues; significance of worship leader’s approach; social support from and for family and carers; and the personality and characteristics of the PWD. These themes were used to develop a conceptual model, sharing the moderating and mediating factors of wellbeing.
Conclusion: Religious worship appeared to constitute a naturalistic psychosocial intervention comprised of the service itself and the social context. Further investigation and conceptualisation of the interaction between PWD and their social environment is warranted, and collaboration with those people who constitute the PWD’s social support network.
People with mild cognitive impairment and Alzheimer’s disease are likely to be challenged by the multitude of everyday technology in today’s society. The aim of this study was to explore how they try to prohibit, avoid or solve problems in everyday technology use, maintain skills, and learn to use new technology. To explore how the participants applied and reasoned about using everyday technology in real-life situations interviews were conducted while the participants used their own technology in their homes. Interviews were conducted with 20 participants with mild cognitive impairment (n = 10) or Alzheimer’s disease (n = 10). The analyses were inspired from grounded theory and resulted in one core category and three sub-categories that represent sub-processes in the core. The core finding presents a continuous, intertwined process of learning and using everyday technology, highlighting how the context was interwoven in the processes. The participants used a rich variety of management strategies when approaching technology, including communication with the everyday technologies on different levels. The findings underscore that it is important to support continued use of everyday technology as long as it is valued and relevant to the person with mild cognitive impairment or Alzheimer’s disease. The intertwined process of learning and using everyday technology suggests how support could target different sub-processes.
There is minimal research investigating non-speech communication as a result of living with severe dementia. This phenomenological study explores retained awareness expressed through non-speech patterns of communication in a family member living with severe dementia. Further, it describes reciprocal efforts used by all family members to engage in alternative patterns of communication. Family interactions were filmed to observe speech and non-speech relational communication. Participants were four family groups each with a family member living with non-speech communication as a result of severe dementia. Overall there were 16 participants. Data were analysed using thematic analysis. One superordinate theme, Dance of Communication, describes the interactive patterns that were observed during family communication. Two subordinate themes emerged: (a) in-step; characterised by communication that indicated harmony, spontaneity and reciprocity, and; (b) out-of-step; characterised by communication that indicated disharmony, syncopation, and vulnerability. This study highlights that retained awareness can exist at levels previously unrecognised in those living with limited or absent speech as a result of severe dementia. A recommendation for the development of a communication program for caregivers of individuals living with dementia is presented.
This paper outlines an intervention protocol used to educate carers in a project that implemented and evaluated a capability model of dementia care (CMDC) in three long-term aged care facilities. It outlines an evaluation of the content of the education and processes used to deliver the intervention through an analysis of surveys and reflective field notes. The education protocol was designed for adult learners and grounded in the six assumptions of Knowles' learning theory. Results suggest the education protocol positively impacted on the knowledge, skills and attitudes of participants towards providing quality dementia care to residents in long-term care. The paper also acknowledges the challenges involved in sustaining a practice change through an educational intervention.
We employed an auto-ethnography approach to explore the affective dimension of life review sessions with community-dwelling older military veterans with minor cognitive impairment (MCI) and early dementia. Using researchers’ analytic memos, we identified facilitators’ interactional strategies that fostered the participant’s sense of personal identity, dignity and social self-worth. Interaction among participant, caregiver, and facilitators evoked a range of emotional responses, offering a window into the affective world of MCI and early dementia. Positive emotional responses outnumbered negative emotional responses by a ratio of two-to-one in the life review sessions; however, negative emotions were more revelatory of current struggles with declines in health and function. Facilitators utilized two interactional strategies, in particular, to foster personhood and social value of participants: focusing on the participant and creating an empathic connection with the participant. Further work is needed to understand the role of emotions in research interactions and to examine the psychosocial mechanisms through which positive affect functions in promoting identity, personhood and social value among persons with MCI and early dementia.
This paper presents a case study exploring an older woman’s perspective on the quality of her life with dementia. The case study establishes the importance of coherence across the life course in understanding how she evaluates her changed situation in the present compared to the past. The metaphoric description of moving from ‘up there’ to ‘down here’ represents the perceived struggle to maintain a sense of worth despite a marginalised social position. Being able to define self and social identity in ways that preserve a sense of social status is important to find meaning in everyday life. Finding meaning involves looking backwards to sustain continuity with the past and looking forwards to maintain momentum and keep going. A narrative framework is valuable in showing that quality of life is a dimension of meaning associated with maintaining a sense of social worth.
Past research suggests that dementia care staff are vulnerable to the development of burnout, which has implications for staff well-being and hence the quality of care for people with dementia. Studying personal vulnerability factors in burnout is important as it can guide staff training and support. Attachment theory suggests that adult attachment styles affect caregiving relationships and individuals’ responses to stress, providing a framework for understanding caregivers’ styles of coping. This cross-sectional survey study examined relationships between staff attachment styles, geriatric nursing self-efficacy, and approaches to dementia in burnout. Seventy-seven members of dementia care staff working on inpatient wards for older people completed self-report questionnaires. Insecure attachment, lower levels of self-efficacy, and more optimistic attitudes in staff were related to higher levels of burnout. Staff training on the role of attachment in dementia care is recommended. Further research is required to explore mediating factors between adult attachment styles and burnout.
This paper reports on a study which explored the views and attitudes of family members towards the sexual expression of residents with dementia in residential aged care facilities in two states in Australia. Recruitment was challenging and only seven family members agreed to an interview on this topic. Data were analysed using a constant comparative method. Family were generally supportive of residents’ rights to sexual expression, but only some types of behaviours were approved of. There was an acknowledgement that responding to residents’ sexuality was difficult for staff and many families believed that they should be kept informed of their relative’s sexual behaviours and moreover be involved in decision making about it. Findings suggest the need for family education and a larger study to better understand the views and motivations of family carers and how these might impact on the sexual expression of the older person with dementia living in residential aged care.
The aim of this study was to use artistic expressions on a theatrical stage for communicating life with dementia, as portrayed in literary texts and to explore whether such communication would help relatives of people suffering from dementia gain knowledge of their situation. Life with dementia was portrayed through four theatre performances with actors reading excerpts from literary texts combined with music. Relatives were invited to the performances and to participate in focus groups following the events. Analysis revealed that the participants recognized episodes in the texts and were touched. This resulted in new knowledge. The aesthetic expression was of great significance. The use of the theatre stage as an arena for communicating knowledge became a meaningful experience. The performances enabled identification with roles on the stage, created a feeling of community with the audience and contributed to an experience of dignity.
Objective: To undertake a systematic inquiry into the experience of living with dementia in the community.
Design: Action research, underpinned by critical hermeneutics, brought together action and reflection, theory and practice to generate knowledge. Data were gathered by interviews and observations in participants’ homes, and focus group discussions in community settings.
Participants: Eleven people with mild to moderate dementia and their primary caregiver aged 59–84, living in Auckland, New Zealand.
Results: The findings reveal a conflict between living positively with dementia, and enduring the negative attitudes that typify the dominant social discourse. The central argument arising from the findings is the significance of personal attitudes.
Conclusions: Implications for policy makers, health care providers, and caregivers highlight the need to change the ways in which dementia is perceived. The pursuit of positive attitudes will do much to change social perceptions and enable people with dementia to live with a sense of well-being.
Aim: To study the influence of cultural believes on the acceptance and accessibility of dementia services by patients from British Minority Ethnic (BME) groups.
Results: It is noted that non-White ethnic populations rely more on cultural and religious concepts as coping mechanisms to overcome carer stress. In British Punjabi families, ageing was seen as an accepted reason for withdrawal and isolation, and cognitive impairment was rarely identified. Illiteracy added another complexity, only 35% of older Asians in a UK city could speak English, 21% could read and write English, while 73% could read and write in their first language. False positive results using Mini Mental State Examination was found to be 6% of non-impaired white people and 42% of non-impaired black people. Cognitive assessment tests under-estimate the abilities in BME groups. Wide range of variations among white and non-White population were found, contributors are education, language, literacy and culture-specific references.
There is increasing recognition that dementia in people under 65 years represents a unique challenge to sufferers and services alike. However, by either ignoring this population or sampling them together with older adults, current research has failed to reflect this. This study explored the specific experience of living and coping with Alzheimer’s disease in younger life from the perspective of those diagnosed. Semi-structured interviews were analysed using interpretive phenomenological analysis, and four themes were identified: ‘disruption of the life-cycle’, ‘identity’, ‘social orientation’ and ‘agency’. The experience of living and coping with young onset Alzheimer’s disease was strongly situated within an individual’s social context. Most significantly, participants felt too young to develop the disease and felt out of time with age-related psychological tasks. Coping strategies that attempted to redress and normalise the life-cycle were identified. The contributions of the study are discussed in the context of the human development literature.
This pragmatic, exploratory qualitative study, as part of a larger funded research project, sought to explore families’ perspectives on what it means to value a person with dementia and how this value might influence the quality of life of people with dementia. In-depth interviews were conducted with 20 family members who used one long-term care service provider in Australia. Families described the factors influencing a positive quality of life for the person with dementia as being related to the environment and, in particular, to the resident’s room, supportive staff and individualised care that valued the person’s life experience. Family also reported a negative impact on quality of life when staff and the care facility neglected to provide an individualised approach. This study highlights the importance of demonstrating the value of the person with dementia, the family role and partnerships of care.
Dementia accounts for one in three deaths among people aged 65 and over, but end-of-life care for people with dementia is often sub-optimal. Palliative care for people with dementia poses particular challenges to those providing services, and current policy initiatives recommend education and training in palliative care for those working with patients with dementia. However, there are few evaluations of the effectiveness of dementia education and training. This paper presents a narrative review undertaken in 2011–2012 of evaluations of palliative care education for those working with people with dementia at the end of life. A total of eight papers were identified that described and evaluated such palliative care education; none reported benefits for people with dementia. There is a clear need to develop and evaluate educational interventions designed to improve palliative and end-of-life care for people with dementia. Some suggestions for educationally sound approaches are discussed.
Research on dementia care settings has primarily focused on routine aspects of life, including mealtimes, bathing procedures, etc. However, studies rarely explore how individuals with dementia interact in these settings during the intervals between routines. This study aimed to analyze how residents actively carved out spaces that provided temporary respite from institutional life, termed "framing respite spaces." Ethnographic data was collected over five months in a dementia care setting in Sweden. Frame analysis was employed to investigate residents’ shared understanding of non-task-orientated situations. The results showed that individuals with dementia adjusted to institutional order, but also actively created respite spaces through conversation. Interestingly, individuals with dementia interpreted conversational cues and often acted logically according to a shared definition of the specific situation. These findings showed that looking beyond task-orientated interactions between staff and residents can provide a more detailed picture of everyday life in dementia care settings.
Atypical and early-onset dementias can be particularly problematic for family caregivers, and support groups aimed at memory loss and Alzheimer’s disease are not always helpful. Unfortunately, little has been developed specifically for caregivers of individuals with atypical dementias such as the frontotemporal dementias. Compounding the lack of access to interventions targeted specifically at caregivers of individuals with atypical and early-onset dementias are the unique needs of rural caregivers. Due to the relative infrequency of these particular dementias and the large geographical distances between rural caregivers, technology-facilitation is required for any group-based intervention. This paper describes the development of a secure telehealth videoconferenced support group for rural spouses of individuals with atypical and early-onset dementias. In addition, we provide preliminary evidence of effectiveness and describe a template for future groups based on the key therapeutic aspects of this novel technology-facilitated intervention.
This paper describes an innovative demonstration program called Side by Side that was initiated to assess the feasibility of supported workplace engagement for people with younger onset dementia. Seven people with mild dementia work one day per week beside a work-buddy in a large metropolitan hardware store. Work-buddies are store employees who have undergone dementia training. Work duties are negotiated at the start of each shift and include restocking, plant care, assembling display stock and serving customers. All participants have been able to adapt to the workplace environment and some now talk about ‘their customers’. Family carers have reported a positive impact on self-esteem and life satisfaction as a result of the workplace experience. This evaluation of feasibility has exceeded all expectations and has demonstrated that it is possible to offer meaningful activities for people with mild dementia if an appropriate framework of support is provided.
This qualitative review explored the impact of dementia on marriage. The method was informed by systematic review and qualitative research methodologies. A comprehensive search of major databases was undertaken. The search identified 115 studies on the topic; 23 met the inclusion criteria and 19 were appraised as being of good methodological quality. Two major themes and five sub-themes emerged from the analysis of included studies, transition and loss. The theme of transition encompassed the three sub-themes of relationship, roles and intimacy and reflected the changes in the marriage and marital relationship that accompanied dementia. The theme of loss encompassed the two sub-themes of loss of a partner and loss of a marriage, which reflected the many losses that accompanied dementia. However, transition and loss were inter-related, because each change was accompanied by loss and each loss produced another change in the marriage.
Sleep disturbances are common with dementia and can adversely affect waking function. However, the perspectives of people with dementia and their family caregivers concerning their sleep are under-researched. We conducted three focus groups with 12 community-dwelling pairs (a person with dementia and their family caregiver). Discussions addressed sleep disturbances, coping strategies, and beliefs and attitudes surrounding sleep. Thematic analysis indicated that dementia-related sleep disturbances were common, including confused awakenings and dementia-related behaviors at night, changes to sleep timing, and nightmares. Common issues for caregivers included being woken at night, having problems getting back to sleep, trips to the bathroom, and daytime sleepiness. Participants often normalized their sleeping problems and had developed a number of coping strategies. These findings highlight the impact that sleep disturbances can have on people living with dementia. Their experiences and beliefs need to be considered for developing effective interventions to improve sleep, waking function, and wellbeing.
Care for the person with dementia requires understanding of the person’s perspective and preferences, integrated with knowledge of dementia’s trajectory and appropriate care. Version One of the Dementia Knowledge Assessment Tool addressed such knowledge in care workers; Version Two is for families as well as staff. Content validity was established during development. Revisions addressed clarity, time for completion, and reliability. When 671 staff completed Version One before an education intervention, internal consistency reliability estimates exceeded 0.70. Validity was supported by higher scores in professional versus nonprofessional staff and following the education. Version Two was used with 34 family carers and 70 staff members. Internal consistency reliability (Cronbach’s alpha coefficient) was promising (0.79, both groups). Completion was within 15 minutes. Median correct responses (from 21) were 14 for families (range 4–20) and 16 for the staff (range 3–21). Eighteen staff members (26%) and two family carers (6%) reported substantive dementia education. Inclusion of the person with dementia in care planning is often limited because of a late diagnosis and the progressive impacts of the condition. Establishing a shared staff–family understanding of the dementia trajectory and care strategies likely to be helpful is therefore critical to embarking upon the development and implementation of collaborative long term and end-of-life care plans. Version Two can help establish needs for, and outcomes of, education programs and informational resources in a way that is feasible, minimises burden, and facilitates comparisons across family and staff carer groups.
Background: The creative arts can integrate humanistic experiences into geriatric education. This experiential learning case study evaluated whether medical student participation in TimeSlips, a creative storytelling program with persons affected by dementia, would improve attitudes towards this patient population.
Methods: Twenty-two fourth-year medical students participated in TimeSlips for one month. The authors analyzed pre- and post-program scores of items, sub-domains for comfort and knowledge, and overall scale from the Dementia Attitudes Scale using paired t-tests or Wilcoxon Signed-rank tests to evaluate mean change in students' self-reported attitudes towards persons with dementia. A case study approach using student reflective writing and focus group data was used to explain quantitative results.
Results: Twelve of the 20 items, the two sub-domains, and the overall Dementia Attitudes Scale showed significant improvement post-intervention. Qualitative analysis identified four themes that added insight to quantitative results: (a) expressions of fear and discomfort felt before storytelling, (b) comfort experienced during storytelling, (c) creativity and openness achieved through storytelling, and (d) humanistic perspectives developed during storytelling can influence future patient care.
Conclusions: This study provides preliminary evidence that participation in a creative storytelling program improves medical student attitudes towards persons with dementia, and suggests mechanisms for why attitudinal changes occurred.
This paper explores the reported difficulties and satisfactions with diagnostic processes and post-diagnostic support offered to people with dementia and their families living in the largest remote and rural region in Scotland. A consultation with 18 participants, six people with dementia and 12 family members, was held using semi-structured interviews between September and November 2010. Three points in the diagnostic process were explored: events and experiences pre-diagnosis; the experience of the diagnostic process; and post-diagnostic support. Experiences of people with dementia and their carers varied at all three points in the diagnostic process. Participant experiences in this study suggest greater efforts are required to meet Government diagnosis targets and that post-diagnostic support needs to be developed and monitored to ensure that once a diagnosis is given people are well-supported. Without post-diagnostic provision Government targets for diagnosis are just that, quota targets, rather than a means to improve service experiences.
This study had two objectives: firstly, to assess and compare the frequency and circumstances of agitation and, secondly, to generate decision-making aids for the treatment of agitation patients by applying a nursing intervention in cases of dementia and agitation. For that purpose, 1002 measurements of open nursing interventions in cases of agitation were obtained over a period of 11 weeks in two nursing homes in the city of Zurich and in the nursing home Sonnweid. Before, during and after two intervention periods of four weeks each, data were collected for 60 persons suffering from severe dementia. The results show that two-thirds of the residents were never agitated, one-quarter was moderately agitated and only very few suffered from medium-to-severe agitation. In almost half the cases, agitation occurred while the person was alone (46%), followed by cases of agitation as a constant state (26%). There was rarely any agitation while the residents were engaged in activities. After analysing 433 documented cases, it turned out that the most successful care interventions were avoiding noise, accompanying the person to the toilet, communication/validation, walking about/movement and administering beverages. Being based on newly translated observational methods and a unique longitudinal study design with combined intervention, this study provides important insights into how agitation in dementia can be influenced within the care context, as well as a practical evaluation of interventions specific to different institutions.
Electronic tracking through GPS (global positioning system) is being used to monitor and locate people with dementia who are vulnerable to becoming lost. Through a review of the literature and an original study, this article examined ethical issues associated with use in a domestic setting. The qualitative study consisted of in-depth interviews with 10 carers who were using electronic tracking. The study explored the values, beliefs and contextual factors that motivated carers to use electronic tracking. It examined the extent of involvement of the person with dementia in decision-making and it explored the various ethical dilemmas encountered by carers when introducing the tracking system. As an issue that emerged from the interviews, specific attention was paid to exploring covert usage. From the study findings, recommendations have been made for research and practice about the use of electronic tracking in dementia care.
This paper is a report of an analysis of the concept of reminiscence in dementia and highlights its uses as a therapeutic intervention used on individuals with dementia. No single definition of reminiscence exists in healthcare literature; however, definitions offered have similar components. The term life review is commonly used when discussing reminiscence; however, both terms are quite different in their goals, theory base and content. This concept analysis identified reminiscence as a process which occurs in stages, involving the recalling of early life events and interaction between individuals. The antecedents of reminiscence are age, life transitions, attention span, ability to recall, ability to vocalise and stressful situations. Reminiscence can lead to positive mental health, enhanced self esteem and improved communication skills. It also facilitates preparation for death, increases interaction between people, prepares for the future and evaluates a past life. Reminiscence therapy is used extensively in dementia care and evidence shows when used effectively it helps individuals retain a sense of self worth, identity and individuality.
Illness such as dementia has particular linguistic and cognitive difficulties, not the least of which is its depiction in narrative, which may not be taken seriously. This paper builds upon a recently published manuscript by the authors, that describes a methodological approach utilising structural and thematic forms of narrative analysis to keep the person with dementia ‘centre stage’ in their own life story narrative. The aim of this paper is to utilise the same methodological approach and data to explore the narrative threads of a life-long disability, as experienced by a person called Janet who lives with dementia. Janet’s story locates disability not as personal impairment but within the social and cultural context of family and religious life. This contributes to a better understanding of resilience built up over time; in so doing, provides further insight into Janet’s enduring sense of self as she embraced a more challenging journey along the pathway of dementia.
This article considers the work of a number of contemporary British poets who have attempted to articulate some of the experiences that dementia entails. The unique potential of poetry as a means of portraying the dislocations and reinventions of self that dementia involves has been mostly overlooked. The insights offered by critical gerontology are central to this article. This perspective calls for critical thought about the ways in which dementia has been socially constructed. The challenges posed by poets such as Vuyelwa Carlin, Valerie Laws and Jo Shapcott in particular, are examined. The complex poetic representations offered by these poets acknowledge the pathological declines of dementia and simultaneously celebrate the individuality and life of their subjects. Considering dementia with reference to the work of contemporary poets and critical gerontology is one way in which we can deepen our understanding of what this illness involves and humanise those who suffer from it.
This paper evaluates how emergent age-based factors may impact upon the experience of dementia. A review of selected literature is undertaken to explore how personhood has been conceptualised in relation to dementia. It is then highlighted that very little literature explicitly addresses personhood with reference to young onset dementia. Young onset dementia is defined, and evaluation is then undertaken of the distinctive age-based factors that might shape the experience of the condition. It is noted that whilst there are separate literatures on both personhood and young onset dementia, there appears to be little endeavour to draw these two strands of thought together. The distinctive factors that shape young onset dementia suggest that a more heterogeneous perspective should be developed that accounts more appropriately for how personal characteristics shape the lived experience of dementia. The paper concludes that further research should be undertaken that has an explicit focus on personhood and young onset dementia.
Objective: The aim of this study was to test the effectiveness of writing poetry on psychological functioning in people with early stage dementia.
Method: A series of poetry writing workshops was conducted with four women, at the end of which a one-on-one short structured interview was conducted.
Results: All of the women said that they benefited from the workshops, but their experiences differed greatly. Themes included competence and self-efficacy, personal growth, wanting to contribute and poetry writing as a way of coping with the progression of the condition.
Conclusion: Creative activities such as writing poetry hold promise for enhancing the quality of life of people with dementia.
This article describes a Dementia Focused Performance Management Programme run for care home managers in the north-west of England. The programme highlighted the challenges faced by managers in terms of complying with policy changes and providing adequate supervision and training for care staff in dementia care. It proposes ‘turn around simulations’ as a way of engaging more participatory approaches to raising standards but recognises the barriers to achieving this created by the limited amount of time that managers have to attend outside meetings and the need to recognise that there is a competitive marketplace among providers.
The experience of being a carer of a person with dementia at the end of life is expressed in these 12 accounts. This is a synthesis of the concerns and challenges for carers at the end of life. These accounts are often insightful and provide several views of carers’ and professionals’ experience. Having a close relationship as a carer gives a unique and poignant view. What emerges from this review is a range of perspectives that provide contrasting views of the heterogeneity of carers and professionals. This may be helpful for professionals and policy makers to consider when planning end-of-life care strategies for people with dementia and insights drawn from hearing directly from carers may be powerful learning tools.
Objectives: There is a paucity of research surrounding disclosure from the perspective of caring partners, therefore this research explores how caring partners understand and make sense of diagnostic information.
Method: Semi-structured interviews were conducted with 10 spouses of people with dementia. Interviews aimed to elicit participants’ understanding of dementia and the way that information was used to make sense of dementia. Interviewee accounts were analysed using interpretative phenomenological analysis.
Results: Four main themes emerged: lack of information; personal understanding and implications for adjustment; societal understanding and persistent stigma; and lack of partnership working.
Conclusions: The analysis indicated a lack of information and continued support following a diagnosis. In the absence of information and support, caring partners described difficulty understanding and adjusting to behavioural, physical and psychological changes in their partner. A greater understanding of the condition was beneficial in terms of adjustment and emotional responses to a partner.
Specialist community dementia nurses are an appropriate sample to investigate longer-term decision-making and end-of-life care planning. Implemented in 2007, the Mental Capacity Act (MCA) provides opportunities for assisting with planning and making decisions on others' behalf, and may be expected to be entrenched within clinical practice. We conducted follow-up qualitative interviews with 15 community-based dementia nurses to detect changes and developments in views and practices of the MCA. Thematic analysis identified recurrent themes and developed into a coding framework. At Time2, there was greater awareness of general and specific principles of MCA and greater confidence in using it. There was greater involvement in discussing planning finances, less so in end-of-life-care. Some participants were concerned about lack of understanding amongst other professionals and felt more public awareness was required. Supplementary training, opportunities for mentoring and supervision may develop greater confidence among dementia practitioners and support their roles in informing and advising people with dementia and carers.
We examined experiences and concerns among caregivers of community-dwelling people with dementia from two ethnic groups. We conducted a thematic analysis of responses to the question, ‘What is your life like as a caregiver?’ in nine focus groups (n = 75) with Filipino and non–Hispanic White caregivers. Constant comparison methods identified themes by ethnicity. Experiences and concerns expressed across groups were related to care recipient symptoms commonly associated with dementia, including severe memory loss and behavioral changes. Participants in both ethnic groups described strategies that help them cope, such as receiving help from family and friends, receiving respite support, and participating in support groups. Filipino caregivers more often emphasized positive aspects of caregiving, whereas Whites often expressed that others do not understand the daily experiences of caregiving. Filipinos more commonly described caregivers as a ‘good person’ or ‘saint’ and emphasized that caregiving made them stronger.
This paper shares outcomes from the evaluation of a community project where comedy activities were introduced into a day centre for older people with dementia as a result of a partnership between the day centre, a local university and a specialist comedy provider. Four workshops were provided using improvisatory activities and comedy, as a medium to engage older people in reflecting on aspects of their care environment. The main output resulted in a 30 minute ‘mockumentary’ of the ‘Her Majesty the Queen’ visiting the day centre, in the form of a digital reusable learning object to be used by social work and mental health professionals. The evaluation demonstrated some additional outcomes for those involved and highlighted the benefits of laughter and fun in promoting a positive climate.
Primary care is ideally placed to recognise and manage dementia and yet dementia can be overlooked or misattributed by primary care practitioners and is underdiagnosed. This might be explained by a lack of formal training in the diagnosis of dementia combined with a reluctance to diagnose due to its associated stigma. This paper describes focus group work with service users, carers and health professionals, conducted to develop an educational intervention for primary care promoting person-centred responses to people experiencing cognitive decline and dementia. Data was analysed thematically and four themes emerged: Reframing dementia as cognitive decline (Individual level); triggers for the recognition of dementia (Practitioner level); engaging the whole primary care team (Practice level); the relationship between primary and secondary care (Service level). Findings are discussed in the context of their contribution to challenging attitudes to dementia in primary care and the positive aspects of person-centred primary care for dementia.
Research is limited on end-of-life treatment decisions made by African American family caregivers. In a pilot study, we examined the feasibility of implementing an advance care treatment plan (ACT-Plan), a group-based education intervention, with African American dementia caregivers. Theoretically based, the ACT-Plan included strategies to enhance knowledge, self-efficacy, and behavioral skills to make end-of-life treatment plans in advance. Cardiopulmonary resuscitation, mechanical ventilation, and tube feeding were end-of-life treatments discussed in the ACT-Plan. In a four-week pre/posttest two-group design at urban adult day care centers, 68 caregivers were assigned to the ACT-Plan or attention-control health promotion conditions. Findings strongly suggest that the ACT-Plan intervention is feasible and appropriate for African American caregivers. Self-efficacy and knowledge about dementia, cardiopulmonary resuscitation, mechanical ventilation, and tube feeding increased for ACT-Plan participants but not for the attention-control. More ACT-Plan than attention-control participants developed advance care plans for demented relatives. Findings warrant a randomized efficacy trial.
In the decade following the tragedies of 9/11, a US-led "War on Terror" has coincided with a US-led "War on Alzheimer’s disease". Not only has the rhetoric from these two wars overlapped and produced similar practical and conceptual problems, the campaigns have also become interwoven through the emerging public health issue of war-related head injuries, as well as a shared neglect for environmental contributions to human suffering. This article first explores similarities in the framing and prosecution of both wars, and then considers the long-term consequences of traumatic brain injuries (TBI) and traumatic environmental injuries (TEI) in the context of a society facing the increased prevalence of dementia. Ultimately, it is argued that addressing the challenges of cognitive aging and preventing violent social conflict both require a vernacular of higher ideals and values – as well as new language patterns rising out of the ecological movement – to trump the more expedient war rhetoric that has disproportionately marked public discourse around terrorism and Alzheimer’s disease during the past decade.
While our understanding of the subjective experience of dementia is growing, leisure’s role within that experience is less clear. This study, guided by hermeneutic phenomenology, aimed to understand the meaning and experience of leisure for persons living with early stage memory loss. Four participants with early stage dementia participated in interviews, participant observation, and photovoice, in which participants are given cameras and asked to take photos of their day to day lives (Wang, 1999). Data revealed that participants experienced daily life with dementia, including leisure, within a paradox of challenge and hope. They struggled with the changes they experienced as a result of dementia, such as muddled thinking, fluctuating abilities, draining energy, frightening awareness, and disquieting emotions. However, they found ways to tackle life with dementia, by reconciling life as it is, battling through by being proactive, living through relationships, being optimistic, and prolonging engagement in meaningful activity to live their lives with hope.
The need for dyadic intervention is enhanced with increasing numbers of older adults with early-stage dementia. The purpose of this paper is to review the effects of dyadic interventions on caregivers (CGs) and care recipients (CRs) at the early stage of dementia. Four databases, AgeLine, Medline, EBSCO, and PyscINFO were searched and relevant literature from 2000 onwards was reviewed. The twelve studies identified used a variety of intervention approaches including support group, counseling, cognitive stimulation, skill training, and notebook-keeping. This review suggests that intervention programs for early-stage dementia caregiving dyads were feasible and well accepted by participants. The reviewed studies provided rich evidence of the significance of mutual understanding and communication to partners’ well-being and relationship quality within the caregiving process. The findings suggest that these intervention approaches improved cognitive function of the CRs, social relations, and the relationship between the primary CG and the CR, although evidence of long-term effectiveness is lacking.
This paper offers a critique of Dementia Care Mapping (DCM) as a practice development and research tool by examining the psychometric properties and efficacy of DCM as a method for evaluating and enhancing care quality and quality of life. Based on a review and analysis of the published empirical studies utilizing DCM, it becomes apparent that there is mixed support for the tool’s validity and reliability. More importantly, there is a need for additional studies specifically examining the range of related assessments to provide conclusive evidence for DCM’s relevance, applicability and reliability as a practice and research tool in dementia care. The paper identifies methodological issues of implementation and use of DCM, i.e., coding practices, mapping duration. Also, a summary of the tool’s strengths and limitations in practice and research settings, areas for improvement and future research avenues is provided.
This study examines some of the micro-skills associated with the moment-to-moment decisions and actions involved in delivering group formulation sessions in dementia care settings. We discuss the therapeutic framework used by therapists from a number of Challenging Behaviour Services in the UK (Newcastle, Northumberland, South Tyneside, Teesside, Sutton and Merton, Northern Ireland) which is frequently referred to as the Newcastle or Colombo approach. Through a theoretical review and practice illustration, the study pays particular attention to the role of therapists’ questions and questioning styles in group formulation sessions, providing a framework which aims to facilitate care staffs’ understanding, reflection and empathy regarding their residents who are displaying ‘challenging behaviours’. The study also provides a potential guide to the training of therapists working in this area and thereby attempts to benefit clinical practices in an area where pharmacological approaches are usually the treatment of choice.
A growing body of literature suggests that the social context of experiencing dementia at a younger age may influence carers’ and particularly partners’ subjective experience and coping strategies. The current paper aims to explore the coping strategies adopted by six carers in order to adapt to changes in their relationship with their partner with young onset dementia. All were recruited from the north west of England and interpretative phenomenological analysis was used to analyse the data. Four major themes were evident: (1) ‘this is not happening’: the use of denial as a coping strategy; (2) ‘let’s not have anymore of this demeaning [treatment]’: stigma in young onset dementia; (3) ‘I’ve had to fight every inch’: struggling to maintain control of events and emotions; (4) ‘what will become of me?’: carers’ adaptation to loss. Comparisons with existing literature are made and implications for clinical practice are considered.
Urban centers are increasingly ethnically diverse. However, some visible minorities are less likely than their majority counterparts to seek and receive services and treatment for dementia. This study explored experiences of South Asian Canadians, Canada’s largest visible minority group, prior to dementia diagnosis. Six persons with dementia and eight of their family carers described their early perceptions of dementia-related changes, actions taken, including help seeking and diagnosis, and affective responses. Early signs were attributed to aging or personality. Even after cognitive enhancers were prescribed, some respondents continued to believe that the dementia symptoms were ‘normal’. Family carers’ affective responses may be related to their attributions. Before seeking medical attention, family carers modified physical or social environments because of symptoms. Help seeking was delayed up to four years, even with significant dementia symptoms. Recognition of a health problem was influenced by safety concerns, emergence of new symptoms following trauma, and treatment for other health problems. For some, relatives living outside the home or outside Canada were instrumental in recognizing a problem and convincing family carers and persons with dementia to seek medical attention. The pathway to diagnosis might be easier with outreach to help South Asian immigrants differentiate between normal aging and dementia. Symptom recognition by physicians treating other acute conditions was a portal to dementia services for others. Screening and referral in acute care could result in earlier diagnosis and treatment.
The aim of this study was to use Harré’s social constructionist theory of selfhood to describe how people with mild and moderate Alzheimer’s disease (AD) express their sense of self. The findings show that Self 1, the embodied sense of being a person, was expressed fluently by participants through the use of first-person indexicals. Self 2, the experienced personal attributes and life narrative, had undergone changes. Those changes were not entirely for the worse; participants had also developed new skills in managing life with AD. In a lifetime perspective, those changes were minor and participants perceived themselves to be basically the same people that they were before having AD. When constructing Self 3, the social personae, participants usually described being supported by others, but sometimes described being exposed to malignant positioning. They also feared that they might become more exposed to negative attitudes as their AD progressed. However, participants were understanding towards the offensive behaviours of others.
In Germany hourly care for people with dementia and relief for family caregivers are often delivered through social care groups. The existing literature describes these groups from the perspective of professionals or family caregivers, with little involvement of people with dementia. This qualitative study is the first step in exploring the experiences of people with dementia in social care groups. Five persons suffering from dementia in one group were interviewed and additionally observed with DCM in three group sessions. The interview transcripts were coded open and axial according to Grounded Theory. The DCM data was analysed descriptive. The main phenomena in the interviews are ‘familiar community’ and ‘personal meaning’. The DCM results show that people with lower cognitive function are excluded from most activities, whereas more staff attention causes better well-being. To create a ‘familiar community’ in a social care group, staff skills and knowledge are required.
The safe self management of medicines will be affected by the presence of dementia. A qualitative study using grounded theory was undertaken by a community nursing organisation in Melbourne, Australia, in order to develop a strength-based and person-centred approach to the assessment of medication ability. The perspectives of the person with dementia and their carers were explored to see if there were any significant differences in their medication management experiences when compared to those of older adults without dementia and their carers.
People with dementia are able to sustain self management of their medicines using established routines and strategies. As cognitive changes affect short-term memory, external strategies and task allocation to family members are introduced by the individual to support their continuing independence. The family member assumed the carer role as their concern for medication safety increased, but this role engendered stress and a burden that was unacknowledged by the health professional.
This paper discusses theoretical models for understanding dementia and how these are emerging in the formation and development of dementia care policy across the UK. Dementia attracts multi-disciplinary and multi-professional questions and responses. Three broad theoretical models underpin dementia care policy (as well as practice and research): biomedical, psycho-social and social-gerontological. These are critically assessed and discussed in relation to illustrative examples of dementia policy across three policy regions of the devolved UK. The contribution and implications of theoretical models of dementia policy highlight the importance of recognising how different theoretical understandings of dementia influence dementia policy. The development and improvement of policy and practice in the area of dementia care require an understanding of the often implicit theoretical approaches to dementia.
Objectives: The aim of this overview is to present the developments of music therapy in France, its techniques, mechanisms and principal indications, mainly in the context of Alzheimer's disease.
Methods: An international review of the literature on music therapy applied to Alzheimer's disease was conducted using the principal scientific search engines. A work group of experts in music therapy and psychosocial techniques then considered the different points highlighted in the review of literature and discussed them.
Results and Discussion: Clinical and neurophysiological studies have enlightened some positive benefits of music in providing support for people with Alzheimer's disease or related disorders. Music therapy acts mainly through emotional and psycho-physiological pathways. It includes a series of techniques that can respond to targeted therapeutic objectives. Some studies have shown that music therapy reduces anxiety, alleviates periods of depression and aggressive behaviour and thus significantly improves mood, communication and autonomy of patients.
Conclusion: Psychosocial interventions, such as music therapy, can contribute to maintain or rehabilitate functional cognitive and sensory abilities, as well as emotional and social skills and to reduce the severity of some behavioural disorders.
Informal caregiving for a person with dementia often takes place within a health care triad, whose members include the caregiver, the care-recipient and the health care-professional. The aim of the current study was to explore how the members work together with this triadic context. Six spousal caregiving dyads and the three Admiral Nurses who worked with the couples were interviewed. Transcripts of these interviews were analysed to form six case studies, each containing the perspectives of the three members of the triad. The processes emerging in these case studies were encompassed under an overarching dynamic process of ‘negotiating the balance’. This describes the ongoing struggle of the members to balance the views of the other members against their own needs. Coalitions could occur as members worked together to tackle problems. The findings of this study highlight the importance of exploring the perspectives of all members of the triad. This should help health care professionals to improve the quality of the support they provide to caregivers and care-recipients.
In recent years there has been increasing interest in how different aspects of object relations theory might apply to dementia. While attachment theory in dementia has been well studied, there have been no systematic investigations of the way in which transitional objects are used by people with dementia. This study explores the relationship people with dementia have with physical objects using a focussed ethnographic method. Twenty-one residents and the staff of a care home for people with dementia were observed over a two-month period. Observations were recorded and analysed in light of Winnicott’s criteria for transitional objects and incorporated the work of other key theorists. The ethnography found evidence that people with dementia have varied relationships with objects and can employ objects in a transitional way. The paper then explores the implications of this research for understanding the function of transitional objects for people with dementia. The findings suggest that that Winnicott’s theory of transitional objects can provide a framework for understanding some of the processes of dementia.
Dementia is a costly condition and one that differs from other conditions in the significant cost burden placed on informal caregivers. The aim of this analysis was to estimate the economic and social costs of dementia in Ireland in 2010. With an estimate of 41,470 people with dementia, the total baseline annual cost was found to be over 1.69 billion, 48% of which was attributable to the opportunity cost of informal care provided by family and friends and 43% to residential care. Due to the impact of demographic ageing in the coming decades and the expected increase in the number of people with dementia, family caregivers and the general health and social care system will come under increasing pressure to provide adequate levels of care. Without a significant increase in the amount of resources devoted to dementia, it is unclear how the system will cope in the future.
The objective of the study was to investigate the effect of introducing a dance-based psychomotor intervention using Danzón (Latin ballroom) for people with dementia in care homes. This was a grounded theory qualitative study. Thirteen of the 22 participants had dementia and were care-home residents. The remaining participants were care staff and facilitators of the dance sessions. Interviews were undertaken with seven people with dementia and nine staff, resulting in two separate sets of grounded theory methodologies. Two conceptual models, outlining positive outcomes and negative concerns of the use of Danzón were developed, depicting the experiences of people with dementia and care staff respectively. Danzón psychomotor intervention was found to enhance positive emotional states and general levels of satisfaction for both people with dementia and care staff. The details of these findings have been used to design a quantitative study.
In order to understand the words and deeds of dementia patients that we find very hard to explain or understand, we have paid attention to the self-awareness ability of dementia patients, the intellectual subject that integrates their own intellectual functions, and created ‘a model for interpreting puzzling words and deeds of dementia patients from the viewpoint of self-awareness’. The purpose of this study is to explain the reasons why dementia patients become unable to successfully perform activities of daily living (ADL) with advancement of dementia, using our model to present viewpoints understandable to caregivers. We classified dementia inpatients of a geriatric health services facility into four stages, using the model of self-awareness ability (consisting of ‘theory of mind’, ‘self-evaluation’ and ‘self-consciousness’) that was constructed by combining ‘theory of mind’ and Lewis’s developmental model of cognition and emotion. Furthermore, we observed and documented scenes from daily life, and we interpreted the reasons why patients become unable to seek assistance from others for ADL, based on the model. We came to understand why the patients could not seek assistance from others, because the patients who failed in the task of ‘theory of mind’ were unable to self-assess their own mind and the minds of others, and those having failed in the task of ‘self-evaluation’ could not evaluate their own situation.
Background: Successful implementation is a vital precondition for investigating the outcome of care innovation. This study concerned the evaluation of the implementation of integrated emotion-oriented care (IEOC) in psychogeriatric nursing home wards. The main question was whether the trained caregivers actually applied the knowledge and techniques of IEOC during their daily work.
Methods: The study was conducted within the framework of a randomized clinical trial into the effectiveness of IEOC in 16 wards. Preceding the experimental period, staff from 16 wards were educated and trained to work with a standardized care plan, resulting in a similar level of quality of care at the start of the trial. On the experimental wards IEOC was then implemented by training on the job in addition to training courses for personnel. To examine the implementation effectiveness, a self-report questionnaire, ‘Emotion-oriented Skills in the Interaction with Elderly People with Dementia’, was administered at baseline and after 7 months to a sample of caregivers from the experimental and the control wards. In addition, participant observation was conducted on four experimental and four control wards, and time spent by care personnel on different type of care tasks was registered.
Results: The implementation of IEOC resulted in increased emotion-oriented skills and more knowledge of the residents among the caregivers. Providing IEOC was not more time consuming for the caregivers than providing usual care.
Conclusion: This study shows that the implementation of IEOC was effective. It is recommended that in intervention studies the correct application of a new intervention or care approach is examined before jumping to conclusions about the effectiveness of the intervention or care approach itself.
Early diagnosis of dementia is important, but implications for care shared between primary and secondary care remain uncertain. We explored attitudes and expectations of Edinburgh’s general practitioners (GPs) regarding current sharing of care for dementia.
Surveys were distributed to all 335 Edinburgh GPs; 79.7% were returned. Attitudes and expectations were examined, specifically whether dementia care was currently appropriately shared. Two-thirds of GPs were sure of their role and a similar number felt that care was appropriately shared. The latter opinion was not associated with individual GP factors, such as gender or length of time since qualification, or local levels of deprivation. However, there was a significant association with sector consultant psychiatrist (F = 2.79, df = 6, p = 0.012) and with the proportion of the practice list diagnosed with dementia ( = -0.13, p = 0.038).
The endangered relationship between GP and specialist could be a key target to improve shared care and early diagnosis of dementia.
Dementia is a challenging chronic illness that affects the patients and their families. Families often perform a full-time, specialised role, which requires expert knowledge and skills. This paper describes the evaluation of proFamilies-dementia (a programme developed to support families that care for a relative with dementia) using an innovative participatory methodology: photovoice, a qualitative method of research that uses photography and voice to access people’s experiences. The programme was evaluated in order to identify the positive and negative impacts of the intervention on individuals and families; the advantages and disadvantages of photovoice as a participatory tool were also captured. The sample consisted of six people from five families. Participants identified only positive impacts of the programme, including better emotional management, normalisation of feelings and increased focus on self-care. Photovoice facilitated access to the process of change initiated by proFamilies-dementia, described by a process of going beyond illness, negativity and loneliness.
This article discusses a comprehensive psychosocial program developed for a prison in California – the Special Needs Program for Inmate-Patients with Dementia (SNPID). It describes the individual steps of the program, their content and their application in a system that has safety and security as its highest priority. An important and innovatory aspect of SNIPD is the role of other inmates in supporting inmates with dementia. The article concludes that psychosocial interventions can be appropriately applied in prison settings and make a difference in the quality of life for inmate-patients with dementia.