December 21, 2016

The latest journal Dementia – The international journal of social research and practice, Volume 15, Issue 6, November 2016


Full text articles and books are available to members of Alzheimer’s Australia NSW by emailing NSW.Library@alzheimers.org.au

Co-production and engagement of people with dementia: The issue of ethics and creative or intellectual copyright

 Kate Swaffer

Articles

‘Singing for the Brain’: A qualitative study exploring the health and well-being benefits of singing for people with dementia and their carers

Sara Eldirdiry Osman  Victoria Tischler  Justine Schneider - pp. 1326–1339

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.

Development and effectiveness of an integrated inpatient and community service for challenging behaviour in late life: From Confused and Disturbed Elderly to Transitional Behavioural Assessment and Intervention Service

 Katrina Anderson  Michael Bird  Annaliese Blair  Sarah MacPherson - pp. 1340–1357

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.

Method

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.

Results

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.

Conclusion

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.

Football and dementia: A qualitative investigation of a community based sports group for men with early onset dementia

Laura Carone  Victoria Tischler  Tom Dening  ; pp. 1358–1376

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.

 

Healing words: A study of poetry interventions in dementia care

 Aagje M.C. Swinnen; pp. 1377–1404

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.

 

How does a woman with Alzheimer’s disease make sense of becoming cared for?

 Gayle Borley  Judith Sixsmith  Sarah Church ; pp. 1405–1421

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.

 

Burden of care, social support, and sense of coherence in elderly caregivers living with individuals with symptoms of dementia

Kari Stensletten  Frøydis Bruvik  Birgitte Espehaug  Jorunn Drageset ; pp. 1422–1435

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. 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.

 

Negotiating access to a diagnosis of dementia: Implications for policies in health and social care

 Sharon Koehn  Melissa Badger  Carole Cohen  Lynn McCleary  Neil Drummond ; pp. 1436–1456

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.

 

Citizenship as practice: Handling communication problems in encounters between persons with dementia and social workers

Österholm JH ,  Hydén L-C ; pp. 1457–1473

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.

The Thoughts Questionnaire (TQ) for family caregivers of people with dementia

 Karen A Sullivan  Elizabeth Beattie  Nigar G Khawaja  Gabriele Wilz  Lauren Cunningham ; pp. 1474–1493

Objectives

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.

Results

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.

Discussion

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.

 

Dementia, women and sexuality: How the intersection of ageing, gender and sexuality magnify dementia concerns among lesbian and bisexual women

Sue Westwood ; pp. 1494–1514

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.

 

Making sense of dementia: Exploring the use of the Markers of Assimilation of Problematic Experiences in Dementia scale to understand how couples process a diagnosis of dementia

 Katie Snow   Richard Cheston  Cordet Smart pp. 1515–1533

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.

The positive aspects of caregiving in dementia: A critical review of the qualitative literature

Joanna Lloyd  Tom Patterson  Jane Muers ; pp. 1534–1561

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 “not yet” horizon: Understandings of the future amongst couples living with dementia

Ingrid Hellström  Sandra Torrespp. 1562–1585

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.

 

Primary care-led dementia diagnosis services in South Gloucestershire: Themes from people and families living with dementia and health care professionals

Emily Dodd ,  Richard Cheston  Sarah Cullum  Rosalyn Jefferies  Sanda Ismail  Lauren Gatting  Tina Fear  Richard Gray ; pp. 1586–1604

Background

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.

Aim

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.

Results

Themes gathered into four main areas: ‘the journey’, ‘what next?’, ‘the benefits and limits of primary care’ and ‘are GPs getting it right’?

Conclusions

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.

 

Deferred or chickened out?’ Decision making among male carers of people with dementia

Michelle S. Sampson  Andrew Clark ; pp. 1605–1621

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.

 

Living with a diagnosis of behavioural-variant frontotemporal dementia: The person’s experience

 Julie Griffin  Jan R Oyebode  Joanne Allen ; pp. 1622–1642

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.

Barriers to leisure participation for people with dementia and their carers: An exploratory analysis of carer and people with dementia’s experiences

Anthea Innes ,  Stephen J Page ,  Clare Cutler ; pp. 1643–1665

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.

 

Shame, hope, intimacy and growth: Dementia distress and growth in families from the perspective of senior aged care professionals

Bruce Walmsley  Lynne McCormack  ;pp. 1666–1684

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.

 

Stigma, the medical model and dementia care: Psychological growth in senior health professionals through moral and professional integrity

 

Bruce D. Walmsley ,  Lynne McCormack ; pp. 1685–1702

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.

Personal message cards: An evaluation of an alternative method of delivering simulated presence therapy

Nina Evans Richard Cheston  Nigel Harris ; pp. 1703–1715

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.

 

Subjective quality of life of those 65 years and older experiencing dementia

Lois A Stewart-Archer  Afrooz Afghani  Christine M Toye  Frank A Gomez ; pp. 1716–1736

Background/Objectives

To describe how people experiencing dementia define quality of life and how this may be supported.

Design

Qualitative descriptive component of mixed methods cross-sectional study.

Measurements

Semi-structured interview questions. Rating of meeting life’s goals.

Results

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.

Conclusion

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.

 

Care assistant experiences of dementia care in long-term nursing and residential care environments

Rebecca Talbot  Gayle Brewer ; pp. 1737–1754

Care assistants have a unique insight into the lives of service users and those factors which may impede or enhance the delivery of high quality dementia oriented care. To address the paucity of research in this area, the present study examined care assistant experiences of dementia care in British long-term residential and nursing environments. Semi-structured interviews were conducted with eight care assistants and transcripts were analysed using interpretive phenomenological analysis. Super-ordinate themes emerging from the data were psychological wellbeing of the care assistant, barriers to effective dementia care, the dementia reality and organisational issues within the care environment. The study revealed important deficiencies in understanding and varying levels of dementia training. Whilst person centred strategies were being implemented, task orientated care remained dominant. Furthermore, care assistants reported taking the perspectives of those with dementia into account, and actively using these to develop relationship centred care.

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