April 06, 2016

d e m e n t i a: The international journal of social research and practice, - includes book reviews

Full text articles and books are available to fee paying members of Alzheimer’s Australia NSW by emailing NSW.Library@alzheimers.org.au
d e m e n t i a: The international journal of social research and practice, Volume 15, Number 1, January 2016


Dementia beyond 2025: Knowledge and uncertainties

Kenigsberg et al, (pp. 6-21).


Given that there may well be no significant advances in drug development before 2025, prevention of dementia–Alzheimer’s disease through the management of vascular and lifestyle-related risk factors may be a more realistic goal than treatment. Level of education and cognitive reserve assessment in neuropsychological testing deserve attention, as well as cultural, social, and economic aspects of caregiving. Assistive technologies for dementia care remain complex. Serious games are emerging as virtual educational and pleasurable tools, designed for individual and cooperative skill building. Public policies are likely to pursue improving awareness and understanding of dementia; providing good quality early diagnosis and intervention for all; improving quality of care from diagnosis to the end of life, using clinical and economic end points; delivering dementia strategies quicker, with an impact on more people. Dementia should remain presented as a stand-alone concept, distinct from frailty or loss of autonomy. The basic science of sensory impairment and social engagement in people with dementia needs to be developed. E-learning and serious games programs may enhance public and professional education. Faced with funding shortage, new professional dynamics and economic models may emerge through coordinated, flexible research networks. Psychosocial research could be viewed as an investment in quality of care, rather than an academic achievement in a few centers of excellence. This would help provide a competitive advantage to the best operators. Stemming from care needs, a logical, systems approach to dementia care environment through organizational, architectural, and psychosocial interventions may be developed, to help reduce symptoms in people with dementia and enhance quality of life. Dementia-friendly environments, culture, and domesticity are key factors for such interventions.


A qualitative study of patients' experiences of a nurse-led memory clinic

Stirling et al., (pp. 22-33).


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.


Couples constructing their experiences of dementia: A relational perspective

Merrick et al., (pp. 34-50).


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.


From social network to safety net: Dementia-friendly communities in rural northern Ontario

Wiersma, E. C., & Denton, A. (pp. 51-68).


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.


Family care for immigrants with dementia: The perspectives of female family carers living in the Netherlands

van Wezel et al., (pp. 69-84).


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.


Theoretical foundations guiding culture change: The work of the Partnerships in Dementia Care Alliance

Dupuis et al., (pp. 85-105).


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.


What is the current state of care for older people with dementia in general hospitals? A literature review

Dewing, J., & Dijk, S. (pp. 106-124).


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.


Beginning to explore the experience of managing a direct payment for someone with dementia: The perspectives of suitable people and adult social care practitioners

Laybourne et al., (pp. 125-140).


Following legal improvements made around mental capacity together with the Health and Social Care Act, it is now possible for a direct payment to be paid to a ‘Suitable Person’ to manage on someone’s behalf to purchase directly care and support services. People with dementia are a key group affected by this change in England of adult social care. We interviewed nine social care practitioners and seven Suitable People for people with dementia across five English local authorities to begin to examine their experiences of this new method of social care provision. Findings from thematic analyses suggest positive outcomes and multiple beneficiaries, but some challenges: potentially inappropriate processes, support planning, divergence in attitudes towards care and support outcomes. Implications for practice include obfuscation of recipients’ and Suitable People’s best interests and supporting practitioners to explore fully clients’ aspirations for care and support.

Personalisation and Dementia: A Guide for Person-Centred Practice,

Sanderson and Bailey present a clear guide to person-centred thinking tools, enabling the reader to develop skills and strategies to really think about what is important to someone they are providing care for and how to support them to live well.
The authors acknowledge that this book is not aimed at an academic audience and they direct the reader to books of related interest in the opening section of the book. This guide is ideal for both experienced care providers and readers without any previous knowledge or experience of personcentred care. Concepts and terminology are introduced with clear explanations, whilst informative figures and illustrations are provided to assist with learning and understanding. Contained within this useful guide are a range of person-centred thinking tools, from onepage profiles to communication charts and learning logs.
The guide is a really valuable and well-written toolkit, enabling the reader to rethink the way that they plan care and how this is delivered. The tools presented are easy to use and each chapter contains detailed personal examples and stories to exemplify how the tools can be used in practice.
The examples provided serve to highlight the importance of person-centred thinking and the positive impact that employing person-centred thinking tools can have...
if you would like to reserve this book  please email the Library nsw.library@alzheimers.org.au


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