February 05, 2015

Dementia : the international journal of social research and practice - January 2015

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

Editorial by Kate Swaffer, Consultant, Alzheimer’s Australia; Chair, Alzheimer’s Australia Dementia Advisory Committee
Dementia and Prescribed DisengagementTM
…I was told ‘to give up work, give up study, and to go home and live for  the time I had left’. By 2009, I had termed this Prescribed Dis-engagementTM, and I ultimately chose to ignore it. One has to ask the question: Why is it that one day I was studying a tertiary degree, working full time, volunteering, raising a family and running a household with my husband, and the next day, told to give it all up, to give up life as I knew it, and start ‘living’ for the time I had left?
p. 3-6 

A narrative analysis of poetry written from the words of people given a diagnosis of dementia
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.
p. 9-26 

Creativity and dementia: Does artistic activity affect well-being beyond the art class?
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.
p. 27-46 

Medication management concerns of ethnic minority family caregivers of people living with dementia
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.
p. 47-62 

Caregivers’ willingness-to-pay for Alzheimer’s disease medications in Canada
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.
p. 63-79  

A technology roadmap of assistive technologies for dementia care in Japan
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.
p. 80-103 

From evidence to practice: Using the RE-AIM framework to adapt the REACHII caregiver intervention to the community
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.
p. 104-113 

The comparison of quality of life among people with mild dementia in nursing home and home care—a preliminary report
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.
p. 114-125 

Changes in daily cognition and behavior of Alzheimer’s patients over time: A three-year evaluation using a daily cognition and behavior for Alzheimer’s disease scale
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.
p. 126-135

Book Reviews - the library holds copies of these books email us at nsw.library@alzheimers.org.au to reserve a copy
Karen Watchman (ed.), Intellectual disability and dementia research into practice
With the increased prevalence of people with intellectual disabilities and dementia, particularly those with Down syndrome, this is an area that deserves this assembly of international expertise. Dr Watchman has gathered contributions across the spectrum, which will appeal to practitioners, managers and commissioners. The book has a framework of three parts covering areas from the technical to the highly practical….

This book should appeal to a wide audience and provides a useful and diverse collection of chapters with practical examples that can be used in everyday practice. There is an appetite to embed the practices and ideas outlined here, (some are already well-established in intellectual disability services, for example personcentred planning) and hopefully this book will guide and inform future research and  development. These among other themes are constant threads throughout the chapters and this allows for a well-structured and essential read on a less than well-represented subject area.
Chris Sewards, Humphrey Booth Resource Centre, UK
p. 137-138 

Amanda Alders Pike, Improving memory through creativity
I recommend Improving Memory through Creativity for anyone working in a creative capacity with older adults. It is written from a clinical experience and evidence-based perspective, yet is easily readable and understandable. Alders Pike has created a go-to resource that I am thrilled to have in my library and will consult and recommend regularly.
Krista Schneider, Art Therapist, Canada


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