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February 05, 2015
Dementia : the international journal of social research and practice - January 2015
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?
A narrative analysis of poetry written from the words of
people given a diagnosis of dementia
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
Creativity and dementia: Does artistic activity affect
well-being beyond the art class?
Medication management concerns of ethnic minority family
caregivers of people living with dementia
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
Caregivers’ willingness-to-pay for Alzheimer’s disease
medications in Canada
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.
A technology roadmap of assistive technologies for
dementia care in Japan
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
From evidence to practice: Using the RE-AIM framework to
adapt the REACHII caregiver intervention to the community
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
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.
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).
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.
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.
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.
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.
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.
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 anddevelopment. 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
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