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DEMENTIA RESEARCH IN BC: PAST, PRESENT AND

FUTURE
Thursday January 26, 2006

Poster Abstracts

Winner of the Poster Competion: Elisabeth Antifeau

A Phased Pathway Approach to Dementia Care: Using Research to Create
Evidence Informed Clinical Recommendations. Elisabeth Antifeau, RN, MScN,
GNC(C), Clinical Lead for Dementia, Interior Health

Goal: To develop evidence-informed clinical recommendations and tools which support
staff to provide direct dementia care, assist managers to plan effective dementia care
services; and guide clinical educators in developing current and effective dementia
education.
Requirements: Clinical recommendations or tools must meet the following four criteria.
1. address the full spectrum of dementia, from prevention to end-of-life care;
2. be relevant for interdisciplinary health care providers;
3. meet cross-sectoral (acute, community, residential, mental health) care
environment needs for dementia care;
4. Be evidence-informed, a careful review of the known research literature and
clinical consultation with dementia experts.

Approach: A Phased Pathway approach has been undertaken, to identify common
clinical issues or concerns that occur as dementia progresses. The pathway starts with
a population health perspective of the pre-clinical phase of dementia, looking at
promoting brain health across the life-course, and preventing or slowing the
development of dementia. The pathway evolves to follow through to the mild cognitive
impairment, early, middle and late phases of dementia. The pathway describes the
unique physical, mental, emotional and social care needs of clients and caregivers at
different parts of the pathway.

Method: Clinical practice recommendations are developed from a methodical review of
the quantitative and qualitative research literature, graded for levels of best evidence,
and evaluated and distilled into practice recommendations within an inter-disciplinary,
cross-sectoral working group setting.

Outcomes: The results are high quality, sensible clinical recommendations of
reasonable academic rigour that are intended to lead health practitioners towards
clinical excellence in dementia care.
Finding a Voice: The Experiences of Chinese Family Members
Participating in Family Support Groups. Sing Mei Chan, MA, Doctoral candidate,
& Fellow, Centre for Research on Personhood in Dementia, University of British Columbia &
Deborah O’Connor, Ph.D., RSW, Director, Centre for Research on Personhood in Dementia
& Associate Professor, School of Social Work and Family Studies, University of British
Columbia.

There is a general understanding that family support groups can be an important source of
intervention for family members caring for an older, frailer or ill family member. Whether and
how family support groups may work, however, is less well understood, particularly within
ethnic minority groups. Being part of a larger project that explored the impact of family
support groups, this smaller study looked at how culture influenced the experiences of
Chinese family members participating in a support group. Personal, semi-structured
interviews were conducted with six family members, the majority of whom were providing
care to a family member with dementia. Data were analyzed against established themes of
the larger project using thematic analysis. Emergent cultural themes were explored. Analysis
suggested that FSG helped Chinese family members challenge cultural values and beliefs
that constructed ‘speaking out’ as maladaptive and repositioned ‘speaking out’ as an
important aspect of providing care. FSG helped family members find a language to effect
this repositioning by supporting members in their ability to raise questions and make
demands of the system. The main impact of FSG was, therefore, in the help it provided to
enable family members find a voice within the broader health care system.

Measuring Quality of Life for Eden Alternative Residents in Long-Term
Care. Michele Cook, New Vista Society, Burnaby, BC, Gloria Gutman & Norm O’Rourke,
Gerontology Dept. Simon Fraser University, Kristine. Theurer, New Vista Society, Yaacov.
Bachner, Ben-Gurion University, Beer-Sheva, Israel & Pat Kasprow, New Vista Society.

The Eden Alternative has gained popularity across North America as an approach to
improve the quality of life of older adults in long-term care (LTC). Central to this philosophy
is the belief that suffering among LTC residents results from the “three plagues” of
loneliness, boredom and helplessness (LBH). The association between these three
constructs and reduced life satisfaction was examined as part of an ongoing research
project measuring the effects of specialized music and rehabilitation programs among
residents of two urban LTC facilities in British Columbia (N=143). LBH and life satisfaction
were measured using existing well-validated tools modified to account for the effects of
dementing illness. The tools included the Dutch Loneliness Scale (Gierveld & Tilberg),
Beck’s Hopelessness Scale, Denier’s Life Satisfaction Scale, and the Geriatric Depression
Scale. LBH accounted for a significant portion of observed variance in resident Satisfaction
With Life scores (R-square=.29, p<.01). Of further note, each of these independent variables
provided unique and significant contribution to the prediction of (the absence of) life
satisfaction. These findings attest to the central role of LBH in the well-being of LTC
residents and the need to redress these plagues in accord with the precepts of the Eden
Alternative. Funded by the New Vista Society.
Environmental Correlates of Bathing-Related Agitation in
B.C. Special Care Units. Heather Cooke, B.A., M.A. Candidate & Gloria Gutman, Ph.D.
Professor, Department of Gerontology, Simon Fraser University

The bathing of cognitively impaired individuals in long-term care facilities is associated with
considerable distress and agitation among care recipients and significant job stress for care
providers. Both the organizational and physical environments of long-term care facilities are
believed to substantively impact resident agitation levels. To date, the relative contribution
of each of these environments with respect to bathing-related agitation has not been
systematically investigated. This poster reports findings from a study designed to
systematically describe the organizational (i.e., bathing policy, staff training, staff
assignment) and physical (i.e., provision of privacy, noise, lighting, temperature control,
homelike décor, bathing equipment) bathing environments in Special Care Units (SCUs)
across British Columbia, and to determine the relative contribution of these variables to
bathing-related agitation. An Agitated Behaviour Checklist, designed to measure the
number/type of agitated behaviours witnessed by bath aides over a two-week period, and a
Bathing Area Therapeutic Environment Rating Scale (BATHERS), designed to assess the
organizational and physical environmental features of each bathing area, were completed by
47 of the 90 SCUs in the province. Of the 1565 baths conducted during the study period,
46.8% involved some form of agitated behaviour. While the provision of initial and additional
staff training reduced the likelihood of bathing-related agitation, the presence of a bathing
policy and a dedicated bath team actually increased the likelihood of bathing-related
agitation. Of the physical environmental features, only the provision of privacy was found to
reduce the likelihood of bathing-related agitation. In order to enhance the quality of the
bathing experience for residents, it is suggested that facilities direct their resources to
improving the organizational bathing environment. Ms. Cooke is supported by a two year
Michael Smith Foundation for Health Research trainee award.

Narratives of the Self in Dementia. Alison Phinney, Ph.D., School of Nursing &
Centre for Research on Personhood in Dementia, University of British Columbia

Dementia is often assumed to reduce the person to merely existing in an endless sequence
of meaningless moments. But this common understanding overlooks how we are driven to
find meaning in our lives, especially when confronted with debilitating illness. The objective
of this interpretive phenomenological study was to understand how persons with dementia
perceive themselves to be living a life that is meaningful and worthwhile. 25 hour-long
interviews were conducted with nine persons with mild to moderate Alzheimer disease.
Analysis revealed two types of narratives demonstrating qualitatively distinct ways of taking
up this question of meaning in dementia. "Retained narratives" tell of how, despite their
suffering and loss, people understand their lives to be unchanged in important and essential
ways. "Shifting narratives" tell of how people shift their orientation to find new meanings
even while living through suffering and loss. While one or the other was predominent for
each person, most participants were living both types of narratives. These findings
contribute to an improved theoretical understanding of personhood in dementia, and also
suggest that person-centred dementia care needs to take into account how the self may be
simultaneously retained and changed for persons living with the disease. Funded by the
Neuroscience Nursing Foundation and Alzheimer Society of Canada
Family Voices: Analyses of Talk in Families with Alzheimer Disease or a
Related Disorder. Barbara Purves, Doctoral Candidate, Individual Interdisciplinary
Studies Graduate Program, University of British Columbia

The impact of disorders such as Alzheimer’s disease (AD) on families is widely recognized,
yet there are few studies focusing on family itself. The goal of this qualitative study was to
explore changes in family conversation associated with a diagnosis of progressive cognitive
decline, the meanings associated with those changes for family members, and the
implications of those meanings for the family as a unit. The project comprises case studies
of two families, one including a woman with AD, her husband, and their three adult children,
the other including a woman with nonfluent progressive aphasia, her husband, and their four
adult children. Methodology was based on symbolic interactionism and conversation
analysis, exploring meanings both as conscious reflection and also as constructions of
everyday talk. Constant comparative analysis of interviews conducted with each family
member identified meanings that each gave to the diagnosis and changes associated with it,
highlighting how consistencies and contradictions in these meanings were interwoven within
each family unit. Analysis of audiorecorded conversations between the diagnosed person
and other family members highlighted how those meanings were constructed in their talk
together. For the family with AD, a key finding was how the family negotiated changing roles
through everyday talk; for the family with progressive aphasia, a key finding was how family
interpreted and accommodated to their affected kin’s silence. Together, these case studies
inform our understanding of dilemmas, challenges, and strategies for families coming to
terms with progressive cognitive decline.

Training in Communication Enhancement for Dementia. Jeff A. Small, Ph.D.,
Associate Professor, School of Audiology and Speech Sciences, University of British
Columbia & JoAnn Perry, RN, Ph.D., Associate Professor, School of Nursing, University of
British Columbia

Communication problems in caring for an individual with dementia have a negative impact
on the well-being of both the caregiver and the care receiver. A new caregiver training
program called "TRACED" was developed to more comprehensively meet the
communication needs of family caregivers and persons with dementia. Drawing upon
findings from previous research and principles from communication accommodation theory
and the social construction of personhood, TRACED takes into account how communication
between persons with dementia and their caregivers is influenced by both the cognitive
deficits associated with dementia and caregivers' psychosocial approach to interacting with
the person. We believe that training caregivers in the use of compensating and connecting
strategies will lead to increased caregiver satisfaction when communicating with a family
member with dementia, thereby reducing stress in the dyad's interactions and improving
their quality of life. In this poster, we present an overview of the background and content of
TRACED, and review findings from a recent pilot study.