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Making Hard Choices: Respecting Both Voices
FCA Releases First Study of Persons with Cognitive Impairment and Their Caregivers to Explore Choice and Decision-Making for Daily Care
SAN FRANCISCO -- Family Caregiver Alliance has released the results of a groundbreaking study of decision-making about care for persons with mild to moderate cognitive impairment. The study, funded by The Robert Wood Johnson Foundation, has implications in both practice and policy.
The study aims to recognize the roles of both the person with cognitive impairment and his or her family caregiver regarding everyday care preferences and decisions. Findings of this study contradict the notion that persons with dementia do not possess sufficient capacity to state specific preferences and make care-related decisions.
Indeed, the study reveals that persons with mild to moderate cognitive impairment are able to:
- state consistent preferences and choices;
- participate in everyday care decisions; and
- express life-long values and wishes about the care they are currently receiving or will need in the future.
The subjects of the study were 51 pairs (dyads) of persons with cognitive impairment and family caregivers, recruited from FCA's client lists and from other San Francisco Bay Area agencies.
Two-thirds of the caregivers were spouses; 31.3% were adult children. 78.4% were female and the average age was 63.5 years.
Care receivers' average age was 75.6 years (range 39-89 years); the majority were male (68.7%); and suffered from Alzheimer's disease (51%).
Implications for Practice and Public Policy
A diagnosis of a dementing illness brings in its wake a complex decision-making process. Everyday care choices include such decisions as: when to stop driving, how to manage money, whether to purchase or use support services, when to accept care from family members and, at a more personal level, when to bathe and what activities to do.
The challenge is to educate policymakers, practitioners and researchers to take into account the views and preferences of the person with cognitive impairment and the needs and situation of the family caregiver. How to balance divergent perspectives will continue to be a challenge for those who work with persons with cognitive impairment and their family caregivers.
For professionals who provide services and care to this population, the study's findings underline the importance of exploring the values and wishes about care choices with the care recipient early on in the disease process. Persons with cognitive impairment and their family members can meet with a social worker to discuss what the person wants-or does not want-in terms of everyday care as the disease progresses. Increased understanding of the preferences of the person with cognitive impairment will improve the decision-making process, lead to more informed decisions, and reduce the strain on family caregivers and associated health costs.
In the public policy realm, long-term care programs should incorporate the concept of family caregiving, rather than focusing exclusively on the care receiver when cognitive impairment is an issue. According to the study's authors, few programs adequately address this critical policy area of supporting family caregivers to maintain their own quality of life. It is family caregivers who are today--and will continue to be in the foreseeable future--the major providers of long-term care and who will, ultimately, be left with the experience of implementing these challenging and difficult everyday care decisions.
The study's Principal Investigators were Lynn Friss Feinberg, M.S.W., of Family Caregiver Alliance and Carol J. Whitlach, Ph.D., of The Benjamin Rose Institute. The study was funded by a grant from The Robert Wood Johnson Foundation and its national initiative, Independent Choices: Enhancing Consumer Direction for People with Disabilities.
The grant also funded the development of two new fact sheets by FCA. Helping Families Make Everyday Care Choices is for professionals; Making Choices about Everyday Care is for individuals with cognitive impairment and their families. The fact sheets are $1.00 each by mail or available free on FCA's website at www.caregiver.org.
The study is available for $25 from Family Caregiver Alliance, 180 Montgomery Street, Ste.600, San Francisco, CA 94104. For more information, contact Lynn Friss Feinberg at (415) 434-3388, or visit the publications section on our website.
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