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P4‐370: Eliciting Care Plan and Treatment Goals for Caregivers of Individuals with Alzheimer's Disease and Related Dementias: a Survey Pilot
Author(s) -
Majid Tabassum,
Asamoah Benedicta,
dosReis Susan
Publication year - 2016
Publication title -
alzheimer's and dementia
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 6.713
H-Index - 118
eISSN - 1552-5279
pISSN - 1552-5260
DOI - 10.1016/j.jalz.2016.07.115
Subject(s) - stakeholder , family caregivers , psychology , test (biology) , dementia , medicine , disease , gerontology , family medicine , paleontology , public relations , political science , biology , pathology
Background: Care plans for individuals with Alzheimer’s disease and related dementias (ADRD) often require input from family caregivers, yet prioritizing treatment outcomes and benefit-risk tradeoffs for care are often assessed by health care professionals. Preference elicitation methods such as discrete choice experiment (DCE) methods allow the assessment of trade-offs for competing treatment and care plan options as well as an understanding of what might be negotiable in care plans for family caregivers. Objective: Our objective was to both develop and test a family-centered survey instrument to identify care plan priorities for family caregivers of individuals with ADRD. Methods: We used a mixed methods approach to identify and refine this survey instrument. The survey included a DCE instrument based on five attributes of treatment outcomes. Each attribute had three levels. A total of 15 choice-task profiles were shown and seven of the statements were displayed in a profile. Caregivers selected one most and one least important outcome from each choice-task profile that displayed six statements. Family caregivers (N1⁄425) completed the survey instrument, and treatment outcome priorities were assessed using mean best-worst scores (U). Mean U were ranked to by relative importance of outcome preferences. Feasibility was assessed via t-tests and 95% confidence intervals. Results:Overall participants were mostly white, female, and over 50% were caring for spouses at any stage of ADRD. Key stakeholder engagement was used to confirm relevance and definitions of the outcome goals for a larger sample in Summer 2016. From the pilot study, outcomes considered most important were: support from family members (U 0.18), participation in physical and occupational therapy (U 0.1), and living in a community with caregiving support (U 0.1). Least important outcomes were taking medication for behavior (U -0.1), medication to treat memory loss (U -0.07), and medication to treat mood (U -0.12), which are often recommended, yet might not be suitable to every individual or family caregiver. Conclusions: Using this approach can inform future care plans as well as shared decision making throughout ADRD.