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Kales HC, Gitlin LN, Stanislawski B, Marx K, Turnwald M, Watkins DC, Lyketsos CG. WeCareAdvisor™: The Development of a Caregiver-focused, Web-based Program to Assess and Manage Behavioral and Psychological Symptoms of Dementia. Alzheimer disease and associated disorders. 2017 Jul 1; 31(3):263-270.
BACKGROUND/OBJECTIVES: Behavioral and psychological symptoms of dementia (BPSD) are nearly universal in dementia and associated with multiple negative outcomes. Current real-world management is largely pharmacologic, despite poor risk/benefit. The WeCareAdvisor was designed to enable family caregivers to assess, manage, and track BPSD using nonpharmacologic strategies. DESIGN: In-depth qualitative data were collected from family caregivers of people with dementia to inform: (1) style of approach and "look and feel" of the tool, and (2) the types of psychoeducation most needed by caregivers. RESULTS: We conducted 4 focus groups and a technology survey (n = 26) as well as additional individual semistructured interviews (n = 12) with family caregivers. Main themes of the qualitative work included: (1) need to minimize difficulty and training time; (2) importance of "one-stop shopping" for information; and (3) necessity for information to be tailored to the caregiver and person with dementia. This information was then combined with effective existing evidence-based behavioral strategies to create a web-based tailored caregiver-support tool. CONCLUSIONS: The WeCareAdvisor was designed with input on functionality and content by end-users, family caregivers. The randomized controlled trial of WeCareAdvisor will test whether the tool improves outcomes including caregiver upset and burden and frequency and severity of BPSD.