WeCareAdvisor™: The development of a caregiver-focused, web-based program to assess and manage behavioral and psychological symptoms of dementia

Abstract

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 in order to inform: 1) style of approach and “look and feel” of the tool, and 2) the types of psycho-education most needed by caregivers.

Results We conducted four focus groups and a technology survey (n=26) as well as additional individual semi-structured 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.