Miller, Joel K

AbstractBackgroundCaregiving for persons with dementia negatively impacts physical and mental health, including increased risk for chronic loneliness and isolation. This Phase I study aimed to recruit former and current dementia caregivers as engaged partners in the design of a unique, technology‐assisted pairing platform to match caregivers to one another for meaningful connection and support based on characteristics chosen by the caregivers themselves.MethodWe recruited thirty‐two caregivers to participate in two semi‐structured focus groups (audio recorded for qualitative analyses) and complete a survey to understand the characteristics desired in another caregiver for the purpose of emotional support. Participants interacted with a website prototype on their personal device and completed a user experience feedback form. An iterative process was used to design the website and matching questionnaire allowing participants to validate preferences and concerns. Website analytics were captured (e.g. time to answer each question, total time spent on the website).ResultThe efforts culminated in a website ‘look and feel’ that addressed the preferences and criticisms of study participants. Figure 1 shows the home page slider inviting caregivers to join (images 1‐3) and describes the matching process (4); the caregiver answers up to 34 questions to create a profile (5‐7) and the website provides a list of caregivers that best match criteria (8). Overall, 87% of study participants rated a high level of comfort with completing the personal profile questions; 82% felt confident the questions asked would lead to a good match. An algorithm to match caregivers was created using the profile questions which asked participants to self‐select and then rank the characteristics of highest importance. Good and poor matches are scored by the algorithm, with 1 being a “perfect” match (Figure 2). In the current cohort, each participant had at least one match that scored 0.708 or higher.ConclusionOur study established interest in a technology assisted peer‐to‐peer caregiver matching program that is a potential low‐cost, high‐impact resource. The study resulted in a set of matching characteristics and an algorithm prototype within a user influenced website and will be further tested in Phase 2. Research supported from NIA of the NIH.

AbstractBackgroundBlack/African Americans (B/AA) are nearly twice as likely as White/European Americans (W/EA) to have Alzheimer’s or other dementias and are more likely to provide care for persons with dementia (PwD). Evidence indicates that B/AA desire having someone to talk with who understands their caregiving challenges, yet are less likely than W/EA to ask for support. Further, community resources supporting caregivers’ ability to maintain health and well‐being developed with input from B/AA are lacking. We aimed to determine how a technology‐assisted caregiver matching service designed with user input could address diverse caregiver needs.MethodsFor this Phase I project, 32 caregivers of PwD (31% B/AA) participated in semi‐structured focus groups and completed surveys to provide input regarding characteristics deemed valuable in someone they would choose to be connected with for emotional support. Through an iterative process as new information emerged, a web‐based prototype and matching algorithm were developed.ResultsAge and sex distribution were similar between B/AA and W/EA (71 and 68 yrs; 90% and 86%, respectively). W/EA were most likely caring for a spouse/significant other (73%) whereas B/AA were caring for spouse/significant other (30%), a parent (30%;18% W/EA), a sibling (10%; 0% W/EA), or other (30%; 9%W/EA). Level of emotional support was rated “poor” (50% B/AA, 18% W/EA); “average” (0% B/AA, 14% W/EA); “good” (40% B/AA, 41% W/EA); and “excellent” (10%, 27% W/EA). Characteristics B/AA deemed “very important” or “absolutely essential” for a supportive match included living in close proximity, same ethnicity, similar lifestyle, and common values. Alternatively, W/EA selected similar age, living in close proximity, same sex, similar lifestyle, common values and interests, having the same caregiving relationship, and having the same diagnosis in their PwD (see chart).ConclusionIn this cohort, B/AA reported poorer levels of emotional support than W/EA. B/AA were equally likely to be supporting a spouse/significant other as a parent or other acquaintance, whereas W/EA provided support primarily for a spouse/significant other. Characteristics B/AA and W/EA consider important in a supportive caregiver match show important differences that should be considered when optimizing caregiving resources. Phase II will explore further in a much larger sample.