DESIGNING DEMENTIA DECISION AIDS: HOW DO WE MEET THE DIFFERING NEEDS OF PATIENTS, CAREGIVERS, AND CARE PROVIDERS?

Purpose:

   This survey assessed the needs and preferences of people with Alzheimer’s disease, their family caregivers, and dementia care providers for evidence-based interventions to support decision making across the mild, moderate, and advanced stages of disease.

Methods:

   Based on the Population Needs Assessment Process, we administered a questionnaire with 10- to 15-items tailored for people with early stage dementia, family caregivers (current and bereaved), and dementia care providers (hospital- and community-based). This questionnaire assessed: 1) which decisions are most difficult at each stage, 2) which decisions would benefit most from decision support interventions, 3) awareness of existing patients’ decision aids, 4) what medium is most preferred for decision support interventions, and 5) what types of decision support resources are most needed. An open response area requested additional suggestions for helping dementia families make well-informed health care decisions. Data analysis involved tabulating the distributions of quantitative responses and content analysis of qualitative responses to identify themes, convergence, and divergence across sample subgroups.

Results:

   The 220 respondents included 14 people with early dementia, 44 family caregivers, 15 MDs, 45 RN/LPNs, 37 MSWs, 28 long-term care providers, 10 Alzheimer’s Association representatives, and 17 community service providers, who were primarily female (72%) and Caucasian (98%). Patients and caregivers rated decisions about screening and home/residential long-term care options as most difficult, while providers rated decisions about end-of-life therapies as most difficult. Notably, patients rated fewer decisions overall as “Difficult/Very Difficult” (10-43%) than caregivers (56-89%) or care providers (72-89%).  Respondents requested specific support regarding driving laws, family conflict, and dis/continuing preventive care.  53% of providers were not aware of existing dementia decision aids. Patients preferred brochures, videos, and worksheets available at the clinic, while caregivers preferred worksheets and websites that could be completed at home or at the senior center. Patients and family caregivers requested tools that could compare options side-by-side, provide examples of how other families made “good” decisions, and interactively create a personal summary for discussion with their clinicians and estate planners.  

Conclusion:

   The observed differences in patients’, family caregivers’, and care providers’ decision support needs suggest that multifaceted, interactive, and tailored interventions are needed to support multiple decision makers across multiple decisions, multiple transitions, multiple locations, and multiple goals of care.