UCSF

Community-dwelling older persons with dementia (PWD) rely on informal, unpaid caregivers (CGs) and formal, paid services and resources in order to age-in-place in the home. Informal support includes families, neighbors, community members, and social support. Formal services and support include home-and-community-based resources, home health, and hospice services. Additional and updated information on informal and formal sources of care is needed in order to first, provide high-quality dementia and end-of-life care for community-dwelling PWD and second, delay the time of moving out of the home and into an institution.

We used the National Health and Aging Trends Study (NHATS), a nationally representative survey, to estimate the risk of transition out of the home and into an institution with sources of social support as our primary predictors. We used NHATS data linked to Medicare claims to specifically examine home health and hospice service use in the last-year-of- life for community-dwelling PWD who died at home. Finally, we reviewed the characteristics of seven care coordination programs for PWD in order to determine the program’s core components and facilitators and barriers to delivering collaborative dementia care that support the PWD and their informal CG.

The findings of this dissertation research have the ability to provide insight into the life of community-dwelling PWD prior to moving out of the home and into an institution and prior to death at home. Above all, the findings from this research will support community-dwelling PWD to age-in-place by assuring their social support and formal care needs are addressed and met.