Unique Care Needs of People with Dementia and Their Caregivers during Transitions from Skilled Nursing Facilities to Home and Assisted Living: A Qualitative Study

Abstract

Objectives: The purpose of the study was to describe unique care needs of people with dementia (PWD) and their caregivers during transitions from skilled nursing facilities (SNF) to home.

Design: A qualitative study using focus groups, semistructured interviews, and descriptive qualitative analysis.

Setting and participants: The study was set in one state, in 4 SNFs where staff had experience using a standardized transitional care protocol. The sample included 22 SNF staff, 4 home health nurses, 10 older adults with dementia, and their 10 family caregivers of whom 39 participated in focus groups and/or interviews.

Methods: Data collection included 4 focus groups with SNF staff and semistructured interviews with home health nurses, SNF staff, PWD, and their family caregivers. Standardized focus group and interview guides were used to elicit participant perceptions of transitional care. We used the framework analytic approach to qualitative analysis. A steering committee participated in interpretation of findings.

Results: Participants described 4 unique care needs: (1) PWD and caregivers may not be ready to fully engage in dementia care planning while in the SNF, (2) caregivers are not prepared to manage dementia symptoms at home, (3) SNF staff have difficulty connecting PWD and caregivers to community supports, and (4) caregivers receive little support to address their own needs.

Conclusions and implications: Based on findings, recommendations are offered for adapting transitional care to address the needs of PWD and their caregivers. Further research is needed (1) to confirm these findings in larger, more diverse samples and (2) to adapt and test interventions to support successful community discharge of PWD and their caregivers.

Keywords: Dementia; caregivers; qualitative research; skilled nursing facilities; transitional care.