The impact of respite programming on caregiver resilience in dementia care: a qualitative examination of family caregiver perspectives.

Author(s): Roberts, E. and Struckmeyer, K.M.

Published In: Journal of Health Care Organization, Provision and Financing, 55: 1-11

Study Aim/Purpose: The three main study research questions were: (1) What was the determining factor in the transition to the role of family caregiver?; (2) In what ways do awareness of respite programming and actual utilization of respite impact resilience outcomes?; and (3) If the use of respite programming has impacted resilience for the caregiver, how has this translated to improved outcomes for the care recipient? 

Summary of Methods: This qualitative research was the second phase of a larger mixed-method study of family caregivers who were using or had in the past used some form of respite services (voucher programs, adult day care, overnight respite, support groups or counseling for the caregiver). A total of 33 individuals participated in a semi-structured interview that asked the caregiver’s perspective on: their needs, strengths and resources; emotional and physical functioning of the caregiving dyad; the caregiver’s ability to help meet the needs of the care recipient; and caregiver interactions and relationships with health care teams and/or long-term care systems. A qualitative thematic analysis of the transcripts was conducted by the 3-person research team to identify overarching themes and organize the findings for each theme. 

Summary of Results: Key themes identified from the research were as follows: 

1) Family dynamics play a major role in determining who takes on the caregiver role and that when taking on this role, most family members feel they should do it on their own without help, despite not knowing how to handle difficult situations that would come up; 

2) Caregivers go through financial struggles and finances and red tape pose barriers to secure respite services; 

3) Seeking out respite helped the caregivers’ resilience which they said in turn positively impacted the well-being of the care recipient; 

4) Support or counseling services helped reduce caregivers’ feeling of isolation; and 

5) Respite time helped caregivers better understand and gain acceptance of their caregiving role, which helped them address the frustrations of caregiving through strength and resilience. 

Study Limitations (as cited by authors): The authors emphasize that their research is exploratory with a small sample size. 

Authors’ Discussion/Conclusions: The authors intend to use the qualitative findings to develop a more rigorous multistate longitudinal study that can determine the relationships of each of the respite program types to caregiver resilience. They emphasized that research on dementia caregiving will be most useful to policy and programming and serving families more effectively if it can illuminate what is working and why, while also defining structural and institutional solutions for building and sustaining familial resilience.