Background

Family caregivers may experience difficulty maintaining meaningful contact with a relative with advanced dementia. Nevertheless, some family caregivers prefer to remain involved in the care of their relative after admission to a nursing home. Family involvement in the care is important but little is known about how this works in practice and what exactly is needed to improve it.

Objectives

To examine experiences of family caregivers, staff and volunteers with family caregiver participation in the Namaste Care Family program, a psychosocial intervention to increase quality of life for people with advanced dementia that may help family caregivers to connect with their relative. Further, we aimed to examine facilitators of and barriers to family participation.

Design

Descriptive exploratory qualitative design using semi-structured interviews.

Setting

Ten nursing homes in the Netherlands.

Participants

Ten family caregivers, 31 staff members and 2 volunteers who participated in the Namaste Care Family Program.

Methods

Qualitative interview study using thematic analysis. Interviews were held with family caregivers, staff members, and volunteers about their experiences with the Namaste Care Family program.

Results

In general, family caregivers experienced their involvement in the Namaste Care Family program as positive, particularly the meaningful connections with their relative. However, putting family involvement into practice was challenging. We identified three themes covering facilitators for and barriers to participation: (1) Preferences of family caregivers for activities with their relative (Activities): practical activities matching one’s own interests were seen as facilitating, while perceived lack of knowledge and reluctance to engage with other residents were barriers. (2) Communication between family caregivers, staff and volunteers (Communication): providing clear information about the program to family caregivers facilitated their involvement. Feeling insecure inhibited family involvement. (3) Personal context of family caregivers (Personal circumstances): feeling fulfillment and being appreciated facilitated involvement. Older age, having a family of their own, a job and complex family relations were barriers to family caregiver involvement.

Conclusion

To optimize family involvement, it is important to adopt a family-centered approach and provide training and guidance. Making a personal, comprehensive plan with family caregivers and offering them guidance can help them overcome their uncertainty and remove barriers to being more involved with a care program aiming to improve the quality of life of their relative. Also recommended is training for staff to improve communication with family caregivers. The Namaste study is registered with the Netherlands Trial Register (NTR5692).

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