'You become their advocate': The experiences of family carers as advocates for older people with dementia living in residential aged care

Abstract

Aims: The aim of this study was to identify features of well-performing residential aged care services (RACS) as experienced by family carers.

Background: Family carers can have an integral role in residential aged care providing social support and are well-placed to engage with staff and monitor care.

Design: A qualitative descriptive design was used. Semi-structured face-to-face and telephone interviews were conducted with family carers of current or past residents of Australian RACS between November 2018 and January 2019. Interview transcripts were analysed thematically.

Results: Rather than reporting features of well-performing RACS, participants shared stories of sub-standard care, dysfunctional management and poor resident-staff-family interactions. An overarching theme emerged of 'having to be an advocate' for residents' needs, which covered four major categories: organisational accountability (including transparency and individualised care), good communication, connection and trust. Combined, these constitute what carers perceive are the necessary conditions for determining the features of a well-performing RACS.

Conclusion: Family carers need to feel confident and trust RACS staff when they hand over the role of carer for their relative with dementia.

Relevance to clinical practice: This study provides insight into the needs and challenges of family carers when they relinquish the care of an older relative with dementia. Strategies to build confidence and trust between RACS and family carers are essential. Aged care nurses can play a pivotal role to support this through the development of open communication and relational connections with residents and their families.

Keywords: aged care; dementia; experiences; families; interviews; long-term care; nursing homes; older people.