Family caregivers’ experiences of relinquishing the care of a person with dementia to a nursing home: insights from a meta‐ethnographic study

Abstract

Many people with dementia are cared for in their homes by family caregivers. As the dementia progresses, admission of the family member to a nursing home becomes inevitable. The aim of this meta-ethnographic study was to describe caregivers' experiences of relinquishing the care of a family member with dementia to a nursing home. A systematic literature search of PubMed, Cinahl and PsychInfo, between the years 1992 and 2012, was performed, and 10 qualitative articles, based on 180 family caregivers' experiences, were included. The family caregivers' described their experiences as a process that went from being responsible for the decision, through living with the decision, adjusting to a new caring role and having changed relationships. They felt unprepared and lonely with these changes. They experienced loss, guilt and shame, but also feelings of relief. Their roles in the nursing home environment were to make sure that the individual needs of the person with dementia were respected and to monitor the quality of care. They wished to maintain their relationship with the person with dementia and to establish meaningful relationships with caring staff. The process of relinquishing care is similar to a crisis process, which starts with a turning point, followed by a coping face and finally the outcome of the process. The adaption to the new situation can be facilitated if the family caregivers are recognised as partners in the care of the person with dementia. The family caregivers' unique knowledge of their relatives' previous life story should be acknowledged in both care planning and daily care. Welcoming family caregivers to regular meetings with staff can contribute to increase the feeling of partnership. Offering staff clinical supervision could be one way of preparing them to deal with the emotional strain reported by family caregivers.

Continuity of home-based care for persons with dementia from formal and family caregivers’ perspective

“…This finding supports studies of family burdens in general (Graneheim et al, 2014) and family burdens caused by workloads to compensate for discontinuity (cf. Bastawrous, 2013).…”

Extra care: viable for couples living with dementia?

“…This process was reported to be accompanied by feelings of guilt, loss and shame (Graneheim et al, 2014). Such findings are reinforced by research investigating why couples living with dementia remain together (Loboprabhu et al, 2005;Davies, 2011).…”

“…Care partners have reported feeling guilty and struggling to adapt with their new lives post seeking care home placements for people with dementia that they have cared for (Garity, 2006;Graneheim et al, 2014 (Graneheim et al, 2014). Such findings are reinforced by research investigating why couples living with dementia remain together (Loboprabhu et al, 2005;Davies, 2011).…”

“…Carers who had to make the decision to place their partner into permanent nursing care disclosed the guilt and anxiety they felt and the pain of having to be apart from their partner: Care partners have reported feeling guilty and struggling to adapt with their new lives post seeking care home placements for people with dementia that they have cared for (Garity, 2006;Graneheim et al, 2014 new role and getting used to their new relationship with their loved one. This process was reported to be accompanied by feelings of guilt, loss and shame (Graneheim et al, 2014).…”

Why are relatives of care home residents reluctant to “rock the boat”? Is there a culture of acceptance?

“…She found that relatives seemed to accept the inevitability of shortcomings in the home. Graneheim et al (2014) also found that family members would make excuses when they experienced poor quality care, often blaming poor education or lack of staff, or putting it down to an isolated incident. Many people see moving into a care home as a last resort and have negative perceptions of care homes, either based on personal experience or media portrayal (Davies and Nolan, 2003).…”