Family caregivers can share their experiences and unique knowledge of relatives’ lives to improve care for people with dementia transitioning to a nursing home

Graneheim UH, Johansson A, Lindgren BM. Family caregivers' experiences of relinquishing the care of a person with dementia to a nursing home: Insights from a meta-ethnographic study Scand J Caring Sci. 2013 April 12. [Epub ahead of print]

Review question

What are family caregivers’ experiences of relinquishing the care of a person with dementia to a nursing home?

Background

Many people with dementia are cared for in their homes by family.

As the disease progresses, it can become necessary to admit the family member to a nursing home.

Caregivers struggle with this decision, which involves a range of factors, including the progression of dementia, the family caregivers’ health and family dynamics.

The decision is also influenced by interactions between caregivers and the health system, with positive experiences often helping ease the transition to nursing home placement.

How the review was done

The review examined research studies describing family caregivers’ experiences with relinquishing care.

10 eligible studies were identified from the literature published between 1992 and 2012.

The experiences of 180 family caregivers from 6 countries were included in the analysis.

No funding was obtained from other sources for this review.

What the researchers found

Family caregivers go through a process of feeling responsible for their decisions, living with the decision, adjusting to a new care role, and changed relationships.

Caregivers often feel unprepared for and lonely as a result of these changes, and experience feelings of loss, guilt, shame and relief.

Family caregivers often stay involved by ensuring the needs of the person with dementia are respected, and by monitoring the quality of care.

In addition to maintaining relationships with the person with dementia, family caregivers often also establish meaningful relationships with staff providing care.

The process of relinquishing care was found to be similar to a crisis process, starting with a turning point, followed by coping and then the outcome of the process.

One way that family caregivers can adapt to the new situation is by ensuring that they are recognized as partners in the care of the person with dementia.

Family caregivers who engage with staff who are clinically supervised may be better supported to deal with emotional strain.

Conclusion

Family caregivers should share their unique knowledge of their relative’s previous life story with the health care professionals responsible for care planning and daily care.

Family caregivers can feel more like a partner by regularly attending meetings with care staff.

This review was determined to be of medium methodological quality based on an assessment using the AMSTAR tool.