Utility of respite services can improve with better tailoring to caregiver needs

Phillipson L, Jones S, Magee C. A review of the factors associated with the non-use of respite services by carers of people with dementia: Implications for policy and practice Health & Social Care in the Community. 2014; 22(1): 1-12.

Review question

•      What factors are associated with non‐use of different types of respite services by caregivers of people with dementia?

Background

•      Formal services in the community can assist informal caregivers (for example, family or friends) to support people with dementia. This can be achieved through directly decreasing caregiving hours or by giving caregivers a break or “respite.”

•      Previous research has shown that using respite programs can help caregivers of people with dementia continue in their caring situation for longer.

•      Delaying institutionalization for older adults may avoid negative outcomes such as increased confusion and mortality risk. Despite this, the use of respite services by caregivers of people with dementia is currently low and does not seem to match caregivers’ needs.

•      This review aims to identify factors associated with non‐use of different types of respite services by caregivers of people with dementia.

How the review was done

•      Review authors conducted a detailed search of eight research databases for all English-language articles published from 1990 to August 2011.

•      Search terms included various combinations of key words including dementia, Alzheimer’s, service, respite care, day care, aged care home, and nursing home.

•      405 articles were retrieved from the initial search, of which 14 were included in this review.

•      The lead author of this review was supported by a bursary from the NSW/ACT Dementia Training and Study Centre. No conflicts of interest were declared.

What the researchers found

•      Reviewers found that predisposing variables that may be associated with the health and social service use behaviours of caregivers include: demographic variables, factors relating to social structure (for ezample ethnicity or education), and health beliefs (e.g. beliefs about dementia).

•      The relationship between the caregiver and the care recipient was found to be a factor that may contribute to service use decisions. Being a spousal caregiver was associated with various types of caregiver assistance.

•      Caregiver gender and age were also variables associated with service non‐use. For specialist in‐home services, being a female caregiver was associated with service non‐use. For non‐specialist in‐home services, caregivers aged over 70 years were more prone to non‐use.

•      The influence of beliefs about dementia were only explored in two studies. Caregivers’ ‘embarrassment to be in public with the care recipient with dementia’ and ‘concern regarding having guests in the home’ were associated with use of in‐home services, but not with day centre service use.

•      With regards to personal factors, non‐use of day care was associated with caregivers not knowing where to find services.

•      Findings regarding the impact of care recipients' behavioural problems were mixed. Although a high frequency of care recipient behavioural problems were associated with both use and non‐use of respite services, it was not significant in determining service use behaviours overall.

Conclusion

•      This review highlighted the potential benefits of designing respite services in a way that supports caregivers who may be more prone to not utilizing these tools. The review also reinforces the importance of matching services to the needs of individual caregivers and care recipients.

•      The review also illuminates the need for increased development of community-level strategies to address significant attitudinal barriers that may predispose caregivers to service non‐use. Similarly, there is a need to develop programs that target specific caregiver sub‐groups who have greater difficulty accessing services.