Literature review: Use of respite by carers of people with dementia

Study Aim/Purpose: The review summarizes research findings on factors affecting respite use and outcomes for carers of people with dementia living in the community. 

Summary of Methods: The authors conducted a search of English language articles from Australasia, the United States, Canada, United Kingdom, and Europe primarily using EBSCOhost via CIAHL, MEDLINE, and PsycINFO databases with search terms including Alzheimer’s disease, dementia, respite, adult day care, carer and caregiver. The main time period covered was 1990-2012, but a few earlier articles were also included. The search included a wide range of study designs with “all levels of evidence,” including literature reviews/meta-analyses, randomized control trials, quasi-experimental studies, descriptive studies (observational or quantitative surveys), qualitative research, and expert opinion publications. 

Summary of Key Results (related to studies of effectiveness): Reviewed studies demonstrated that lack of knowledge of the availability of respite is a major contributor to its poor usage. The literature suggests the following additional factors affecting respite use: the carer’s perception of need for respite; whether the caregiver felt duty bound to providing care; whether respite was perceived as able to help the person with dementia; family or societal stigma against use of respite; concerns about quality of care; and the accessibility of suitable or dementia-specific respite services. Reviewed qualitative studies suggested that spouses may feel a greater sense of duty than other family caregivers and so may tend to be more reluctant to use respite. 

The review found conflicting evidence regarding significant effects of respite on carer physical or mental health, anger and depression, stress, burden (beyond the short term period when respite is being used), and general quality of life. The studies analyzed also demonstrated limited if any consistent positive or adverse effects of respite use on the health of persons with dementia (e.g., on their cognition, function or physical health) or on delaying their placement in a residential facility. Studies also indicated that that outcomes of respite care for any individual caregiver are affected by his/her satisfaction with the care, and how the carer spends his/her respite time is an important variable impacting their satisfaction. 

Limitations of Studies Reviewed (as cited by the author): The authors suggest that using the word ‘respite’ in their literature search may have resulted in missing some important articles that evaluated respite-like services, but did not use the term. 

Authors’ Discussion/Conclusions: The authors conclude by suggesting future research on respite include a sufficiently large and diverse sample size to enable the exploration of the factors affecting respite use, carers’ satisfaction or dissatisfaction with the service, its impact on carers and care recipients as well as the influence of diverse background characteristics and external factors on these impacts.