Needs of informal caregivers during transition from home towards institutional care in dementia: a systematic review of qualitative studies

Background: Alongside providing care, informal caregivers of people with dementia often need support and guidance themselves, especially during difficult periods such as the care-transition from home towards a nursing home. Knowledge on needs of informal caregivers during this period is sparse. This study aims to provide insight into problems and needs of informal caregivers caring for people with dementia during care-transition from home-based care to institutional long-term care. Methods: A systematic electronic search in CINAHL, Cochrane, Medline, PsycINFO, Pubmed and Web of Knowledge. All qualitative articles up to September 2013 were considered. The included articles underwent a quality appraisal. Thematic analysis was used to analyze problems and needs described in the articles. Results: Thirteen publications were included providing 14 topics comprising needs and problems of informal caregivers during the care-transition period. The most stated topics were: emotional concerns (e.g. grief and shame about the decision), knowledge/information (e.g. understanding the care system) and support (e.g. need for counseling). Similar topics were found prior and after admission, with examples specific to the either the home or nursing home situation. Conclusions: The care-transition period should be considered a continuum, as similar needs and problems were identified prior and after admission. This should be kept in mind in developing support and guidance for informal caregivers during this process. Whereas currently the situation prior and post admission are seen and treated as adjacent stages, they should be considered one integrated stage. Multicomponent programmes should be offered that are designed in a continuous way, starting prior to admission, and continuing after.