Who provides care in the last year of life? A description of care networks of community-dwelling older adults in the Netherlands

BACKGROUND: Home-based care networks differ in size and composition, but little is known about the characteristics of care networks for those nearing the end of their lives. This study aimed to identify different types of home-based care networks of community-dwelling older adults in the Netherlands and to assess the association between care network type and the health status and socio-demographic characteristics of care recipients.

METHODS/DESIGN: We used data from participants of the Longitudinal Aging Study Amsterdam (2001-2013) with chronic diseases or functional limitations who died within 12 months of their last interview and received home based personal and/or household care (n = 146). Latent Class Analysis was used to model distinct end-of-life care networks among this pooled cross-section of older people whose characteristics imply care needs. The Akaike information criterion was used to determine the optimal model. Associations between network type and care recipient characteristics were explored using conditional inference trees.

RESULTS: We identified four types of care networks; a partner network (19%) in which care was mainly provided by partners, with little care from private caregivers or professionals, a mixed network (25%) in which care was provided by a combination of children, professionals and/or other family members, a private network (15%) in which only privately paid care was provided, and a professional network (40%) in which care was mainly provided by publicly paid professionals, sometimes with additional care from family or privately paid caregivers. Care networks near the end of life showed similar characteristics to those identified for older people more generally, but care seemed to be more intensive in the last year of life compared to the years preceding it. End-of-life care networks were mostly related to age, educational level and partner status. Formal care substitutes informal care whenever there is no partner or child present and able to provide care.

CONCLUSION: Our findings indicate that personal and household care can be quite intensive in the last year of life, especially for partner caregivers. To prevent caregiver burden, it is important that professionals make sure partner caregivers receive adequate and timely support to cope with the care situation.