Respite care--an explorative study of demand and use in Dutch informal caregivers

Recently, there has been increasing concern for the well-being of informal caregivers. Attention is directed at the development of respite care programs that provide support and relief by (temporarily) easing the burden for the caregiver. Yet, little is known about caregivers' needs, desires and use of respite care facilities. A survey was conducted among a population of informal caregivers, to investigate demand for and use of the four most common types of respite care, namely in-home respite care, day-care, short-stay and special holiday arrangements. The 273 caregivers that participated in this study were reasonably well informed about existing services, especially out-of-home services; least informed was a subgroup that needs but currently does not make use of respite. About one-third of caregivers made use of respite care. These caregivers experienced substantial burden and expected burden (60.7 on a 0-100 scale) to increase substantially in case respite care would no longer be available (+31 on a 0-100 scale). Caregivers and care recipients were generally satisfied with the respite care they receive. About half of the non-users indicated to need or desire respite care, in general those non-users experiencing a relatively high burden. The main impeding factor for use of respite care was care recipient resistance against respite (38%). A majority of carers (62%) anticipated that respite care could substantially decrease their subjective burden (-29 on a 0-100 scale). Mostly respite care facilities reach the caregivers most in need of support, but not all caregivers in need make use of respite. Improvements are possible in terms of information provision and focus on combined caregiver-care recipient needs and desires. More research is needed into the (cost-)effectiveness of respite care.