The desire for support and respite care: preferences of Dutch informal caregivers

Informal care is an indispensable element in the care for many patients. In order to maintain a sustainable input of informal care, it seems important to identify measures to alleviate the burden of care giving for caregivers at risk of burn out or other serious health problems, such as support and respite care. Thus, far research has focused on the burden of caregiving and on the supply of respite care. The demand side: what type of care is preferred by informal caregivers and what determines their preferences, is virtually unknown. We analysed the preferences and the underlying determinants for several types of support and respite care in a sample of 950 Dutch informal caregivers. Almost 80% of the respondents desire support or respite care in general, 42-47% would prefer more communication with other informal caregivers or more information of professional caregivers. Some time off is preferred by 40% of the respondents. The results show that caregiver characteristics, care recipient characteristics, elements of the caregiving situation and institutional variables determine the desire for support and respite care. Especially, the subjective burden of caregiving is important, whereas the number of caregiving tasks and the time invested (objective burden) hardly affect the desire for support and respite care.