Findings from a statewide program of respite care: a comparison of service users, stoppers, and nonusers

This study compared respite users with stoppers and nonusers in the Health Resources and Services Administration-funded Alzheimer's disease demonstration grant in the State of Maryland. Of those accepted into the program, only 54% participated for at least 6 months. The primary reasons for stopping were the death or institutionalization of the relative, while those not using respite services felt they didn't really need them. Determinants of program use included the poorer cognitive status of the relative and less anxiety and greater burden among the caregivers. After 6 months, users reported fewer hours of informal assistance, less burden, and that the relative had fewer behavioral problems although cognitive status and activities of daily living (ADLs) had deteriorated.