Are alternative long-term-care programs needed for adults with chronic progressive disability?

Long-term care planning for middle-aged adults with progressive neurological impairment is a largely unexplored area. The purpose of this study was to examine factors that place individuals with progressive disability at risk for institutional placement and identify whether innovative long-term care preferences would be used if available. The sample of 102 clients with a diagnosis of multiple sclerosis (N = 92) or other progressive illnesses (N = 10) was mostly female, married and Caucasian, with an average age of 48 years. The social support network of family and friends was small; most tangible aid was provided by family members. Seventy percent of the participants used community services, the most common being a home-health aide (44%) and professional nursing services (21%). Medicaid insurance, severity of functional disability and lack of social support were associated with greater use of community services. Participants could foresee using long-term care alternatives such as a community residence (65%), adult day healthcare (63%) and family respite (46%), although these services were regarded with some ambivalence. With their knowledge of community resources, nurses are in a key position to make early assessments of clients' present and future care needs and to suggest needed modifications in living arrangements to avoid premature institutionalization.