Caregiver perceptions associated with risk of nursing home admission for people with multiple sclerosis

About one quarter of people with multiple sclerosis (MS) will need long term care during their disease, with about 5% to 10% requiring extended nursing home care. The study objective was to identify perceptions of informal caregivers associated with the possibility of future nursing home admission for people with MS.

Data were collected in a national survey of informal caregivers (78% were spouses) to people with MS. An ordered logistic regression model analyzed contributions that characteristics of the person with MS and caregiver made to the perceived probability of future nursing home admission.

Aging, bowel dysfunction, poorer health, and functional decline in the person with MS, as well as caregiver burden, were associated with increased probability of future admission. Higher family income and greater satisfaction with access to MS-focused care were associated with lower risk of nursing home admission.

The rehabilitative, therapeutic, supportive, and maintenance services that contribute to MS-focused care could assist the person with MS and the caregiver adapt to the symptoms that interfere with the ability of the person with MS to function independently in daily life. Informal caregivers provided insights into factors associated with the perceived probability of future nursing home admission, gaining a better understanding of people with MS at risk for institutional care.