Characteristics of individuals with Huntington disease in long-term care

This is a retrospective review of 97 Huntington disease (HD) patients living in long-term care facilities in the Twin Cities. The purpose of the study was to describe the demographic features, patterns of behavior, weight change, nursing issues, medication use, and hospitalization in this population. On admission to the nursing home, the "average" HD patient was of either sex, 45 years old, previously employed, a high school graduate, and not married. One third had severe behavior problems. Half gained and half lost weight; weight loss was not a predictor of death. Almost all used central nervous system-active drugs, most commonly neuroleptics. Eighty-four percent were ambulatory on admission, but 88% of those who died were nonambulatory at the time of death. We concluded that (a) HD patients are demographically different from other residents of long-term care facilities, (b) weight gain can occur in some late-stage patients, (c) negative behavior is a significant problem but is restricted to a subset of patients, and (d) adapting creatively to increasing multifaceted disability is the greatest challenge to the staff in facilities caring for HD patients.