Health care utilization in frontotemporal lobar degeneration

The aim of this study was to find out how patients with frontotemporal lobar degeneration are cared for, to which extent family caregivers utilize professional support, and which medical treatment patients receive. Using a standardized interview, information was obtained from the caregivers of 124 patients with frontotemporal lobar degeneration on patient survival, sociodemographic characteristics, living arrangements, health care situation including formal and informal support, and pharmacological and nonpharmacological treatment. At the time of the interview, 72 patients were still alive, whereas 52 patients had already died before the interview. Fifty-seven percent of the patients lived at home. At the time of the interview/before death, respectively, 43% of the patients had been institutionalized into a nursing home on average 6.4 years after the onset of first symptoms. The mortality risk for patients who were admitted to a nursing home was 5 times higher than for those who were cared for at home. Fifty-one percent of the patients were treated with antidepressants, 23% with antipsychotics, and 34% with cholinesterase inhibitors or memantine. Forty percent of the patients received nonpharmacological treatment.