ABSTRACT
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.
Subject(s)
Delivery of Health Care/statistics & numerical data , Frontotemporal Lobar Degeneration/nursing , Home Nursing/statistics & numerical data , Homes for the Aged , Nursing Homes , Aged , Aged, 80 and over , Caregivers , Female , Frontotemporal Lobar Degeneration/mortality , Humans , Male , Middle AgedABSTRACT
BACKGROUND: The present study aimed at analysing survival of patients with behavioural-variant frontotemporal dementia (bvFTD), semantic dementia (SD) and progressive non-fluent aphasia (PNFA). Furthermore, the objective of the study was to identify prognostic factors associated with survival and to examine causes of death. METHODS: Interviews were performed with the proxies of 124 patients with frontotemporal lobar degeneration (FTLD). RESULTS: Survival from the onset of first symptoms was significantly longer in SD than in bvFTD (10.5 years). Median survival in PNFA was 12.6 years. Age at onset, gender, education and severity of dementia at diagnosis did not significantly influence survival. We did not identify any phenocopy cases. The most frequent cause of death as reported by caregivers was respiratory system disorder. CONCLUSION: This study adds to the growing literature on survival in patients with FTLD and provides insights into the causes of death.
