Objectives: to describe the profile of patients with advanced stage neuro­degenerative diseases in a home care team. To analyse the primary health problems and to determine the place of death.
Material and methods: cross-sectional descriptive study of patients seen in a Home Care Support Team (HCST) of Area 5 of Madrid, in the time period between 2001 and 2008. The following variables were analysed: age, sex, diagnosis of neurological disease, origin of the referral, follow-up days, number of visits, social aspects, Barthel’s index, number of drugs, detected problems and place of death.
Results: a total of 2.738 patients were evaluated. 25 (0,91%) were included for presenting an advanced NDD. Mean age was 62,2% years, and 60% were women. 64% were diagnosed with amyotrophic lateral sclerosis. The follow-up was estimated to be 98,2 days per patient with a mean of 8,7 visits. On the first visit patients’ Barthel index was 22,4, the spouse being the primary caregiver. By the end of the study, 22 patients had died, the home being the place of preference for exitus (72,7%). The most frequent problems during follow-up were dysphagia (92%) and dyspnoea (76%).
Conclusions: the profile of the patient with NDD is a middle-aged woman with severe functional deterioration whose main caregiver is her spouse. The main problems detected were dysphagia and dyspnoea. Approximately three of every four patients passed away in their home.