End-of-life care for persons with advanced Alzheimer disease: Design and baseline data from the ALFINE study

CONTEXT: Alzheimer disease (AD) is the most common cause of dementia. Most affected individuals survive to an advanced stage of dementia, which is under-recognized as a terminal illness. OBJECTIVES: Our objectives were to better understand the clinical trajectory of advanced AD and to identify the palliative care needs of these patients. METHODS: This was an observational prospective study of AD patients in severe stage of disease included after a hospitalization in geriatric wards. They were followed up every three months during 2 years. At each visit, interviews provided data regarding: pain (Elderly Pain Caring Assessment scale), pressure ulcers, eating patterns, daily medications and use of health services. This paper describes the design of the ALFINE study and the characteristics of the recruited cohort. RESULTS: 112 patients were recruited (mean age: 84.03 + 6.96) years; 76.79% were women. Mean time since diagnosis of AD was 5.28 years. Pressure ulcers were observed in 42 patients. Pain assessment with the EPCA showed a mean score of 8.58. One third of patients with an EPCA score of more than 7 (median) had no analgesics. More than half of patients had been treated with antibiotics during the three months before inclusion in the study and 33 patients were still receiving antibiotics at inclusion. Two third of patients had been hospitalized in the month before inclusion. CONCLUSION: End-of-life care for individuals with end-stage AD is increasingly important because of the rising number of patients with this disease. Health care systems and clinicians should make efforts to ameliorate the suffering of patients and their caregivers.