BACKGROUND: There are several ethical aspects related to the medical assistance of patients with Alzheimer's disease (AD) including diagnostic disclosure to the patient, performance of autopsy for diagnostic confirmation, and also topics pertaining to the caregivers constantly subjected by these patients to physical and mental stress. This work investigates some of these issues, by comparing family caregivers of patients with AD followed-up at both public and private health services. METHODS: Twenty family caregivers of AD patients followed up at a public university hospital and 20 family caregivers of AD patients followed up at a private clinic were interviewed using a specific questionnaire comprised of 36 questions about diagnosis, treatment and prognosis of the disease. RESULTS: The two groups presented similar age and gender distributions while the socioeconomic level was higher for the private clinic group. No differences were found between opinions of both groups regarding diagnostic disclosure to the patients, with 42.5% of the total in favor of disclosing the information only to the family. The number of caregivers who agreed with performance of autopsy was significantly higher in the public service (35% against 30% in the private clinic). Twenty caregivers (50% of the total sample) spontaneously manifested the wish to allow an autopsy for research purposes. CONCLUSION: Disclosure of AD diagnosis to patients was approved by more than half of all family caregivers and these rates were not correlated to the socioeconomic level. This variable, however, influenced the concordance rate related to the post-mortem neuropathological examination.
Dementia; Alzheimer disease; Bioethical issues; Caregivers; Autopsy
