Brain Donation by Proxy: Are There Predictors in Neurodegenerative Dementia?

To describe the frequency and predictors of brain donation by relatives in patients with neurodegenerative dementia.

Database review and quantitative analysis.

The Alzheimer Center Reina Sofia Foundation (ACRSF), a center devoted to the care and research of patients with neurodegenerative dementia.

Patients with signed consent for participation in the ACRSF research program.

A set of 38 demographic, clinical, and social variables related to patient and closest relative, which were collected by the ACRSF multidisciplinary team upon patient admission.

Admission data were available for 198 patients who entered the ACRSF research program; 85 of them (42.9%) died during follow-up. Mean age (SD) at admission was 82.3 (6.8) years and 80.8% of the patients were female. Family link between patient and closest relative was spouse or partner (12.0%), son or daughter (74.9%), or other link (13.1%). Brain was obtained from 56 patients (65.9%). Consent by legal representative and patient's depressive symptoms were more frequent in the donors (p<0.05, corrected) and trend was observed for more aberrant motor symptoms in the donors (p<0.05, uncorrected).

A high rate of brain donation was achieved, probably due to the unique characteristics of the ACRSF and consent for research policy. Wish of alleviating suffering, as well as general interest in dementia research, possibly exerted an influence in brain donation. More research is needed to ascertain the values, motivations, and circumstances that may lead to brain donation by proxy in neurodegenerative dementia.