Factors influencing decisions about donation of the brain for research purposes

Objectives: to find out the attitudes to brain donation for research purposes and factors involved in decisionmaking in elderly people. Design: questionnaire administered after the decision had been made. Setting and subjects: 200 of the 640 people in Nottingham aged 67 - 100 who were assessed as part of the Medical Research Council multicentre Cognitive Function and Ageing Study of 2518 people over 65 and were approached to consider brain donation for the neuropathology component of the study of dementia incidence. Results: Most people completing the questionnaire had positive or neutral feelings about being approached. Positive influences included: personal approach, awareness of need for research and of suffering caused by dementia and a desire to help others. Many had fears about not being really dead, about post mortem examinations and feeling pain after death. Most preferred cremation and these were much more likely to donate. Two-thirds thought death was not talked about enough: 65% of those visited found talking helpful. Relatives had an important influence, usually dissuading the person from donating. Conclusions: some families who agreed to a relative's decision to donate only did so after discussing it together well in advance of death would have been unlikely to have agreed had they been approached for the first time only after death. There is a need to: (i) talk more about death, addressing people's fears, (ii) increase awareness of the need for autopsies and donation for research and (iii) provide more training in talking about death and autopsies.