Brains for dementia research

Assessment

For people who have a memory impairment, assessment will take place every year at one of our centres, or by telephone, by a trained nurse or psychologist. The questionnaire and interview based assessments build a profile of how the brain is functioning over time. To help us do this it is also useful for us to ask a carer or next of kin some questions.

For potential donors without a memory impairment the assessments will be similar but will be conducted every 2 years.

Assessments are not invasive, do not involve 'procedures' and will be conducted in such a way as to minimise disruption to participants.

Participation is entirely voluntary and should potential donors or their carers (where applicable) feel it inappropriate to continue with an assessment their wishes will be respected.

Brain donation

Potential donors with a memory impairment (and those with no diagnosis of memory impairment) are asked, in discussion with their Next of Kin, to complete a form consenting to memory testing during life, and intention to donate brain (and spinal cord, if applicable) after death. Donation involves a limited post mortem to allow removal of the brain, retention and use of the tissue in dementia research as approved by the governing committee of the Brain Bank holding the tissue.

After death the Brain Bank arranges for the body to be temporarily transferred from the funeral directors to the hospital mortuary for removal of the brain. Donation does not result in visible disfigurement, does not interfere with funeral arrangements, neither does it involve the next of kin in additional expense.

Participation in the initiative is entirely voluntary and participants may withdraw at any time without giving a reason.

Brains for Dementia Research is very appreciative of the commitment to help research into dementias made by the potential donors and their carers. The Brains for Dementia Research nurses will continue to support potential donors and carers even when no meaningful testing can take place.

We are mindful of the fact that tissue donation happens at a distressing time for the family.