Who can take part
Brains for Dementia Research gives people diagnosed with a memory impairment (or dementia) in England and Wales the opportunity for interviews to monitor brain function during life prior to brain donation. People over the age of 65 who do not have a memory impairment are also particularly welcome, as normal brain tissue is in extremely short supply. There is no upper age limit.
It is possible for someone to take part even when they cannot themselves give consent. Agreement to take part can be given by a person in a qualifying relationship, taking into account the potential participant’s past and present wishes and feelings, beliefs and values. The assessments are a key part of Brains for Dementia Research so we would not usually register people who are at the final stages of their illness.
We are pleased to say that many people have responded to the appeal for volunteers, and some sites are now full or close to full. If you are interested please do enquire, if we cannot register you we may be able to suggest alternative ways to help dementia research through brain donation.
First we find out a bit more about you, your background and medical history. The informal, interview-style assessments are standard questionnaires that look at memory, thinking, behaviour and daily living activity. Assessments normally take place at home, or at one of our centres, at one to five yearly intervals depending on age and diagnosis. For those with no memory impairment we may do some assessments over the telephone.
There are also some questions for someone who knows you well, and this can be a friend or neighbour (or carer, if applicable). This person does not need to be a family member as we appreciate family may not always live close by. Everybody is asked the same set of questions. We aim to minimise inconvenience to participants and appreciate it may not be possible to complete every assessment.
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 (and spinal cord if that is part of the donation). This process does not interfere with funeral arrangements, nor does it involve the family in additional expense. The Brain Bank will take care of the formalities and practicalities, and will minimise additional stress for the family.
The brain and spinal cord tissue is retained and stored within a Brain Bank and the tissue distributed for use in research projects that have been approved by Brains for Dementia Research and the management committee of the Brain Bank holding the tissue.
Talking to family
We recognise that this is not an easy thing to consider and discuss within the family, and appreciate the effort you are making for dementia research by doing so. However, experience tells us it is better for family members to be aware of your wishes, so they know what to do. Family knowledge of your wishes helps ensure those providing your end of life care know, have a copy of the consent form, and can inform the brain bank immediately when the time comes.
To take part, find out more information or ask about suitability to take part, please email firstname.lastname@example.org, telephone (020 7848 8377) or write (Dr Helen Costello, Brains for Dementia Research, WCARD, King’s College London, St Thomas Street, London SE1 1UL). Some centres are becoming full but we can signpost to alternatives if it is not possible to register with the project.
If you are contacting us about a person with dementia living in Scotland please contact Coleen Sloan on 0131 650 4340, or see the website www.alzscotdrc.ed.ac.uk.