FAQs

Over 850,000 people are living with a form of dementia in the UK today, a number forecast to double within a generation. Despite being relatively common, knowledge and treatments are limited, partly because research cannot in many cases be achieved without the use of human tissue.
At present the only way to diagnose dementia with 100% certainty is by examining the brain after death. We need to increase our understanding how particular symptoms in life correlate with what we see in the brain after death, in order to develop better treatments. For example, dementia caused by multiple tiny interruptions to the blood supply of the brain is likely to need quite different treatment to dementia that arises from the abnormal build-up of proteins in nerve cells.

The best brain tissue for research comes from individuals who have had some clinical assessment during life. In Brains for Dementia Research, we set out to register 2,700 people to take part in annual informal reviews and donate their brain after death. Having registered over 3,000 people, we are now closed to recruitment, but some of the Brain Tissue Banks may be able to register new donors separate to Brains for Dementia Research, depending on where you live.

There are other ways you can support dementia research, such as volunteering to take part in research studies. Join Dementia Research is a place to register your interest in participating in dementia research. People with dementia or memory problems, their carers and anyone who is interested can sign up.

Brains for Dementia Research is a major venture jointly funded by Alzheimer’s Research UK and Alzheimer’s Society. Brains for Dementia Research is enabling five leading brain tissue banks and a clinical assessment centre (based at the Institute of Psychiatry, Oxford University, Newcastle University, Manchester University, Bristol University and Cardiff University) to recruit and clinically assess potential donors. This network collects and provides donated brain tissue for quality research into causes and treatments for dementia.

Brains for Dementia Research is now closed to recruitment, but some Brain Tissue Banks may be able to register new donors depending on where you live.

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. Annual assessments normally take place at home, or at one of our centres. 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, neighbour, family member 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.

Sadly, even when a person has given consent for brain tissue donation, it sometimes does not take place, due to circumstances beyond our control. Occasionally this may be because the coroner is involved and the brain may not be released within the time-scale required for taking good quality samples for research. We are dependent on NHS mortuary services to assist with the removal of donated tissue and these may not always be available, particularly over weekends and holiday periods. Please be assured we will do everything we can to ensure donation goes ahead, to respect the wishes of the donor and the commitment they and their family have made to Brains for Dementia Research.

Your representative/next of kin should contact the local brain bank as soon as they can to let us know that death has occurred and that they are still willing for tissue donation to be carried out. We will do everything necessary for the donation to take place. When a potential brain donor dies at home the family doctor will need to confirm the death, issue a Death Certificate and explain what needs to be done to register the death. If death takes place in hospital the hospital doctor will certify death. Generally, the undertaker your family elects to use will make an extra journey to the hospital and we meet this cost directly.

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. Donation does not result in visible disfigurement, so viewing is still possible, and does not interfere with or delay normal funeral arrangements.

This page contains information about what to do when a potential brain donor dies. It is very similar to what needs to happen when anyone dies.

If death takes place at home, nursing or care home – contact the person’s family doctor. The doctor will confirm the death, issue a medical certificate and let you know how to register the death. If death occurs in hospital, the death certificate will be issued by one of the hospital doctors, and you will be given information about how to register the death.

In all cases – please call your local Brain Bank as soon as possible and leave a message if the call cannot be answered. Please leave your name and a number you can be contacted on, the donor’s name, the date and time of death.

Bristol 0117 414 7821
Cardiff (during office hours) 02920 688 042
Cardiff (out of hours/weekends/bank holidays) 02078 480 002
London (during office hours) 02078 480 290
London (out of hours/weekends/bank holidays) 02078 480 002
Manchester 07787 002 307
Newcastle 0191 208 1345
Oxford 01865 234 608

Please carry on with funeral arrangements. BDR Brain Banks will fit in with these.

Once informed the Brain Bank will:

  • Check the consents are in place.
  • Make arrangements for the donation to take place as soon as possible, liaising with the hospital and care home as necessary, and if required, with the Coroner’s office.
  • Often the Brain Bank will ask the undertakers you have chosen to transport the body of the donor to the hospital, but the Brain Bank pays for the additional journey.
  • For deaths occurring at the weekend or during a bank holiday period, donation may take place on the earliest working day.
  • The donation itself does not take long and the donor is taken back to the funeral director straight after.
  • Donation does not impede viewing the body, and there is no disfigurement visible to the viewer.
  • The Brain Bank will let you know what is happening at each step if you wish this.

Thank you for making the effort to contact us at this difficult time.

For a downloadable guide about what to do after someone dies, please follow this link.

We will acknowledge receiving the brain. A detailed neuropathological examination of the brain will be performed. This takes a few months. We ask whether your family would like a straightforward letter of diagnosis. We also ask if your family would like the detailed information from this examination, but as it is not written in lay language, we can send the report to a G.P. of their choosing who can discuss the report with them further. If the results have implications for family members, this can be addressed at that time. If your family would like more information about research supported by Brains for Dementia Research they can choose to receive our newsletter, which will include reports on studies conducted with donated brain tissue.

The donated tissue will be used for ongoing research at institutions located nationally and internationally. Each establishment undertakes research of the highest calibre, reviewed by leading scientists in the field. Collectively, thousands of scientific papers have been published using donated tissue, in areas such as Alzheimer’s disease, vascular dementia, Lewy body dementia, frontotemporal dementia, Parkinson’s disease, motor neurone disease and depression. These have already contributed to the development of current treatments for Alzheimer’s disease, and recognition of other types of dementia, as well as the search for new treatments. During the consent process, donors can indicate whether there are types of research that they don’t want their donation used for, and if they don’t want their tissue being sent to international laboratories.

Every participant in BDR has a study partner. This could be the same person as the next of kin or nominated representative or consultee. Many of the current widely used questionnaires that assess various aspects of thinking, behaviour, mood and daily living activities are designed to be used with a study partner as well as the participant.

Study partners provide a valuable source of information and help to ensure that the data collected is complete. Study partner familiarity with the project may help to ensure that the participant’s wishes about brain donation are heard, even if they are no longer able to express their intentions themselves.
We greatly appreciate the time study partners give to the project, and the contribution they make to research by supporting their relative/friend in the study. We appreciate study partners can feel unsure about some of the questions, but the data collected is anonymous and if the study partner does not know the answer or is not sure, it is fine to say so.

The final step in taking part in the project is brain donation. For many study partners and other family members this is something that is difficult to face and think about, but many tell us it helps to remember that it is what the person taking part wanted. The participant may have seen family and friends go through dementia and have decided that this is something they can do to help research. If you are finding it difficult to think about what lies ahead as a study partner or next of kin please talk about it – if you would rather not discuss it with the participant you are very welcome to speak to one of the BDR team about how you are feeling.

Each Brain Tissue Bank is licensed and complies with current legislation and guidance for working with human tissue. Each tissue bank is located within a university which takes the role of custodian on behalf of Brains for Dementia Research, and the banks are run and managed in accordance with the Human Tissue Authority’s and Medical Research Council’s guidance.

The Brain Tissue Banks are members of the MRC UK Brain Bank Network and follow the MRC scheme to recover some of the costs associated with meeting researcher tissue requests.

Research proposals requesting tissue are carefully considered by the Tissue Request Committee of each Brain Bank (whose constitution is approved by the Ethics Committee) before proceeding. For research studies involving very large amounts of brain tissue such as tissue from the whole cohort, or blood tissue, the request will also be reviewed by the Brains for Dementia Research Unified Access Committee. The BDR Unified Access Committee is made up of expert scientists and lay members. This committee also review requests seeking clinical cohort data and genetic data hosted by the data portal, Dementias Platform UK.

Research progress relies on more people taking part in studies, and so Join Dementia Research was established to help people find out how to take part in studies and to help researchers to find volunteers to participate in their studies. People with dementia or memory problems, their carers and anyone who is interested can sign up.

 

If you are a registered donor or study partner and have a question not covered here, please do get in touch with the BDR Coordinating Centre.