Over 800,000 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 very 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 upon post mortem. 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. For people taking part in Brains for Dementia Research this will involve informal interviews every one to five years with a trained support nurse/psychologist. If you feel this is something you would like to do please contact the Coordinating Centre. We are now largely full but if there is space in your area you will be contacted by the research nurse to discuss this, and given information and a consent form/consultee agreement (if you are acting for someone with dementia) to complete and return. You will be given as much information as you require, and the opportunity to ask as many questions as you like. You may take as much time as you need to consider your decision. If you decide brain donation is not for you (or your relative), your decision will be respected and your (or your relative’s) care will not be influenced in any way.
Brains for Dementia Research, the first major venture jointly funded by Alzheimer’s Research UK and Alzheimer’s Society, highlights the project’s importance to charities, doctors and scientists in the search for effective treatments for Alzheimer’s disease and other dementias. Brains for Dementia Research is enabling five leading brain tissue banks and a tissue donation 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.
We are close to capacity in almost all centres, but please do get in touch as we are still recruiting a small number of potential donors, and if we cannot register you we may be able to point to other ways of helping with dementia research.
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 us as soon as they can to let us know that death has occurred and that they are still willing for limited post mortem and brain 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 Medical 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. Donation does not result in visible disfigurement, so viewing is still possible, and does not interfere with or delay normal funeral arrangements.
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 send the report to a G.P. of their choosing, for them to discuss with him/her. 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 within the five member brain banks of BDR, and other laboratories, both within the UK and further afield. 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 neuron 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.
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.
Brains for Dementia Research is a member of the MRC UK Brain Bank Network and follows the MRC scheme to recover some of the costs associated with meeting researcher tissue requests.
Brains for Dementia Research has a management committee with an independent chairperson and lay members, in addition to scientists and clinicians. Research proposals requesting tissue are carefully considered by the Tissue Request Committee (whose constitution is approved by the Ethics Committee) before proceeding. For research studies involving the collected clinical data alone, there is a similarly constituted Data Access Committee.
The value of donation is recognised by most religions, and traditional funeral services may go ahead as planned. However, it is recommended that you consult with your religious leader or advisor if you have any concerns. If burial needs to take place within 24 hours of death it may not be possible to take part in Brains for Dementia Research, please talk to the research nurse/field team about this.
If you do not have a neurological disease but are thinking of brain donation we would like to hear from you. It is important in research to have healthy brains (called ‘normal controls’) for comparison, from individuals who have also had regular clinical assessment in the same way. There is a real shortage of healthy brain tissue donated after death yet these donations are equally important to research.
We are often asked whether BDR can take the brain for dementia research and the rest of the body be used for other kinds of research. It is possible to combine registration with BDR and NHS organ donation for transplant (the national organ donor card scheme).
As most anatomy schools require the body to be intact, for much of the country, brain donation for research is not combinable with whole body donation for medical education. However, the situation is changing, and both London Anatomy Office and Newcastle Medical School accept a proportion of whole body donations for surgical technique training and, as the preservation method is different, the brain can be removed beforehand for research. Thus for participants registered with BDR in London or Newcastle it is possible to register also for whole body donation.
Please discuss this with the research field team before completing your consent form. It is important to note that there are still potential logistic problems with multiple organ donations, and there is no guarantee that any given organ or whole body will definitely be donated.