My mum has dementia and the doctor looking after her asked us how we would feel about donating mum’s brain to research after she dies. Mum cannot decide for herself any more and I don’t know what she would want. I feel too overwhelmed to think about it.
- One important area of dementia research involves studying the brains of people after death. This allows researchers to better understand the causes of dementia, and will help with the development of future treatments.
- The decision to donate your brain – or that of a loved one – for research is a very personal matter. It is best if the issue can be discussed early rather than left to the last minute.
- A person who is able to make their own decisions may choose to donate their brain for research. For people who have already lost the capacity to make decisions, this choice can be made by their next of kin, provided that this would not be contrary to the person’s previously-expressed wishes, i.e. the person has not previously expressed an objection to autopsy.
- The process of donating your brain is organised through the Australian Brain Bank Network, which has co-ordinators in each state and territory to answer any questions and clearly explain what is involved.
- There are specific procedures that need to occur promptly when the person dies and this will be planned in advance with the help of the Brain Donor Coordinator.
- Information about brain donation and contact details for Brain Donor Coordinators can be found on a Help Sheet from Dementia Australia here.
If your loved one has not registered as a brain donor, you will need to draw on any previous discussions that might suggest what they would think. It is also important to involve other family members in discussions and decisions about this.