Study partners and families of participants are an essential and very valuable part of Brains for Dementia Research.
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. 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.
Sometimes it is harder for the children of a participant to appreciate the participant may view death and dying differently. It is possible that families who have seen the participant live through illness may find the final step of brain donation difficult. Yet the participant has wanted this to happen, and it is a wonderful legacy to leave, facilitating dementia research in a manner that in some ways is of greater value than a financial donation.
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 really welcome to speak to one of the BDR team about how you are feeling. We would encourage all study partners, next of kin, nominated representatives and close family members to think about what the person themselves wanted or would have wanted. By informing the brain bank of the person’s death and enabling the donation to proceed, we are a step closer to a brighter future for people living with dementia.