Date: 13 July 2017
Patricia Postles from Woodley, Berkshire talks about how she and her husband Noel decided to sign up to Brains for Dementia Research (BDR). BDR is a brain tissue donation scheme in England and Wales, now closed to general recruitment. People with and without dementia who signed up agreed to be interviewed through the course of their lives, as well as providing their medical histories help researchers understand the effect of dementia on the brain.
How did you come to sign up to Brains for Dementia Research?
Noel had been diagnosed with dementia in 2011. Someone from the memory clinic visited us at home to give us information about Brains for Dementia Research which was looking for people to donate their brain tissue upon death.
We read through the information and spoke about what was involved in detail. We decided that we both wanted to do something useful to help dementia research and hopefully future generations of our family.
I had to be really sure that this was something my husband was sure he wanted to do. Because he was in the early stages of dementia I was happy that he could make the decision. We were also given the reassurance that even if we signed the forms, we could change our minds any day.
Noel passed away in 2014 and I have seen first-hand how dementia affects people and their families. It is important that dementia is defeated and we won’t find a cure without research being done.
How have you found taking part in Brains for Dementia Research?
I receive a telephone call every year to see if I am still happy to take part and once every two years someone comes to visit me. I am able to say if it’s not convenient or don’t have time but that has not been the case so far.
I am a member of a local church group and we have chosen Alzheimer’s Research UK as our chosen charity for the year. We hope to raise as much money as we can by organising different events in the community.
What would you say to people interested in taking part in research?
It’s been a positive experience and being a part of research gives me hope that we will make advances in treatments for dementia. A lot of treatments available to us now for many health conditions would not exist without research. I think it’s important we continue to do it. I certainly wouldn’t rule out taking part in research again in the future.
Brains for Dementia Research is no-longer looking for new volunteers to sign up, however, ‘Join dementia research’ is a national service where you can register your interest in dementia studies across England. The service connects people with studies they may be able to take part in. People with dementia or memory problems, their carers and also people without dementia or memory problems can sign up online, by phone, by post or by talking to a health professional such as their GP, nurse or consultant. The service is run by the National Institute for Health Research in partnership with leading charities Alzheimer’s Research UK and Alzheimer’s. More on Join Dementia Research.