Case study: Why I am championing dementia research: Fiona’s story
“It is important to do research with people that currently are living with dementia so we can learn from their lived experiences as well as the experience of their carers.”
How did your interest in dementia research develop?
My father had Lewy body dementia and as a family, then, we knew absolutely nothing about dementia. I'm trying to find out more information about dementia so I am better informed and I’m really interested in any familial link as more than one member of my father’s family had, or has dementia. I’m also interested in finding out about preventative measures in terms of diet, lifestyle and well-being that could possibly slow down the progression of dementia once diagnosed.
How did you find out about Join Dementia Research?
I signed up for a course on dementia with ‘Future Learn’ and through that course I came across the Join Dementia Research website. Once I saw it I wanted to sign up and be actively involved in dementia research. Signing up online is easy and quick to do. There is now an option for the Alzheimer’s Society or Alzheimer’s Research UK to help you register over the phone. I receive notifications from Join Dementia Research about studies which I may be interested in joining. So far I have signed up to take part in Great Minds and have completed a feedback survey. I am going to become a Join Dementia Research Champion and raise awareness of the service and dementia research with friends, family and my local community.
Why should people sign up to Join Dementia Research?
I think it's really important to have data available for future generations. Sometimes things are found by accident. For example, researchers may find answers in familial genetic links and this can only happen through studying families that had more than one occurrence of dementia. It is important to do research with people that currently are living with dementia so we can learn from their lived experiences as well as the experience of their carers. We need to make sure that the person living with dementia is always consulted and their experience is taken into account within research to help us better understand the condition and, hopefully at some point in the future, find a cure.