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Carol’s contribution to research

Watch Stuart discuss Carol's contribution to familial Alzheimer's disease research and support
The initial involvement was by persuading the family to get involved. So they have here the five who all developed Alzheimer’s; their brains are here in the brain bank. She persuaded the family, in the midst of what really was heartbreaking, heartbreaking degeneration in health, for the family to donate the brains. And she did that before they actually came to the point of death. So Carol was involved liaising between the team and the family, because it was one of the first families where there was this genetic marker, and it was important the whole family was involved. So Carol was quite important, because the family is pretty dispersed, they live right across the UK.
So actually keeping in touch and getting them going, she actually did that for the team. Once a genetic form was identified, then she actually made the commitment to the team to provide with them once a year, come down and do MRI scans and psychological and cognitive testing. And she’s done that for a number of years here. So her commitment was to make sure that the research could progress. What we needed was data collected over a span of years, not just over a few months. And Carol made the commitment to do that.
The Alzheimer’s disease society sponsored some of the research a few years back, they’re constantly raising research grants, and part of that was that they recognised Carol’s importance and Carol’s value in encouraging others to get involved with the research. And at that time, the team sort of supported her to go for a post with Alzheimer’s. And then a post for a familial support group here was created and she was employed to do that. She was a good sort of press media link, but also a good link with families and with medical research teams.
So her commitment really has been literally just coming here, involving in the tests and supporting the team, and being one of the media spokesman for the team I think the one thing that’s come out to this, and I hadn’t realised, was how important Carol and the family were in the step forward in identifying that. And one of the wonderful things is I’ve had emails and letters from around the world; some of them from teams, individuals, that began here or were involved with the initial research here in London. Carol is really appreciated, and that helps. It sort of puts it in a context that it’s not all been in vain, there are people still working on that.
And I would commend it; it’s frightening to know that you may have a familial form of the illness, but one of the benefits is that you know that if you’re brave enough to grasp the branch, to grasp the nettle, you do make a difference. And I think that puts this context into a context that’s helpful as we move towards a future. You can’t really think about the future, because if you did you would miss the present. I need to squeeze out of every moment of every day the best I can of the time I’ve got with Carol while she’s here. There are things that we are beginning to put in place.
If anything, I’ve perhaps not been too forward looking enough, and we’re beginning to do that now. But the reality is, all of us need to learn to live more in the present, you know. As a clergyman, I’ve never been at a deathbed, and I’ve been at a number, where somebody said I wished I’d worked longer hours, wish I’d saved more money. But I’ve actually lived, I’ve actually been at a number of people who’ve said I wish I spent more time with the family, wish I’d seen the kids growing up more. And actually this situation we’re in now means that I have to practise what I preach. You have to learn to live in the present moment.

Watch Stuart discuss Carol’s impact on familial Alzheimer’s disease research.

People who have a diagnosis of dementia can have a huge impact through taking part in research, and becoming involved in policy and decision making. Carol was very active in her work in research and support for people with Alzheimer’s disease. She took up a post at the Alzheimer’s Society and at the familial Alzheimer’s disease support group run from the Dementia Research Centre. She worked as a media spokeswoman and encouraged others to take part in research.

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The Many Faces of Dementia

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