This week we meet Chris Carling, who is a ‘Join dementia research’ Champion in the Eastern region.

ChrisCarlingShe explains: “I’ve been involved with dementia issues quite a while because both my parents had dementia of different kinds at the same time, and that was over quite a long period.”

Her mother was never formally diagnosed, although Chris says “it was clear she had Alzheimer’s or an Alzheimer-type dementia”. The closest she came to a formal diagnosis was when the old age psychiatrist who diagnosed her father with vascular dementia observed that her mother seemed to be in the early stages of Alzheimer’s.

Chris wrote a book about their experiences and her efforts to navigate the health and social care systems. It’s called ‘But Then Something Happened: A Story of Everyday Dementia’. She cared for her parents, who eventually went into residential care. She says “the book is partly about their relationship. They’d been married for 70 years. How do you sustain a relationship when one partner has Alzheimer’s and the other has vascular dementia?”

Talking about her mother, Chris explains:

“I learnt fairly early on that people with dementia have strong emotions. Cognitively, eventually they may be very lacking, but emotionally they’re as alive as the rest of us. And so with my mother, she was very sunny in her Alzheimer’s. She laughed and smiled a lot, and I realised that at some deep level she knew she needed people around her to be pleasant and happy. By smiling and laughing she was very attractive to people; they were drawn to her and responded warmly which was what she needed. Interestingly,  she hadn’t been that sort of person. She was liable to be very anxious. I was surprised she became so sunny and popular in her very old age.  And I think, although she had lost her skills, at some level she was able to get what she wanted, which was an environment which was warm; because, I guess, she was operating on an emotional level. She was operating quite skilfully at that level, although she had no idea where she was. She didn’t know she was in a residential home.”

“I tried to question my mother about what was really going on in her head at the stage when you could still question her. For instance I said ‘Well, you used to go shopping. Who did you go with?’ She knew it was with Fred, her husband, my Dad. But eventually she would say something like ‘But I don’t have a picture’, so it seemed that not seeing the context, the bigger picture meant that she couldn’t really understand.”

Chris’ mum moved into a specialised dementia unit in a care home. Her dad moved into the home subsequently too, and later also transferred to the same specialised unit.

Speaking of her dad, she says:

“Unlike my mother, my father did mostly know what was going on, though there’d be days he’d be confused, and he believed he was still at work or in some other scenario. Normally he didn’t say very much because with vascular dementia your language, word finding skills are affected. But on those confused days, on the days where he believed he was somewhere else, the days when he believed he was in some other period in his life, he would regain his language. It was interesting that he would talk much more fluently.”

What made you decide to take part in championing ‘Join dementia research’?

As well as mentioning her interest in dementia through her parents’ experience, and also the opportunity the service provides of using her communication abilities, she says:

“Well, I was aware that research was not so much going slowly, but rather that the outcomes of all sorts of tests for new drugs and so on was actually quite slow. So it seemed to me that anything that could result in it going faster and being more efficient would be useful. The idea of the ‘Join dementia research’ register to match up studies with individuals who have said they were willing to take part in dementia research seemed to me a very good idea because in conversation with people, I understood that researchers often spent an awful long time just finding subjects.”

Why do you think research particularly is important into dementia?

“I think it’s important particularly because if one can find ways of delaying the onset or mitigating the symptoms for some time, then it means that a lot more people can live well with dementia. I sincerely believe that one can live well with dementia if people around you understand something about the condition. And so I think that if research can produce some drugs that may not be a cure but would allow the progress of the disease to be delayed this could make a huge difference. After all, people with other chronic illnesses like, for example, diabetes can live with medication quite a long time. I’d like to see a time that people with dementia can live well with their dementia because they are able to take medication that can improve some of the symptoms, and allow them to retain their cognitive skills longer. And I think it may well be that with more research, if more researchers worked in dementia, and more funding was available, that it’s more realistic to think that we might find some drugs that are effective in delaying the disease.”

Have you got any other plans for encouraging people to sign up?

“I’m working with a research nurse at the Clinical Research Network in the Eastern region, Julie Philps. We are looking at speaking at carers groups because that seems like a good way to connect with people with dementia, and their carers as possible people to sign up. I’m also speaking to the members of our local Dementia Carers Support Service. That’s people who are buddies to people caring for someone with dementia.”

Chris’ book is also on the Reading Well Books on Prescription for dementia list drawn up by the Reading Agency. Chris explains the agency have “a scheme whereby they choose 25 books about a particular condition, in this case, dementia, and they get the libraries to buy these books. They then publicise the list through GP surgeries and places like that, so that people who are diagnosed with dementia or their carers or people who are more generally interested, can know that they can get hold of these books”. She adds: “In Dementia Awareness Week, I’m going to do a couple of library presentations of my book, but I’m going to take the opportunity as well to talk about ‘Join dementia research’, so hopefully in the audience there will be people with a particular interest in dementia that have come for that reason and might sign up.”

Chris also hopes to get a piece on ‘Join dementia research’ in ‘Cambridgeshire Carers’, a carers quarterly magazine in Cambridge.

What would you want to tell people about ‘Join dementia research’?

“I suMRIppose I’d want to tell them that research is going to be the most important way forward, that getting more research underway is going to be the best way forward for improving the situation of people with dementia and indeed their carers; so anything that can facilitate that, and ‘Join dementia research’ certainly does, is highly worthwhile. I would tell them that up until now, researchers have often had to take a long time to find subjects for their studies, so that a register that provides a number of potential volunteers who have said that they are willing could be invaluable.”

Chris is also looking at becoming a Patient Research Ambassador through the Clinical Research Network. You can find out more about this scheme by visiting the National Institute for Health Research: Clinical Research Network website.

You can read more on Chris’ blog post for Alzheimer’s Research UK.

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