Alison Nicolson is championing ‘Join dementia research’
As we continue on our journey of meeting the ‘Join dementia research’ champions, this week it’s the turn of Alison Nicolson.
Alison, whose husband with diagnosed with Alzheimer’s in 2008, champions ‘Join dementia research’ in the Thames Valley and South Midlands area. She tells us some of her story.
Alison used to be an Environmental Scientist and her husband, Norman, was Head of Scientific Services at Thames Water. Both had been scientists and worked in research – they had their own Environmental Science business, but they gave that up when Norman’s dementia meant he couldn’t do the work, “so that predisposed us to be interested in research – it was a natural progression once he was diagnosed. We are both ‘finding out’ people” Alison says.
“Norman received his diagnosis in 2008, but it was quite late in the progression of the disease” Alison explains. “He was very bright…he gave up work in 1996 because he could no longer do the cognitive work. He couldn’t cope with his tax return and couldn’t write reports for days after he’d done an inspection”.
“Norman was an analytical chemist, but also a superb mathematician, and he kept forgetting the codes for the door, which he’d chosen, his pin numbers etc. At that stage we went to a GP, but they told us that there wasn’t a problem. He was given a standard test, the MMSE test and got 29 out of 30. It wasn’t until two years later, when Norman fell into a major depression, that the GP agreed there was a problem. Then it was very good because we eventually got in front of a consultant, who said that his symptoms were consistent with Alzheimer’s with somebody who was very, very bright. Because even then he was still getting 28 out of 30 on the test.”
So at what stage did you both get involved in research, was it quite soon after Norman’s diagnosis?
So we got the diagnosis in 2008 and when we got it there was a leaflet in the clinic about Optima. I was reading all the leaflets in the waiting room and I picked it up. We got involved in Optima and it was the best thing we ever did. What Norman was able to do for short periods, was put in a huge amount of effort to appear normal. But the two nurses that came from Optima, Mary and Philippa, spent a significant amount of time with both Norman and I over a period, so they were able to see a much truer picture of things. A GP or a Consultant doesn’t have that amount of time to spend with a patient, you couldn’t expect it of them.
What happened with the Optima project was that we got the same team all the way through, you could tell these people everything, any worries you had, and they were interested in us, very supportive.
That was the first project that we did, and since then we’ve done everything that’s come up that’s suitable – a cognitive archaeology study, the PROVIDE study, and many others. And Norman has agreed to donate his brain and his spinal cord – once he’s finished with them!
I also have a family history of dementia. My granny died of dementia, and I had two aunties that died with dementia, and my Dad got Lewy Body dementia. I also have a cousin that died of Lewy Body dementia, and now a third aunty has been diagnosed with dementia, which could potentially be Lewy Body. So I think we might have a dominant gene for Lewy Body dementia going on – if there is a gene for it. So I have just signed up for the PROTECT study, where they give you a genetic swab and an annual test for early symptoms.
Research is the only way that there’s hope. You know, cancer used to be the word you never mentioned, because there was no hope. But if you look now at the money that’s poured into cancer research, now there’s lots of hope. We need the same change for dementia. Because, mental illness and no hope, I mean you’ve got two big barriers there, people want to keep it under wraps.
What made you decide to get involved with ‘Join dementia research’ specifically?
Well, once a year in Oxford they have a research day, where they used to have posters in the foyer and people giving talks. So I went along to that and met a chap there called Olivier Bazin from Local Clinical Research Network: North Thames, and suggested to him that I help with making the information on the posters easier for the public to understand. One of my strengths as a scientist was my ability to communicate, so I used to write scientific reports for lay people. Well by the time he got back to me, things were really bad at home and there was no way I could do anything. And then it was Mary, the Research Nurse, who said Alison would be a good Research Champion. That must have been when ‘Join dementia research’ was just being formulated. And then this summer Olivier contacted me again and said ‘Mary said you would be the exact person for this, would you do it?’ So I said yes, and the rest was easy.
How have you been involved so far?
Well I haven’t been involved in the formulation of what you do really, the first thing I did was come to the Media Training Day in October. So I knew that there were going to be research champions. Norman is now in a really good care home, so I’m functioning again and can be more active.
How have you been helping and encouraging people to sign up to ‘Join dementia research’?
Well, since we had that Media Training Day, I’ve been away for six weeks, which doesn’t help! But basically what I’ve done is emailed everyone in my contacts telling them to sign up, and they are dotted around the country. I’ve been encouraging people in the village to sign up, things like that – using my own direct contacts. But what I plan to do is get in touch with the other two Champions in my area and co-ordinate efforts with them – to see if we have different ways of opening doors between us and see where the best return on effort will be. I think that really we need to be in the clinics, at least with a poster, if not with a laptop. It seems that what you want is people who have got a diagnosis. So I’m going to talk to my own GP, to start with, as I have a good relationship with him, and from there the surgery. But what I’d really like is to persuade them what they should do is offer an MOT to everybody over 75, to screen them for dementia.
There’s also a memory clinic next door, so what I need to do is get them on board, but I really think that people respond much more to a person with a banner and a laptop, than just a leaflet, so I’d like to go and spend a day there encouraging people to sign up. I also want to tackle the care home where my husband is and I thought the WI might be a good one – their training college is quite close to where I live.
I’m more than happy to give talks – the other thing I thought I might produce is a lecture to give on cruise ships, because when I’m away I’m working on cruise ships and their demographic tends to be older people.
I’m also going to speak to the editor of the National Bridge magazine and see if she wants to do an article about what I’m doing. I teach Bridge – I call it ‘keep fit for the brain’ as it uses all different parts of the brain: social skills, language skills, number skills, deduction and inference, spatial skills, which you’re using all together – and I also train people to teach it. I also support a network of volunteers who teach bridge in schools. It was Norman who taught me how to play, so it’s important to us.
What do you want to tell people about ‘Join dementia research’?
Together we can beat dementia – it’s as simple as that! If people help by taking part in the research, we will find the answers.
Alison is on the Oxford University Hospitals (OUH) induction training programme “telling everybody who starts work at OUH – whether they’re a cleaner or a chief executive – about dementia and how to deal with it.” She is also part of the OUH Seldom Heard project and Oxfordshire’s Carer’s Voice panel.
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