We took time to hear from ‘Join dementia research’ Champion John Spencer for the Wessex area.

JohnSpencerJohn’s wife, Maura, was diagnosed with Alzheimer’s in 2005. However, John explains that they knew about her Alzheimer’s a year before they had a formal diagnosis. Seeking a second opinion, they found themselves at a research unit at Southampton University Hospital, and although getting a second opinion wasn’t possible, they did find out about research trials, which Maura wanted to get involved in. She took part in a drug trial through the Memory Assessment and Research Centre (MARC) at Southampton.

He says:

“My wife had Alzheimer’s, when she first knew, she was in a reasonable state of mind to want to volunteer, to do a drug trial or something, to help others, it wouldn’t help her, she said, but it might help others in the future. She had been a nurse, midwife, health visitor. She was very positive about the whole thing, and that was, in a sense, her way of dealing with it, so she went along to MARC at Southampton and got involved in a drug trial. She felt better about herself because she was doing something positive.

The Alzheimer’s progressed, and eventually I lost her. She spent the last couple of years in a care home. During that time, it became firm in my mind that when I was freer and able to concentrate on things, I would in fact do some drug trials myself and volunteer for studies.”

John had been a scientist all his life, and was also then interested in getting involved in research. He said he feels his wife would be very pleased to know he had got involved.

John is signed up to the PROTECT study at King’s College, London and is currently being assessed to take part in Hippocampus changes in early Alzheimer’s disease study at Bristol University; both through ‘Join dementia research’.

With the MARC, John also took part in DNA Polymorphism in Mental Illness, which required a one-off visit where they took a blood sample and he answered questions. He has also already taken part in a study about the Effects of Stress in People with Mild Memory Problems.

Now he says “I just keep a look out for anything and volunteer”.

What are you doing to tell people about ‘Join dementia research’?

“At the end of last year, I joined Rotary. And I’ve managed to go to one Rotary meeting and give them a 10/15 minute talk with my pull-up banner. At my own Rotary I’ve given a talk. And at another local Rotary, I’ve got a 10/15 minute slot to go and talk to them, that’s about in a month’s time, I think. There’s another one that is tentatively booked in August. And I did work out a plan for all the local ones, must be about 15 or 20. My plan is to expand outwards to more distance Rotaries, and I thought that’s something I can do on a long-term basis.

Initially, of course, I blitzed the local doctors and post offices, pharmacies and things like that around here. Got my posters up and in some places.

I have also stood in the foyer outside two quarterly public meetings of the ‘Royal Bournemouth and Christchurch Hospital Trusts’ with talks by Consultants for public information and interest. Use of the pull up banner and leaflets and posters on a table alongside leaves one free to talk with members as they pass in/out of the lecture room.”

John appeared on BBC South Today for the ‘Join dementia research’ launch in February, where he spoke about his experience of being a carer of someone with dementia.

With his involvement in the local town becoming Dementia Friendly and Dementia Friends locally, he also informed the people there about ‘Join dementia research’.

Furthermore, John is thinking about standing outside a supermarket for an hour handing out ‘Join dementia research’ leaflets. John is also enquiring whether he can put a ‘Join dementia research’ banner up in a bank for a week with a table and leaflets.

What do you tell groups about ‘Join dementia research’? How do you try to encourage people to sign up?

John explains his talk to Rotary clubs. He starts off giving some statistics.

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Then he asks ‘So what is dementia?’, and explains what it is. “I point out that the way people experience it and their behaviour depends on many factors such as physical make-up, emotional resilience, support available to them. I point out that some quality of life can be extended, shared in those closing months or years with the right care support and medication. I drive it home that, believe me, every single hour, day, week with a loved one is worth it, because by then they will know that I lost my wife to Alzheimer’s. So I try to get across a very strong point about how worth that is to be able to do something and make something better for them, even if it’s only for a short time. I then raise the question ‘So what can we do about it?’ And I say the answer is ‘research’. And if cancer research and Ebola research made the steps forward it has, then we might do the same for dementia. ‘So what do we need to do this?’ ‘We urgently need patients and their carers, we need healthy people to volunteer and take part’.”

John then explains about the ‘Join dementia research’ service, and gives an idea of what studies might include.

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“I point out that they can turn down offers if they are not to their liking”.

“I then say their reward for taking part is the knowledge that they’ve helped in the battle to beat dementia, and perhaps helped a loved one, and the children of the next generation and beyond. Our children could benefit by it, that’s your children.”

John takes a phrase from the film The Second Best Marigold Hotel: “By planting a tree now, generations to come may be able to sit and rest in its shade”, saying “I thought that is a really nice phrase why you should volunteer now. It may not be of immediate benefit to you; it might help people in the future. Your children and your children’s children”.

He explains on a local level “you can help by visiting people in need, supporting Dementia Friends groups, businesses that are committed to being Dementia Friendly, and help those needing assistance in shops, helping them fulfil a long and productive life while they may.”

“I urge you to become dementia aware. Go online, sign up to ‘Join dementia research’ or at least see what they’ve got to say about it.”

When it’s at Rotary, he also says ‘Why not make your Rotary club Dementia Friendly?’.

Other work

John is engaged with his local Dementia Friends group and was also involved in his local town, Milford-on-Sea, becoming Dementia Friendly.

John also did an interview for the Alzheimer’s Society magazine, that you can read by viewing their website.


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