JDR_cmykWelcome to ‘Join dementia research’, where we help volunteers connect with researchers, to work together on important studies into dementia.
Some of our volunteers are leading the way by
becoming Champions, helping others understand the benefits of participating in research.

A former Group Technical Director of a public computing company, after retirement Peter Ashley was diagnosed with the uncommon variant Dementia with Lewy Bodies in 2000.

Subsequently, he has become an expert ambassador on mental health issues, in particular those of dementia.

Peter believes his productivity and drive is thanks to “a determined work ethic, ‘exercising the brain’”.

Just a few excerpts from Peter’s ample CV include sitting as a Governor of his local Mental Health NHS Foundation trust, co-founding the Dementia Engagement and Empowerment Programme – which facilitates networking between locally based groups of people with dementia and their carers – and serving as an Ambassador of the Lewy Body Society.

Awarded an honorary Masters degree from the University of Worcester for his work in the fields of health and society, specifically dementia, Peter now sits as a member on steering group for the university’s Association for Dementia Studies (ADS).
He is currently participating in two major research projects being pursued by ADS.Peter Ashley (1)

Peter has worked with a variety of professional and governmental bodies on policy, including the Department of Health, the National Institute for Clinical Excellence, the National Audit Office, and the Royal College of Psychiatry to mention a few.

He continues to speak to national and international conferences, and stresses always the importance of considering people with dementia and their carers as two sides of the same coin – “when you speak about one, you must always speak about the other.”
Over fifteen years Peter has maintained his interest in good communications and the latest technology applications for treating dementia.

How did you find yourself first involved with Join dementia research?

It was two things really, my personal situation regarding dementia, and my intense involvement in the dementia community. Anything concerned with dementia concerns me, and I’ve always felt that involvement by people with dementia or any other condition, in their respective research programs, is a good thing.

I sat on the various committees that founded RAFT, the predecessor to Join dementia research, where we debated the merits of setting up a register system like Join dementia research. I was involved right from the outset, when it was a twinkle in our eyes!

We really discussed the very bits and pieces of such a system, and eventually came to the consensus that volunteers should be introduced slowly to the people who conducted research.

We concluded that researchers weren’t familiar with the community of people they could approach, and that community itself wasn’t familiar with the people who were carrying out the research, it came down to the system we have today where one person – a volunteer – can be introduced to another – the researcher.

How have you been involved with the service?

I truly believe that working hard at your condition helps you fight the consequences, and although I can’t say that’s universally the case, I know of lots of people involved, keeping themselves mentally active, and who have seen true longevity in themselves.

That’s what I saw in Join dementia research, not only the opportunity to take part in something good for the community as a whole, but good for themselves as individuals. That is key to my philosophy.

I speak to a lot of people, many with diagnoses of dementia, and I try my best to pass on these messages – the benefits that can accrue from active involvement in efforts around their condition.

What I do is seek out the community of people with a diagnosis of one of the dementias – of which there are a hundred different variations! I try and speak to individuals and communities with these conditions, and encourage them to get involved with Join dementia research.

This isn’t easy, and I’m always prepared to go to them to pass on the message – to be a champion, you have to get off your backside and go to the audience!

As well as focusing on the North-West, I also do a lot of national work, trying to ensure all the various groups and charities in the field of dementia are communicating with each other. That way, the message spreads all over!

Peter Ashley (2)Could you share some of your personal experiences with research?

Absolutely – I’ve never found it uncomfortable or invasive, and I’ve never had to do anything more dramatic than give samples.
I want to reassure people that you will be asked at each stage if you want to proceed – if for example you aren’t comfortable giving blood, you can simply inform the researcher and they of course will take this into account.

I’ve just recently been involved in research into genetics that only involved me giving samples of my blood and swabs of my DNA, and agreeing to them being used for testing. In exchange, I’ve received the satisfaction of contributing to a major project!

My personal experience is that taking the right approach to a condition you’ve been diagnosed with then you stand a much better chance of surviving for a reasonable amount of time, and that is a marvellous feeling! I have a good attitude towards things, and I think that has helped immeasurably.

What would you say to people, to encourage them to Join dementia research?

I want to specifically address carers – carers and people with dementia are two sides of the same coin. They are inseparable, and you can’t talk about one without mentioning the other.

At the same time, the person with dementia is an individual – it is their dementia, not anyone else’s, and their individuality is paramount.
They must not lose that individuality, and carers must not assume too much responsibility for the patient, even though they do it out of love.

I’d want to tell people about what the goals of the service were, and why we’ve taken the approach we have. I’d like to avoid pushing people into research, rather that we should inform people about the benefits that can accrue from research.

I’d like people to understand how we can take the details of volunteers, and match them to the studies we also have the details of.

What I don’t want is to tell people that they are volunteering for research, where they’ll expect to have a pill stuffed down their throat that they don’t know anything about!
I want to emphasize the benefits, the kinds of results we’ve gotten from research and from the people who volunteer and get involved.

At the same time, we must avoid over encouraging people’s expectations – to be careful about promising immediate and beneficial results from participating in research. I believe in steadily encouraging people to become part of the larger research agenda.

Lady-LookingatleafletFind out more about Join dementia research, and you can help, by clicking on ‘Why sign up?’. You can also help us spread the word online, through social media, and with our free promotional material.

Have you been involved in a study on the service? What did you learn? If you are interested in telling your story, please complete the online sign up form.

If you would like to share your story, please email us at comms.jdr@nihr.ac.uk. Please follow us on Facebook + Twitter and share your story!