Date: 21 September 2017
A Berkshire woman has urged others to follow in her footsteps and take part in NHS dementia research after she was diagnosed with the condition.
Maidenhead’s Annie Panton, 76, spoke ahead of today’s World Alzheimer’s Day (21/9), an annual day on which organisations raise awareness about dementia.
She was diagnosed in early 2013 after noticing memory problems.
Mrs Panton said: “When my doctor told me about the diagnosis, he came round from where he was sitting at his desk and cuddled me because I was so upset.”
She was asked to take part in research during a visit to the Older People's Mental Health Service at Nicholson House, Maidenhead, run by Berkshire Healthcare NHS Foundation Trust.
Mrs Panton enrolled on “The Improving the experience of Dementia and Enhancing Active Life” (IDEAL) study in June 2016.
Researchers on the study speak to people who have attended NHS memory clinics - which provide support to people with dementia - and those close to them to identify what helps them to improve NHS dementia care.
People with memory problems, family members and friends receive home visits from researchers once a year for three years to complete questionnaires to assess their mental fitness.
Annie is still living well with the condition. She is able to drive and volunteer for the Maidenhead and Cox Green Neighbourhood Plan Steering Group, which regularly meets to discuss the future of development in the neighbourhood.
She said: “I love driving and I’m glad I’m still medically able to do so, I’d be distraught if I couldn’t.
“I may have been diagnosed with dementia but I can still remember a lot of things. I wonder whether some of the people who have been diagnosed have got a different attitude towards their life and what’s happened to them than I have.
“I wanted to take part in the study because dementia and Alzheimer’s has been made to sound horrendous, whereas I believe through interviewing people like me, people would realise they should be looking at it differently. It’s got a nasty reputation.
“I have little tiny notebooks I carry with me all the time because my memory isn’t very good, but I try to cure that by making sure I don’t forget things by writing them down.
“With the equipment a lot of us have now, if I can’t remember something I just go up to my computer and find out. But there are people who haven’t got computers who are going to suffer greatly because they don’t have that way of finding out anything - or access to this technology.”
Mrs Panton is now urging people to sign up to Join Dementia Research, a nationwide service that asks people with dementia and healthy volunteers to register to be contacted about research studies they could take part in.
Mrs Panton, who managed relocation of staff worldwide during her career, said: “I think Join Dementia Research is a very good idea because I think the public have got this idea that if you have dementia, you’re completely mad - and that’s rubbish.
“This is a way for people with dementia to be encouraged to talk to others and say ‘I haven’t lost my brain completely’ and help understand it better.
“I’m very enthusiastic about being involved in research. Programmes like Join Dementia Research bring the condition into the public eye and give them a better understanding of what it’s actually like.”
Husband of 43 years, Roger, 74, said: “As she’s bored after retirement and wants to keep occupied, I’ve got her to do something about the Maidenhead Neighbourhood Plan for the borough because of her background in relocation.
“The IDEAL study was quite interesting because the questions they asked Annie, which were about her cognitive abilities and how she felt about life, made her reflect on whether things have changed since last year, which they haven’t.
“Dementia is not the end of the road; there’s a long way to go but research can help by letting people know what causes it and what they can do to live a normal life.
“As Annie has this condition we read about it more. The papers say ‘you’re doomed’ but the evidence is that you’re not.”
Carey Lewis, research assistant at Berkshire Healthcare NHS Foundation Trust, said: “Having dementia is life changing for the people with the diagnosis and their loved ones. Everyone’s experience is different and the challenges they face can affect their lives on a daily basis.
“If we don’t understand the causes and the impact it has on people’s lives we cannot improve tools for earlier diagnosis, develop safe and effective therapies and educate healthcare professionals and the public to help care for and support people in the future.
“I hope that everyone who accesses dementia services gets the opportunity to take part in research and there will be breakthroughs that will help minimise the impact dementia has on people’s lives.”
The IDEAL study - which is now closed to recruitment - is led by the University of Exeter, with funding from the Economic and Social Research Council (ESRC) and the National Institute of Health Research (NIHR). Alzheimer’s Society will fund a follow-up of people taking part in IDEAL, which will commence in 2018.
It is supported by the NIHR Clinical Research Network Thames Valley and South Midlands, a Department of Health-funded organisation which works to ensure research can take place in the health service.
Mr and Mrs Panton are part of the Patient Research Ambassador Initiative (PRAI), where members of the public promote NHS research for example via events and health awareness days.
For information on how to become a PRAI visit nihr.ac.uk/patients-and-
Participating in health research helps develop new treatments, improve the NHS and save lives.
The NHS supports research through asking patients if they wish to take part in trials and healthy people if they also wish to take part so results can be compared to those with a medical condition.
Patients are also encouraged to ask their doctor about research opportunities and view trials seeking volunteers at The UK Clinical Trials Gateway at www.ukctg.nihr.ac.uk.
To sign up to Join Dementia Research visit https://www.
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