A grandmother with dementia speaks on why she is taking part in research at Oxford Health.
16 May 2017 | Research
Joan Cansfield, 76, who was diagnosed with mild cognitive impairment in April 2014, said: “My condition is a nuisance because Bill (her husband) can remember everything since Adam and Eve, and I have to ask him things.
“All of a sudden you’re not in control and I don’t like that because I’m used to doing things for myself.
“I started noticing it three years ago and it was becoming intolerable. I found myself asking the same questions again and again and I was scared of it all.
“When I got my diagnosis, part of me didn’t want to accept that anything was wrong with me.”
Signing up for research
The following year, Joan signed up to Join Dementia Research, a nationwide service that asks people with dementia and healthy volunteers, often their spouses, to register to be contacted about research studies they could take part in.
This led to the grandmother-of-two taking part in the Reducing pathology in Alzheimer’s Disease through Angiotensin taRgeting (RADAR) trial through visits to the Oxford Health Witney Memory Clinic, West Oxfordshire.
This is looking at whether a drug called losartan – also used to control high blood pressure – slows damage to the brain in dementia.
Participants aged 55 and over are asked about their condition and general health and to take part in brief memory and thinking assessments. Their blood pressure is also measured and MRIs are undertaken.
They are given losartan or a placebo so the two can be compared. Participants are not told which one they are taking.
‘Someone is batting for you’
She said: “My experience has been very pleasant. The researchers are supportive and you need to know that someone is batting for you.
“Our study nurse, Jemima, is our lifeline. It’s comforting to know that someone is helping.
“Before taking part I was terrified. I’m still scared, but I don’t have the same sort of negative thinking about it.”
Husband of 54 years Bill, 76, said: “She has run the family for 50-odd years, which is a fair feat. Now she hasn’t got the same confidence that she had and I think that frustrates her as much as anything.
“Three or four years ago you wouldn’t think there was anything wrong with her as far as memory is concerned. The first year it seems to go quite slowly, but the last couple of years it has accelerated a little.
“I think we’ve seen Jemima four or five times and the longest was an hour. I can tell you it’s the highlight of Joan’s year.
“With being retired and living in a rural environment, we’re always happy to travel. It was Jemima’s choice to come to us, but we would have been quite happy to come to the hospital. It has been an enjoyable experience.”
Join Dementia Research
Research nurse Jemima Hume, from Oxford Health NHS Foundation Trust, said: “Join Dementia Research is very good because it is a way for the patient to look up studies and actively seek more research opportunities.
“Research is about being very transparent with patients about what is involved, and also understanding their circumstances, so quite often your role as a research nurse and co-ordinator is listening to what the patient wants and respecting that.
“Studies like the RADAR trial give me a really nice unique bond with patients because I am an add-on to their care and my role is a really nice way to make sure it is done in a patient centred way.”
To sign up to Join Dementia Research, visit https://www.joindementiaresearch.nihr.ac.uk or call 0300 111 5 111.
The RADAR study is recruiting participants, contact the RADAR team at firstname.lastname@example.org/0117 331 3317.
Last updated: 16 May, 2017