Dementia sufferer’s daughter calls for research volunteers

Dementia sufferer’s daughter calls for research volunteers

A retired Oxfordshire IT trainer who is taking part in a dementia study after seeing her mum with the disease has urged others to participate in research

Penny Marsh spoke as researchers around the world mark International Clinical Trials Day today (20 May).

The Harwell resident underwent brain scans, eye imaging and health assessments as part of a University of Oxford study to find early signs of diseases that could lead to Alzheimer’s dementia.

Her mother, Heather Tucker, suffered from dementia for around four years before she died from an infection aged 87 in 2015. Penny, 70, took part in the Deep and Frequent Phenotyping (DFP) study at Oxford Health NHS Foundation Trust and the University of Oxford.

She said: “I have a strong thought that I may develop dementia so the research may well be of benefit to me. Although you can’t think like that, you just have to make the most of life wherever you are.”

The mum-of-two had previously taken part in the UK’s Biobank study, which is gathering health data from half-a-million healthy volunteers to inform research.

Through this, she was contacted about the DFP study, which is seeking people with only very mild memory problems and no diagnosed memory disorder, aged over 60.

It aims to measure changes in the brain that may precede symptoms of Alzheimer’s dementia by many years. At present, only those close to developing or with the condition are diagnosed.

The year-long study involves nine visits to the Warneford Hospital, Oxford and other UK sites. More than 20 have been recruited in Oxford to the study, funded by the National Institute for Health and Care Research (NIHR) and the Medical Research Council (MRC)

It involves blood tests, scans, cognition and gait walking tests, images of the back of each eye and lumbar punctures, where a needle is inserted into the lower spine to test cerebrospinal fluid. A mobile phone app is also used to monitor sleep, mood, memory and reaction times.

Penny said: “It’s interesting because any person who has an MRI in a hospital is usually very worried about the results, whereas I could go in and really enjoy the technology of it all and see how amazing it was – and they always showed us stylish photos during the scans.

“My body can do this, even the lumbar punctures. Everyone I tell gasps when I mention lumbar punctures and say they would not have that done willingly. For me, it wasn’t scary.”

To assess Penny’s memory, her husband was asked questions about his wife and what they had done in the previous weeks.

Penny said: “The memory tests are not an exam you have to pass, you will be tested until you cannot give an answer and this establishes what level you are at.

“It’s a lot but it’s worthwhile, that’s the thing. I feel I have done my bit and I’m certainly very glad to take part knowing we are contributing to research and to society in a way.

“I’ve been well informed and I’ve felt absolutely taken care of. I’m so glad to take part. It may well benefit me, as well as contributing to society and medical research and I got to marvel at the technology of it all.

“I would say to other people thinking about taking part, absolutely go for it, do it.”

Dr Vanessa Raymont, the study’s Chief Investigator, said: “The DFP study has been running for several years now, but the reason why it is so vital has not changed. The breadth of assessments involved will hopefully mean we can identify a group of tests that can pick up and track Alzheimer’s disease before it progresses into dementia, making it easier to develop and implement new treatments. But we cannot do any research without incredible volunteers like Penny.”

Professor Manu Vatish, Clinical Director for the NIHR Clinical Research Network Thames Valley and South Midlands, said: “The last two years have demonstrated, more than ever before, the vital importance of clinical research – we have not only trialled treatments around the COVID-19 pandemic but have continued to deliver on clinical trials across all areas of medicine.

“These trials can only be successful when clinical research is delivered by dedicated teams who have real commitment to effective study delivery. Most importantly, these trials would not be possible without the volunteers who give their time and altruistically take part, not knowing whether they will personally benefit or not.

“Without these volunteers, research would come to a halt and new discoveries would stall. Every one of you who takes part is doing something amazing.”

Participating in health research helps develop new treatments, improve the NHS, public health and social care and save lives.

The NHS, public health and social care supports research by giving patients opportunities to take part in trials. Healthy people can also take part so results can be compared to those with a medical condition.

Patients are also encouraged to ask their doctor or health professional about research opportunities and view trials seeking volunteers at bepartofresearch.uk.

Published: 20 May 2022