Case study: Taking part in dementia research: Penny's story
Taking part in dementia research: Penny's story
Oxfordshire's Penny Marsh took part in an Oxford dementia study after seeing her mum with the disease.
Penny, a retired IT trainer from Harwell, 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.”
Patients are also encouraged to ask their doctor or health professional about research opportunities and view trials seeking volunteers at bepartofresearch.uk.