We hear from researchers running trials and people who have signed up to take part in them.
What are research trials?
Research trials are studies involving people. They test whether a treatment, therapy or activity is safe and how well it works. Researchers need both carers and people with dementia to sign up to test new care techniques and healthy volunteers and people with dementia to try new drug treatments, and some trials are looking for volunteers to study the effects of creative or sporting activities.
What is it like to take part in research?
Georgina Shomroni had seen the effects of dementia first-hand. Her grandfather, mother and aunt had all received diagnoses of dementia. Georgina was inspired to get involved in research by her mother and aunt, who had both joined research studies. She registered with Join Dementia Research and took part in a study playing online ‘brain training’ games, but she wanted to do more. When she received an offer to join PREVENT Dementia, she jumped at the chance.
PREVENT Dementia is a large-scale study that receives funding from Alzheimer’s Society. Its aim is to discover the earliest signs of dementia. Scientists believe that it might be possible to detect these decades before symptoms begin. Researchers are examining a large number of healthy volunteers aged 40–59. They want to find out whether physical or mental signs point to an increased risk of developing dementia in later life.
Volunteers in the study take a range of tests, including brain scans and blood, urine and saliva tests, as well as memory and thinking tests to examine their brain health over time.
Professor Craig Ritchie from the University of Edinburgh is leading the PREVENT trial. He said,
‘In the next 10 years we’re going to get more and more evidence about the things people can do to prevent Alzheimer’s dementia. Our aim is to be able to take any given individual and say, “Well your risk is X per cent and here are the things you can personally do to help prevent it.’
Georgina told us,
‘The PREVENT Dementia study seems to measure every aspect of the brain. One of the things I had to do was draw a clock face showing a particular time. I remember that when my mother had dementia, she once did this test, and all the numbers were bunched on one side of the circle.’
Georgina also agreed to have an MRI scan and an optional lumbar puncture. When asked about what it is like to work with the research team Georgina said,
‘They explain everything. They want to make sure that you know exactly what is going to happen and are still happy to proceed. All your personal information is handled well and becomes anonymous.’
Caregiving HOPE study
The Caregiving HOPE study focuses on carers living in Bradford, West Yorkshire. The aim is to understand feelings of obligation to provide care, willingness to provide care and how prepared carers feel to provide care. The study will also take into account how confident people feel in their caring role and how it affects their wellbeing.
The first part of the project involved finding both white British carers and carers from South Asian communities to take part. By interviewing these people, the researchers learned about the needs of carers from different cultural backgrounds. In the next stage, they posted out questionnaires and held discussion groups. From these they were able to better understand attitudes to dementia and care, and willingness and preparedness to be a carer.
Dr Sahdia Parveen is the principal investigator on this Alzheimer’s Society-funded project.
Dr Parveen said,
‘In this study, I hope to deepen our understanding of the challenges faced by people with different cultural backgrounds and how we can best draw attention to them. Identifying areas of support will help inform future development of support services and awareness campaigns, as well as recommending coping mechanisms for carers or people with dementia.’
One carer said,
‘It was really nice to be asked about how willing I am to provide care, because that is not something carers are often asked by other people.’
Many participants in the Caregiving HOPE study were signed up to the study through Join Dementia Research. Join Dementia Research helped Dr Parveen to get in touch with people who are often harder for researchers to reach, such as younger carers. Many of the carers who took part welcomed having the opportunity to express themselves.
‘I found completing the survey therapeutic, as the many varied questions covered my personal situation and encouraged me to think about my family relationships.’
Getting involved in research trials
Join Dementia Research has been making it easier than ever for people to get involved with research since it was launched in 2014.
Join Dementia Research is a collaboration between Alzheimer’s Society, Alzheimer’s Research UK, Alzheimer Scotland and the National Institute for Health Research.
If you are interested in getting involved in research you can sign up online at joindementiaresearch.org.uk or call 0300 222 1122.
You will be asked to complete a profile with some details about yourself. Researchers can then get in touch if your details match what a research trial needs.