Research is being undertaken to help people with a dementia diagnosis and their carers. Taking part in research has numerous benefits, including to those taking part. If you are interested in getting involved in research there are local and national projects seeking participants.
World class researchers are working to understand the complex diseases that cause dementia, enable earlier and more accurate diagnosis and to investigate risk factors throughout life that contribute to the development of dementia.
There are many research projects taking place across the UK and in Oxfordshire. Dementia Oxfordshire works closely with researchers in Oxfordshire and we encourage people to take part in studies that are taking place. By taking part in these projects you can support these efforts to find a cure and you may even get the chance to try out cutting-edge treatments.
Your involvement in research could include one-off questionnaires, surveys with follow up interviews, therapy or intervention provided at home or clinic-based drug studies. There is so much research happening across Oxfordshire and the UK that you can find something to suit your interests, time commitment and comfort levels.
Projects in Oxfordshire
Oxford Dementia and Ageing Research (OxDARE) – a partnership between Oxford Health NHS Trust and the University of Oxford bringing together diverse groups who are involved in dementia and ageing research across Oxford’s departments and institutes.
Oxford Drug Discovery Institute – a research institute run by Alzheimer’s Research UK which aims to accelerate the discovery of novel, effective therapeutics for Alzheimer’s disease and other neurodegenerative diseases.
Join Dementia Research – a partnership between national dementia charities and the government that allows you to sign up and receive information about research projects you might be suitable for. This is a national scheme so you can sign up wherever you live in the UK.
Donate to a brain bank – donating brain or spinal tissue can help researchers understand changes in the brain better among the healthy population vs someone with dementia. This webpage contains links to various brain banks around the country you can donate to.
Alzheimer’s Research – sign up to receive regular updates about the latest dementia research funded by Alzheimer’s Research UK. You can also take part in their series of online engagement events, Lab Notes, to take a deeper dive into the research they are carrying out.
The Oxford Brain Health Clinic
Some of our clients are referred to The Oxford Brain Health Clinic. The clinic is a research and clinical facility that aims to improve the assessment and diagnosis of memory problems. At the clinic, patients are given high-quality assessments that are usually not available on the NHS and are offered the opportunity to take part in related research.
To find out more about The Oxford Brain Health Clinic click, here.
People caring for those with dementia are also a key focal point of research. These research projects aim to help understand and improve the experiences of carers. Including their experiences of navigating services, mobility experiences and how COVID-19 has impacted upon their life quality.
These studies generally involve questionnaires, interviews or trialling new online resources. Research opportunities for carers will be uploaded to our directory
Benefits of Taking Part
Dementia Oxfordshire encourages PWD and their carers to take part in research because, irrespective of the research benefits, participating in research contributes to people’s well-being and helps people live well with dementia. Specifically we think that taking part in research helps people to:
- Feel involved with something meaningful and develop a sense of making a contribution
- Take an active role in their own healthcare and have more sense of autonomy
- Feel involved with something big and important
- Participate in something that involves social interaction with people they wouldn’t otherwise meet
- Feel in control of their lives
Much dementia research involves talking therapies involving a high level of social interaction. Existing research shows maintaining social interactions and connections is a significant factor in delaying and mitigating the impact of dementia symptoms.
Advice for Taking Part
Are you thinking of taking part in research but have some concerns?
Researchers and ethics committees want to ensure that participants are treated well and have a positive experience of taking part in research and take steps to do so.
- Details of the studies should be readily available before you start, explaining what it will involve, if there are any associated risks and that your involvement is entirely voluntary, clearly stating your right to withdraw at any point throughout the research project.
- The Alzheimer’s society has put together a blog post on myths around taking part in research projects.