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Ever considered volunteering for research?

Dr Laura PhippsKirsty MaraisClaire LucasRobin BrisbourneKaty StubbsFaye MonkEleanor Hall

We have seen a lot in the news over the last few months about recently published dementia research studies. This might have got you thinking, how do I get involved in research?

Thanks to scientific research we understand more about the brain, and the diseases that affect it, than ever before. Scientists have only been able to make this progress because of the thousands of people who have volunteered to take part in dementia research studies.

In 2015/2016, more than 34,000 people took part in dementia research. This is an increase of 156% over the previous two years. It is fantastic to see a greater number of people getting involved in studies, but we can only keep making progress in research if we keep up the momentum.

People choose to take part in research for all sorts of reasons. Some feel that research is something positive they can do in the face of a progressive condition, or that it might bring benefits to future generations.  Studies can provide an opportunity to learn more about dementia and health, and to be part of a community of volunteers.

There are lots of different studies going on all over the UK at any one time, and you don’t need a diagnosis of dementia to take part. Although people with a diagnosis have an important role to play, some studies need to recruit people without dementia, known as ‘healthy volunteers’, to make up control or comparison groups. We also need carers to give their opinions, for example on the provision of care. Some dementia studies may focus on those over 65, but we’d encourage anyone over the age of 18 to consider taking part.

How do I find out about studies going on in my area?

Join Dementia Research is a national service that allows you to register your interest in taking part in dementia research studies, connecting you to researchers looking for volunteers. Signing up is easy. You just need to provide some information about you and your health. It is also possible for a representative to register on someone’s behalf.

If you match to a study, the research team may contact you to explain what is involved and ask if you’d be interested in taking part. You can think about it before you decide; you do not have to take part in every study you are matched to. Whatever you decide, your details will stay on the register and you may be matched to new studies in the future.

There are around 100 studies currently recruiting volunteers through Join Dementia Research. Here are just a few examples:

The Mini Linguistic State Examination Study

Primary progressive aphasia (PPA) is a rare form of dementia caused by damage to parts of the brain that control our personality, emotions, language and behaviour. The purpose of this research study is to develop a simple clinical test that can be completed during a doctor’s appointment. The test will help a specialist to decide whether someone with language problems has Alzheimer’s disease or another, rarer cause of dementia.

The study involves a one-off visit taking around two hours. The research team are looking for volunteers in the London and Cambridge areas aged 40-75 years who are not experiencing problems with any aspect of their memory and thinking. The researchers also need people in the London area with primary progressive aphasia.


Suvorexant (MK-4305) Insomnia in Alzheimer’s Disease

This study aims to test a drug, Belsomra® (MK4305), in people with mild to moderate Alzheimer’s disease who have trouble sleeping. The study will measure changes in sleep pattern and monitor for any side effects.

The study will last for approximately eight weeks and involves visits to a sleep laboratory. The research team are looking for volunteers aged 50-90 years who have a diagnosis of Alzheimer’s disease and insomnia. Volunteers also require a study partner to attend all visits with them. The study is recruiting at sites in London, Guildford, Stoke and Middlesbrough.


PROTECT Study

This extraordinary long-term project is supplying dementia researchers with vital information through a series of online assessments and games. Researchers are hoping it will improve our understanding of what happens as the brain ages and how we can reduce the risk of developing dementia. Contributors have their short and long-term performance monitored by researchers in order to help understand how our brains change over time.

The study is looking for people across the UK aged 50 and over, who do not have a dementia diagnosis, to volunteer. You’ll need to be able to access a computer to take part.

Find out more and sign up:

Visit www.joindementiaresearch.nihr.ac.uk or call the Dementia Research Infoline on 0300 111 5 111.

Join Dementia Research is delivered by the National Institute for Health Research in partnership with Alzheimer’s Research UK, Alzheimer Scotland and Alzheimer’s Society.

Read our recently updated booklet ‘Getting involved in dementia research’ here.

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