Dementia research: taking part in a study


By Claire Lucas | Tuesday 24 February 2015

JDR-300It was all in the name of user testing, really – the day I signed up for ‘Join dementia research’ it was more a case of ‘putting myself in the volunteer’s shoes’ than thinking seriously about taking part in a study. And yet… a few months later, here I am, a (hopefully) brain-healthy person doing my bit to further our understanding of dementia

When I joined Alzheimer’s Research UK in March 2014, it was to work on the new Dementia Research Infoline and help people sign up to take part in research. ‘Join dementia research’ allows you to register your interest in taking part in dementia studies so that researchers can contact you with details of projects you might be suitable for. There are two ways to sign up; you can either visit the ‘Join dementia research’ website and sign up for yourself or on behalf of someone, or you can call the Infoline (0300 111 5 111) and register with us that way. It seemed a good idea to sign up myself, so that I would be familiar with the process if anyone phoned up with registration difficulties.

Taking part in dementia research

At first the service launched in a trial phase, with just a few research studies listed, all in the pilot region of
North Thames, covering North London, parts of Essex, Hertfordshire and Bedfordshire. Before long, however, more studies were being added, with recruitment centres in other areas of the country. Then I was excited to receive an email inviting me to sign up to the PROTECT study.

This major study, which is being run by scientists at King’s College London, is set to last for ten years. Its aim is to gather data to support innovative research to improve understanding of the ageing brain and why people develop dementia. Those taking part in the study provide lifestyle information about things like diet, exercise and health, and complete an initial online assessment of their memory and reasoning. This is followed up by further annual assessments, allowing the researchers to monitor any changes in memory and reasoning over time.

The scientists hope the study will enable them to answer questions like these:

  • How do key measures, such as memory, language and reasoning, change over time as we age?
  • How do our lifestyle choices, including our exercise habits and diet, affect our risk of dementia?
  • What role do genetics play in the ageing brain? How do they affect how our brain’s function and what is their influence on development of dementia?
  • What are the early signs of dementia and how can they be distinguished from normal ageing?
  • What approaches can be delivered online to influence the ageing process and the development of dementia?

To help answer the genetics questions, participants will provide a sample of their DNA using a simple at-home kit.

It was quite exciting, setting up my user account on the PROTECT website, then working through the questionnaires, which were not onerous to complete. If you want, you can choose to nominate an “informant” – a friend or family member who knows you well – who will also be asked questions about your memory and whether they think it is changing.

Who can sign up to Join Dementia Research?

To take part in the study, there are three basic inclusion criteria:

  • You need to be over 50.
  • You must be resident in the United Kingdom.
  • You must not have been diagnosed with dementia.

Apart from these factors, and once you’ve gone through the initial account set up, you really just need to be willing to undertake the annual assessments. These simple requirements make this an ideal study for many people to take part in, especially as there are no clinic visits involved.

My colleague on the Infoline, Robin Brisbourne, explained recently on this blog why there may be fewer studies available for those without a diagnosis of dementia or memory problems, and/or younger than 65. The PROTECT study is a great example of a study that some people in these categories can get involved in straight away.

Infoline-CompnumberIf you are one of the lucky ones who has so far not been affected by dementia among your friends and family, it has probably never crossed your mind to get involved in this way. Before I joined Alzheimer’s Research UK it was the same for me, too. But now, having learned so much about this devastating condition, and having spoken to people whose lives have been touched immeasurably by Alzheimer’s and other diseases, I am pleased to be able to help in this small way. I’ve even talked about it on Facebook, and several friends have now signed up too.

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About the author

Claire Lucas

Team: Information services