Why is research into dementia important?

Every 3 minutes someone in the UK is diagnosed with dementia. There are numerous questions about diagnosis, treatments, prevention and best care for which there are no clear answers yet. Only research into dementia will help find these answers, and this research is reliant on people like you volunteering to take part and making a difference for the future.

There are several ways you can get involved in research, from simply learning more about it and helping to disseminate the information to others, helping to shape research by joining the Alzheimer’s Research Network to actually taking part in dementia studies through Join Dementia Research;

Care and cure magazine

Care and cure is the research magazine from Alzheimer’s Society. Explore their stories and read the most recent issue online.

https://www.alzheimers.org.uk/research/care-and-cure-magazine

Alzheimer’s Society Research Network

Research is not just for researchers. Your personal experience of dementia is invaluable. Join the Alzheimer’s Society Research Network to make research relevant and impactful for all those living with dementia today and in the future.

Who are our volunteers?

The Alzheimer’s Society Research Network volunteers all have personal experience of dementia – living with the condition or as a carer or former carer.

They have been working in partnership with the society and researchers across the UK for 20 years to ensure that research is relevant, credible and has an impact for everyone affected by dementia. 

How can you support dementia research?

Anyone with personal experience of dementia can volunteer.  These passionate and dedicated volunteers:

• Help us to make decisions about the research they fund 
• Monitor the progress of their projects
• Support researchers in every stage of their work from developing grant applications through to sharing the results of their work and much, much more.

If you have any queries about the Network, please email Ciara at Ciara.Lihou@alzheimers.org.uk or call 0207 423 3563.

Find out more at:

https://www.alzheimers.org.uk/research/play-your-part-research/our-research-network-volunteers

How can I take part in dementia research studies?

One way to find out about new studies looking for participants is to register with Join Dementia Research.

What is Join Dementia Research?

 Join Dementia Research is a service which allows people to register their interest in national dementia research. It helps people with dementia, their carers, or anyone interested in dementia research to be matched to studies. Once registered, your details will be stored securely, and will be regularly checked to see if you match to studies. This will tell you about studies all across the UK.

By registering, am I committing myself to research?

No. Once you have registered your interest, your details will be regularly checked against appropriate studies. If a match is found, you will then be contacted by the appropriate research team. Information will be provided to you by the research team of that study, and you will have the opportunity to ask the researchers as many questions as you like before deciding whether or not to take part. If you decide not to take part, it will not affect your care or eligibility for future studies. You can also request to be removed from Join Dementia Research at any time.

You may be asked to travel to the University or Research Centre conducting the research or they may visit you at home or meet you somewhere local to your home. If you are asked to travel to take part in research they would almost always pay for your expenses.

Some research studies will comprise an online survey or questionnaire. Normally they will also have a way to provide paper copes to you if this is not feasible.

Details of how you take part will normally be clearly explained in the description of the study. If at any time you find participation is causing you problems or distress you have the option of dropping out without having to explain why (although if you do feel able to share why you wish to withdraw it will help the researcher to understand how to make their projects easier for participants to take part).

 What sort of research could I be volunteering for?

Join Dementia Research is designed to match people to appropriate research studies using their personal information. Current research ranges from clinical studies of new treatments to surveys aiming to improve quality of life for people with dementia and their carers.

When you join up you can normally set preferences about the type of research, whether you are happy to travel etc.

Who can register with Join Dementia Research?

Anyone, with or without dementia, can register their interest as a volunteer. Volunteers must be over 18 years old.

How will registering benefit me?

• Join Dementia Research will help you learn more about dementia research in your local area or nationally.
• It is an easy way to let researchers know that you would like to take part in a study.
• Registering gets you a step closer to taking part in a study. If you do take part in a study, you will have the satisfaction of knowing you could contribute to future insights into dementia and its causes as well as early diagnosis, better treatment and quality of care.

How do I sign up?

You can sign up to ‘Join Dementia Research’ online, by phone or by post.

 www.joindementiaresearch.nihr.ac.uk

You can join by contacting one of the following charities:

Alzheimer’s Research UK: 03001115111

Alzheimer’s Society: 03002221122

Or you can write to:

c/o NIHR Clinical Research Network Coordinating Centre

Minerva House, 5 Montague Close, LONDON, SE1 9BB

Another alternative for research within Hampshire is;

 The Memory Assessment & Research Centre – MARC

MARC is an internationally-renowned and award-winning research centre for clinical trials into dementia, mild cognitive impairment and memory problems.

MARC was originally established by Dr. David Wilkinson at Moorgreen Hospital over 30 years ago. MARC now have two co-directors; Professor Clive Holmes (Professor of Biological Psychiatry at University of Southampton) is the director of academic research at MARC and Dr. Brady McFarlane (Consultant Psychiatrist in Older People’s Mental Health) is director of commercial trials at MARC. The MARC team is multi-disciplinary, including: academics, consultants, research nurses, pharmacy, health psychologist, research assistants and admin.

MARC conduct various pharmaceutical trials, academic studies and observational trials to learn more about how to diagnose, treat, cure and prevent dementia.

MARC have been involved and collaborated in a variety of trials over the years that have changed and developed our understanding of dementia. MARC were involved with the original trials into all of the current treatment options that are prescribed to people with dementia, including: Donepezil, Memantine, Galantamine & Rivastigmine. MARC have also collaborated on a number of trials that have changed our understanding of dementia.

You can find details of the studies they are currently running on their website.

MARC also offer a number of services alongside the clinical research including the ‘Friends of MARC’ initiative (patient and public advisory and involvement), education sessions about research and current directions of dementia trials, and support to students.

To find out more about our MARCs work check out their website:

https://www.southernhealth.nhs.uk/services/research/marc/

or give them a call: tel. 02380 475206.