DementiaRoadmap

Helping primary care to support people with dementia

Join Dementia Research

February 27 2015

Join Dementia Research aims to accelerate the pace of dementia research by allowing people with and without dementia to register their interest in studies, helping researchers find the right participants at the right time.

Visit www.joindementiaresearch.nihr.ac.uk to find out more and sign up.

What is ‘Join dementia research’?

It’s a ground-breaking new online and telephone service that makes it easier for people to register their interest in volunteering for dementia research studies. Currently, less than 5% of those living with dementia are taking part in research. It’s crucial that we get more people with and without dementia involved, so we can make a real difference to improving their lives and providing the right support and advice they need.

Who has developed the service?

The service is a collaboration between the National Institute for Health Research (NIHR), Alzheimer’s Research UK, Alzheimer’s Society and Alzheimer Scotland, and has been funded by the Department of Health.

Who can get involved?

Anyone, with or without dementia, can register as a volunteer or sign-up for someone else, providing that you have their consent. You must be over 18 years old.

How can people get involved?

There are three ways of registering for the service:

  1. Visiting joindementiaresearch.nihr.ac.uk
  2. Contacting one of the charities’ helplines: Alzheimer’s Research UK: 0300 111 5 111 and Alzheimer’s Society: 0300 222 1122
  3. Completing a postal application form. You can order materials at formara.co.uk/jdr

What are the benefits to your patients?

  • It can provide people with hope and optimism. For many it can make a real difference to feel they’re in control and doing something.
  • Lots of people want to take part in research, but don’t know where to go to find out about it. Our website guides them through a quick registration. It provides the opportunity for people to see what studies are available, but they DO NOT have to take part in any studies.
  • There’s a whole range of research studies available – from clinical trials, to testing new treatments, to attending support groups and completing surveys.

What can you do to help?

  • Tell your patients about us! We can start working with them straight away – treatment is often more effective with those in the early stages of the disease, with mild to moderate dementia.
  • Start using the ‘Join dementia research’ website. There’s a whole section under ‘For professionals’ that has lots of useful information. You can find out what research is happening in your area, get in touch with researchers and help ensure that these studies are a success.
  • Promote the service in your surgery. We’ve put together lots of handy materials that can help you spread the word. You can order them free of charge at http://weborder.formara.co.uk/jdr.

The video below follows Morag, who was recently diagnosed with a form of Alzheimer’s disease, and her husband John as they embark on their journey into research.

The latest tweets from Join Dementia Research are shown below.


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