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Join Dementia Research is a nationwide online and telephone service which helps people take part in research studies. It will accelerate the pace of dementia research by connecting people with and without dementia with researchers.

Anyone aged 18 years or over can sign up themselves, or on behalf of someone else, either by:

  • registering online at www.joindementiaresearch.nihr.ac.uk
  • contacting the helplines of Alzheimer Scotland (0808 808 3000 – free to call, open 24 hours a day, 365 days a year) or Alzheimer’s Research UK (0300 111 5 111).

By signing up to the service, people give permission for researchers to contact them with details of studies in their area that match their profile. People can then decide if they would like to participate in those studies on a case-by-case basis. By registering, people do not have to take part in any studies and can opt-out at any time.

Minister for Sport, Health Improvement and Mental Health, Jamie Hepburn, said: “The Scottish Government is delighted to support the Join Dementia Research initiative, which will help recruit more volunteers into research. Through The Chief Scientist Office, we continue to provide funding of £475,000 per year for the Scottish Dementia Clinical Research Network. This complements our wider national work to further improve dementia diagnosis rates and improve care in all settings. As part of this, we are supporting the delivery of our world-leading post-diagnostic support guarantee for everyone newly diagnosed with the illness.”

Professor Peter Connelly, Director of the SDCRN, said: “Join Dementia Research (JDR) is an exciting opportunity to provide lay people and researchers in Scotland better access to high-quality studies across the full range of dementia research; from possible prevention through to improvements in how the treatment of more advanced stages of illness can be cared for. It bridges an important gap between SHARE (with its wide population appeal) and the very detailed Scottish Dementia Research Interest Register, both of which have been well-supported by the Scottish Government. We welcome its introduction and we should grasp the opportunity for involvement with both hands.”

Patient & Public Involvement

People with dementia, their carers and the public also have the opportunity to get directly involved in the network and help individual researchers develop their ideas.

People with dementia, their carers and the public can be involved in research studies and also help shape the direction of the network. You can do this by attending local Focus Groups, reviewing Scientific papers, helping us plan our conferences or reviewing research project applications before they are submitted for funding. This can improve the quality of the research study and help secure the necessary funding.

If you want to be involved in helping to improve dementia research in Scotland please download this form and return it to our us.

You can find out more about Patient & Public Involvement by viewing this Youtube video.

For researchers, we already have a team of people with dementia, or carers of people with dementia, willing to help you with your research in a variety of ways. Some are willing to review study protocols, comment on your research questionnaires or give you a lay opinion of your research question or Patient Information Sheet.

Having People with dementia and their carers involved in your study design can improve the quality of your research, check that the research question is relevant to patients and provide feedback on the clarity of your lay summary or plans for public involvement during the study.

If you are a dementia researcher and you would like some public input into your study please contact us on 07813 993361 or Tay-UHB.SDCRNteam@nhs.net.