£3.65m Rare Dementia Support Impact Study begins

A £3.65m research project carrying out the first major study of the value of support groups for people living with or caring for someone with a rare form of dementia is now underway. The five-year Rare Dementia Support (RDS) Impact Study, a collaboration between University College London (UCL), Bangor University and Nipissing University in Canada, is led by Professor Sebastian Crutch from the Dementia Research Centre, UCL.

We understand that living with a rare type of dementia, or supporting someone living with a rare dementia - at all stages - means that your needs and challenges are different to people who are diagnosed with memory-led Alzheimer’s disease in later life. This project will help researchers to understand these needs and challenges better, to provide improved, streamlined and individual support for you, your family and friends.

This research study would not be possible without your generosity and commitment to participating in our research. We have already learned so much from many of you generously volunteering your time to answer questions and provide feedback. There is still a lot that researchers do not know about what works when providing support for a rare dementia, and what could be improved. As part of this research study, we are committed to having over 1000 conversations  with support group members across the UK and Canada over the course of the study. These conversations will help researchers study the benefits of meeting other people living with a similar rare dementia, and exactly how sharing practical and emotional support can help. We will then use this information to develop new ways of delivering support that are rigorously tested and evaluated to ensure they are providing the maximum benefit.

Over the next couple of months, we will be getting in touch with our support group members to provide updates on the study, and letting members know how they can be involved in the research. For updates on the RDS Impact Study, please follow us on Twitter @RDS_ImpactStudy.


This research study will not replace the service Rare Dementia Support already provides. If you are living with a diagnosis of a rare dementia or supporting someone with a rare form of dementia, and wish to become a member to receive support, information about meetings, and updates on research studies, please sign up here and our team will be in touch.

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