Dementia Research Centre


RDS Impact Study

Help us improve support for rare dementias

Rare Dementia Support (RDS) is now inviting participants to take part in The Impact Study, the largest research project of its kind, investigating the impact of support groups for people affected by rare dementias.

The aim of our research is to explore the impact of support on people living with, at-risk, or alongside a person with rare dementias. If you formerly supported a person living with a dementia, we would be delighted to hear from you too.

Take part from the comfort of your own home – all of our research is currently done remotely. For most of our research, you will need a smart device (smartphone/computer/tablet) but it may be possible to take part using just your landline or mobile phone.

Person on laptop at home

This is the world’s largest study looking at support groups. This means we have a number of small projects that make up the bigger study. We have grouped these projects together in a ‘menu’ for you to choose from. You can choose to take part in one or more of these smaller projects if you decide you would like to be involved. You can view the menu here, or have a look at what specific activities are coming up below.

Get involved

If you are interested in talking to our researchers about getting involved in any of the following RDS Impact research activities, please let us know on research@raredementiasupport.org.

RDS Impact Winter/Spring 2022

If you live with, or currently/formerly care for someone with a rare dementia:

Tell us about your experience 

A member of our research team would ask you a variety of questions about your experience living with or alongside a person with a rare dementia. Most of these questions require short answers, such as choosing a number from 1-10 on a scale. Other questions are open-ended, giving you the chance to tell us more. These conversations would happen either on a 1:1 basis, or with a close family member or friend present if preferred.

Do you want to help test online support for families and supporters of people with FTD, PCA and PPA? 

We are developing an online programme for families and supporters of people with Frontotemporal dementia (FTD), Primary Progressive Aphasia (PPA) or Posterior Cortical Atrophy (PCA). We are inviting you to help us test how easy it is to use and whether it can help people to provide better support, both for you as someone living alongside a person with one of these diagnoses, and for the person with the diagnosis themselves. We will ask you to fill in some questionnaires and you will receive either our programme or alternative support, which you can complete at your own pace over seven weeks.

Person typing on laptop

If you live with a dementia:

Help us to design new ways to measure ‘resilience’ in rarer dementias

What helps people manage or ‘do okay’? We are developing a measure of resilience that is specifically for people living with a rare dementia, because none currently exist. This is important because it will allow researchers to measure changes in resilience in response to health, psychological and social care services or interventions. The next step in this work is to discuss a set of questions with people living with rare dementias.

Person on video call

The Impact study study started in 2019, and will be running until 2024. It is a collaboration between University College London (UCL), Bangor University and Nipissing University in Canada, led by Professor Sebastian Crutch from the Dementia Research Centre, UCL. We are joint-funded by the Economic & Social Research Council (ESRC) and National Institute for Health Research (NIHR). 

You can hear researchers Emilie Brotherhood and Dr Emma Harding introducing the project on this podcast recorded as part of the Dementia Researcher podcast series.