We are delighted to announce new funding from the ESRC and NIHR to create a virtual support network for people living with rare dementias.
Between 5% and 15% of people living with dementia receive a diagnosis of a young onset or rare dementia, such as Frontotemporal Dementia (FTD) or Posterior Cortical Atrophy (PCA). Many people affected by these types of dementias are not able to get the practical and emotional support they need as there is much less awareness about the unique challenges they face (i.e. perception or language problems rather than memory), and it is more difficult to find people living nearby who are experiencing the same type of dementia.
UCL researchers, led by Created Out of Mind Director and neuropsychologist Professor Sebastian Crutch, will lead a project to develop and evaluate an online support group for people living with these rarer dementias. It will be accessible to different dementia communities, and from anywhere. Prof Crutch said:
“We’re thrilled that the ESRC-NIHR have agreed to fund this work looking at the value of support groups by, with and for people with young onset and rare dementias. We have a vision that everyone living with, or at risk of living with, a rare form of dementia has access to specialist information, support and contact with others affected by similar conditions.”
Roberta McKee-Jackson joined a Rare Dementia Support group in 2012 when her late husband Noel was diagnosed with Posterior Cortical Atrophy and is now a regional facilitator. She said of the new project:
“Many support group members are located in remote areas and unable to attend meetings in London, which can be very limiting. So many carers in particular feel very lost, are always searching for local support, and want to share knowledge with others in a similar situation. The opportunity for more access to online support, research, and knowledge sharing would be incredible. The possibilities from the ESRC-NIHR funding award for carers and people living with a rare form of dementia are amazing.”
This project builds on face-to-face support group meetings led by the UCL Dementia Research Centre and Rare Dementia Support, and held all around the country. Over the past two years these support groups have been held in The Hub at Wellcome Collection as part of the Created Out of Mind residency - a collaborative space where people can get much needed information and support from people who understand their experiences, and can share knowledge and stories.
We have seen first-hand the exceptional value these groups have had - for those living with dementias and their loved ones - but also for the communities of researchers, practitioners and care professionals that work with them.
We are thrilled that the ESRC-NIHR grant has enabled this important work to continue and be developed so that more people may benefit.
This project is one of four funded under the joint Economic and Social Research Council (ESRC) and National Institutes for Health Research (NIHR) £15 million Dementia Research Initiative 2018, which is committed to improving the lives of people living with dementia across the UK. University College London (UCL) is working in collaboration with Bangor University, Nipissing University and Canterbury Christ Church University