New research to provide virtual support for people with rare dementias

A new project to create an online support network for people with young onset and rare dementias is one of four research projects funded as part of a £15 million initiative on research to improve the lives of people living with dementia.

Between 5% and 15% of people living with dementia receive a diagnosis of a young onset or rare dementia, such as frontotemporal dementia or posterior cortical atrophy. Many people affected by these types of dementias are not able to meet others in a similar situation for practical and emotional support because there aren’t people with the same type of dementia living locally.

Researchers at UCL will lead a project to develop and evaluate a multicomponent support group for people living with young onset and rare dementias. Working with people living with dementia, Professor Sebastian Crutch and his team will develop an online support group that can be accessed anywhere by different dementia communities and by people in different locations. The project builds on face-to-face support group meetings that the research group runs around the country.

Prof Crutch, clinical and research neuropsychologist at the Dementia Research Centre, University College London, 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. The support groups grew initially out of our local London clinic, but 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 dementias support group in 2012 when her late husband Noel was diagnosed with posterior cortical atrophy. She said: “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.”

The project comes as part of an Economic and Social Research Council (ESRC) announcement of £15 million of funding in collaboration with the National Institute for Health Research (NIHR) for the ESRC-NIHR Dementia Research Initiative 2018. The initiative has funded four projects that will run for five years and start in January 2019.

Among the projects funded, Professor Sube Banerjee at Brighton and Sussex Medical School and his colleagues will address inequalities in service use and outcomes for people with dementia, focusing on self-funders of care, older people of black Caribbean and South Asian heritage, and the older LGBTQ+ population. They’ll also look into the benefits and harms of earlier and later diagnosis of dementia.

Of the two further projects at UCL, Professor Claudia Cooper and her team will investigate how lifestyle, behaviour change and technology could prevent dementia in people at risk. Dr Elizabeth Sampson and colleagues will co-design and pilot a new model of palliative care for dementia, to ensure that people at the end of their lives receive the right care at the right time in the right place.

There are 850,000 people with dementia in the UK, with numbers set to rise to over 1 million by 2025. An estimated 670,000 people in the UK are acting as primary carers for people with dementia.

The ESRC-NIHR Dementia Research Initiative was launched to boost social science research in dementia, with the goal of creating a step change in social science funding of dementia from small projects to a critical mass of expertise. The 2018 funding follows an earlier 2012 joint initiative that provided £20 million for six research projects on dementia interventions and care. The projects have involved people with lived experience of dementia as co-researchers, advisors and participants, and have developed social science methodology and capacity in dementia research.

Professor Jennifer Rubin, ESRC Executive Chair, said: “I am very pleased that ESRC is collaborating again with the NIHR to fund research that will make a real difference to the lives of people living with dementia and their carers. The four funded projects will be national and international focal points for social science research in the field of dementia and will deliver UK-wide benefits for people living at different stages of dementia and with both the more common and rarer types of dementias.”

Minister for Care Caroline Dinenage MP said: “This research collaboration unites clinical expertise with an understanding of the social context of dementia to trial innovative approaches to care and support, from online support groups that can provide a lifeline to people with rare forms of dementia, to a prevention programme that targets lifestyle and behavioural risks. To make this the best country in the world to live with dementia, it’s crucial we are at the forefront of cutting edge dementia research like this, improving how we support people living with dementia to enjoy the best quality of life possible.”

The four projects funded by the ESRC-NIHR Dementia Research Initiative 2018 are:

• The impact of multicomponent support groups for those living with rare dementias. University College London, Bangor University, Nipissing University and Canterbury Christ Church University.
• DETERMIND: Determinants of quality of life, care and costs, and consequences of Inequalities in people with Dementia and their family carers. University of Sussex, London School of Economics (LSE), Kings College London (KCL), Newcastle University, University of York and University of Cambridge.
• The APPLE Tree programme:  Active Prevention in People at risk of dementia through lifestyle, behaviour change and technology to build resilience. UCL, University of New South Wales, University of Michigan, University of East Anglia, University of Exeter, North East London NHS Foundation Trust and INSERM (Institut national de la santé et de la recherche médicale).
• Empowering Better End of life Dementia Care (EMBED-Care Programme). UCL, KCL.