Salford Institute for Dementia, Salford City Council announce pioneering research on young onset dementia

A new three year action and research study into living well with young onset dementia has been announced by the University of Salford’s Institute for Dementia and Salford City Council.

(L – R): Dr Tracey Williamson, Reader in Public Involvement, University of Salford; Professor Ian Stewart, Salford City Mayor; Lynda Needham, Chief Executive, the Booth Charities; Luisa Rabanal, Research Fellow, University of Salford; Andy Walker, Development Worker, University of Salford.

The project funded by a significant grant from the Booth Charities will be run in partnership with people in Salford who have experience of young onset dementia, both first-hand and as informal carers or spouses. Users and staff of the Humphrey Booth Resource Centre in Swinton and colleagues from other services, sectors and support groups will also be part of the project team.

Despite acknowledgment that developing a dementia in midlife is associated with specific challenges, little is known about the needs of younger people with dementia, defined as those who receive a diagnosis before the age of 65. The aim of this joint action and research project is to gain a greater knowledge of how younger people can live well with dementia.

Currently, due to the rarity and range of types of young onset dementia, people often end up on a protracted and lonely path to diagnosis. Support for younger people and their families is not as readily available as it is for older people who develop dementia. Younger people with dementia are also more likely to be juggling a complex set of commitments including work, being parents, caring for older relatives and major financial commitments.

The project will run a series of individual and small group meetings across Salford to gain real-life insights into young onset dementia. Information from these groups will be fed into a main stakeholder advisory group made up people with experience of young onset dementia. The study is being overseen by a Steering Group comprising a range of service providers and representatives from different sectors. The Steering Group is chaired by Dr Anna Richardson from Salford Royal NHS Foundation Trust.

The project aims to find practical solutions which can be developed during the lifespan of the three year project. The research team comprises a Research Fellow Luisa Rabanal and a Development Worker Andy Walker who together will ensure findings impact on services. The team will look at where existing support can be adjusted or enhanced to support people with young onset dementia more effectively. The project hopes to explore the potential of cutting edge assistive technology to support people with young onset dementia and their carers.

Salford City Mayor Ian Stewart, added:

Dementia is one of the greatest public health challenges of our times. I’m proud that as a city, Salford is facing that challenge head on.

The Council, University and partners are working together to make Salford the most Dementia friendly City in the UK and this pioneering study into young onset dementia care is going to be a big part of that.

Currently, too little is known about young onset dementia and too many people with the condition are falling through the cracks in our health and social care services. This project will make us able, as a City, to help younger people live well with dementia.

Speaking after the study was announced Professor Maggie Pearson, Director of the Salford Institute for Dementia, said:

Despite awareness of dementia now being at an all-time high, we still know very little about the effects of dementia on those under 65.

Care for those with dementia is improving, but that lack of knowledge about young onset dementia means that frequently younger people who develop the condition do not receive the same levels of care as older people. This study aims to change that.

We want to understand the challenges that younger people face when diagnosed with dementia and help people to overcome them. Crucially, we want to hear first-hand accounts, from younger people living with dementia, their carers and the service providers that support them. We want to learn from them and that’s why this project will be led by them.