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