Living well with young onset dementia
Research type
Research Study
Full title
Living well with young onset dementia - Humphrey Booth Resource Centre as a hub of excellence in a system of support
IRAS ID
181965
Contact name
Tracey Williamson
Contact email
Sponsor organisation
University of Salford
Duration of Study in the UK
3 years, 0 months, 0 days
Research summary
Individuals living with young onset dementia (YOD), defined as those receiving a diagnosis before the age of 65 years, have rarely been involved in research and service development. Consequently, little is known about the needs and experiences of this population. Existing services remain tailored towards older people and may not meet the unique requirements of younger individuals. The implications of receiving a diagnosis of YOD are particularly severe, as people may be coping with many responsibilities including work, supporting children and/or older relatives and major financial commitments. In addition, people who develop dementia in midlife undergo a lengthy and agonising wait for diagnostic test results due to the rarity and range of types of the condition. Specialist services providing individuals with ongoing assessment and professional support at home and in day care remain scarce and patchy across the UK.\n\nThe proposed study is a landmark, three year collaborative project between the University of Salford’s Institute for Dementia (SiFD) and Salford City Council to explore the needs of people living with YOD in Salford. The study will take a participatory action research (PAR) approach to engage with a diverse group of people who can each bring their expertise through having YOD themselves or having experience of supporting people living with YOD. This means that younger people living with dementia, their families/friends/carers and existing support services will be involved in the study design, undertaking and management of the research through membership of Steering and Advisory Groups. Study participants will include up to 50 people affected by YOD, together with approx 25-35 staff from community service/support settings. The scope for evidence-based service developments to occur throughout the study in response to participants’ perspectives will be enhanced by the employment of a Development Worker to work alongside the research team.\n\n
REC name
North West - Preston Research Ethics Committee
REC reference
15/NW/0921
Date of REC Opinion
2 Dec 2015
REC opinion
Favourable Opinion