Needs of Young People with Dementia
Research type
Research Study
Full title
Needs of Young People with Dementia
IRAS ID
244379
Contact name
Orii McDermott
Contact email
Sponsor organisation
University of Nottingham
Duration of Study in the UK
0 years, 7 months, 31 days
Research summary
People with Young Onset Dementia (YOD) have different needs and preferences to older people with dementia. However, age appropriate specialised services and support are not always available and many people with YOD do not necessarily wish to use ‘dementia services’. We aim to develop a well-informed picture of the needs, unmet needs and preferences of people with YOD. Insights generated from this study will help identify key components to support self-management of people with YOD, and we aim to develop a research proposal for a self-management programme incorporating peer-support at a later stage. The study consists of three parts: 1) interviews and a focus group with around 25 people with YOD, 2) a wider online and paper survey, and 3) a consensus meeting. Focus groups and interviews will be conducted to obtain views and experiences of people with YOD. Key themes identified from the qualitative analysis will be used to develop survey items. A wider online survey with people with YOD will be conducted. The survey will be analysed statistically as well as qualitatively. Participants with YOD will be involved in interpreting the qualitative data. A consensus meeting with people with YOD, their supporters and dementia specialists at the final stage of this study aims to consolidate the key findings on met and unmet needs and preferences of people with YOD.
REC name
North East - Newcastle & North Tyneside 2 Research Ethics Committee
REC reference
18/NE/0277
Date of REC Opinion
9 Oct 2018
REC opinion
Further Information Favourable Opinion