Online peer support for people with Young Onset Dementia
Research type
Research Study
Full title
An analysis of the use of online peer support by people with Young Onset Dementia
IRAS ID
291425
Contact name
Martin Orrell
Contact email
Sponsor organisation
University of Nottingham
Duration of Study in the UK
1 years, 5 months, 30 days
Research summary
When the onset of dementia is below the age of 65 it can be defined as Young Onset Dementia (YOD). YOD is less common than dementia at older age, and as a result people with YOD often experience stigma. This increases the risk for social isolation and loneliness. Research shows that peer support can be beneficial and enjoyable for people with YOD, as it offers an opportunity to receive and provide support from and to others in a similar situation. However, because dementia is less common at a younger age, people with YOD often face difficulties in accessing age-appropriate support and in connecting with peers in their own physical environment. Online peer support could be a potential solution, as it takes away geographical barriers and allows people from different areas to connect. Research demonstrates that online peer support can be beneficial for people with chronic and neurodegenerative conditions. Research into the use of online support by people with dementia is increasing, however, an understanding of how online peer support can be meaningful for people with YOD remains limited. Therefore,this study aims to explore the personal experiences of people with YOD with online peer support and to identify successful elements that make online peer support meaningful. This will be done through two online surveys, individual interviews, and focus groups.
Additionally, this study also aims to get more insight into the experiences of facilitators/ moderators of online per support for people with YOD and to learn more about potential challenges and how to overcome these. While previous research has been conducted into the experiences of facilitators/ moderators of a variety of online health communities , to our knowledge this type of research has not been conducted specifically for facilitators of online support for people with dementia. This will be done through individual interviews.
REC name
London - Bromley Research Ethics Committee
REC reference
21/LO/0248
Date of REC Opinion
26 Apr 2021
REC opinion
Further Information Favourable Opinion