Online peer support for people with Young Onset Dementia: development of a best practice guidance
Introduction: Peer support can be very valuable for people with Young Onset Dementia (YOD) (diagnosis before the age of 65). People with YOD face unique challenges compared to older adults and often experience stigma. YOD can have a negative impact on someone’s sense of self, identity, and social ro...
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| Format: | Thesis (University of Nottingham only) |
| Language: | English English |
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2023
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| Online Access: | https://eprints.nottingham.ac.uk/74140/ |
| Summary: | Introduction: Peer support can be very valuable for people with Young Onset Dementia (YOD) (diagnosis before the age of 65). People with YOD face unique challenges compared to older adults and often experience stigma. YOD can have a negative impact on someone’s sense of self, identity, and social roles in the community. Peer support provides social opportunities where people experience mutual understanding and empathy because they are all experiencing similar challenges. People also exchange practical information on dementia and signpost support services. In the United Kingdom, availability of age-appropriate, in-person peer support services is inconsistent, and many people may miss out on the potential benefits. Online peer support could be a solution, as it overcomes geographical barriers and offers a variety of platforms and modes of communication. The aim of this thesis was to develop a Best Practice Guidance on online peer support for people with YOD, and specific guidelines for peer support facilitators.
Methods: This thesis followed the Medical Research Council (MRC) guidelines on complex interventions and focused on the development stage, including different sub-studies. First, a systematic literature study was conducted, followed by 4 focus groups, an online survey with 69 respondents, and 9 interviews. All participants were people living with YOD. Finally, participants, professionals, and researchers provided input on the Best Practice Guidance.
Findings: For many people with YOD (online) peer support is a lifeline and gives hope and a sense of purpose. Some were hesitant to engage in peer support, for example because they were anxious about seeing others in an advanced stage, or they did not know what to expect. Others were unaware of online peer support options and how they could get involved. This indicates a need for better advertisement and signposting. The Best Practice Guidance provides (1) people with YOD with information on what online peer support entails, (2) group facilitators with guidelines on how to optimise online peer support for people with YOD, and (3) healthcare professionals with an opportunity to signpost to online peer support. |
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