Optimising Online Peer Support for People with Young Onset Dementia

Abstract

People with Young Onset Dementia (YOD) can be hesitant to engage with online peer support. This work aims to explore (1) why people are hesitant to engage in online peer support, (2) how to get more people involved in online peer support, and (3) what makes online peer support work well. Nine interviews with people with YOD were conducted on MS Teams. Participants were recruited through purposive sampling. Data were analysed thematically. Reasons for being hesitant to engage with online peer support include being unsure what to expect and concerns about seeing others in more advanced stages of dementia. Additionally, it can be difficult to identify groups that suit one’s needs and interests. Group facilitators of online peer support groups should provide a detailed description of their group so that people can better assess whether the group would suit them. The insights obtained from this study will be used to develop a Best Practice Guidance on online peer support for people with YOD. Moreover, the findings can be useful for further research exploring how to support people with dementia in general in accessing online health and social care services.

A systematic review of digital access to post‐diagnostic health and social care services for dementia

“…The barriers to accessing online peer support tended to be personal or systemic, with expectations of what is expected of them in the group, and making sure that the group would give them what they need, both reasons that people didn't engage. As with many of the studies highlighted in this systematic review, Gerritzen et al 90 also noted the advantages of online groups compared to in-personspecifically not having to travel and the greater potential to develop ad hoc relationships outside of support group meetings. Rapley et al 91 also demonstrated positive responses when exploring the use of videoconferencing for peer support among family carers of people with rarer dementia.…”

“…Although these more recently published papers would not have altered the overall themes or findings, it is necessary to provide some detail of these notable studies in the topic area. Gerritzen et al 90 conducted qualitative interviews with people with YOD, to understand why people may be hesitant to use online peer support groups, and how to overcome these hesitancies and improve engagement.…”

Peer Support for Caregivers of People Living with Posterior Cortical Atrophy in Melbourne, Australia: A Feasibility Study

“…In-person support groups have been shown to be beneficial in fostering the formation of friendships and a support network and allow for physical connection and support, which was noted to be missing by some participants using online-based services [13,30]. In-person support groups are also beneficial, as participants may not feel like they are speaking to a real person if participating in an online group format [31,32]. Furthermore, there may be technological challenges or barriers, such as accessing the internet and navigating technology, particularly for those who are visually impaired, often making in-person support groups preferable [31,33].…”

“…In-person support groups are also beneficial, as participants may not feel like they are speaking to a real person if participating in an online group format [31,32]. Furthermore, there may be technological challenges or barriers, such as accessing the internet and navigating technology, particularly for those who are visually impaired, often making in-person support groups preferable [31,33]. Alternatively, online support groups can also be helpful, as they may be more accessible for people with dementia and their caregivers, who may feel more comfortable and less vulnerable in their home setting [30].…”