Online peer support: views and experiences of people with young onset dementia (YOD)

Gerritzen, Esther Vera; McDermott, Orii; Orrell, Martin

doi:10.1080/13607863.2023.2205833

Cited by 6 publications

(6 citation statements)

References 40 publications

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“…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].…”

Section: Discussionmentioning

confidence: 99%

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

Mitchell,

Kelso,

Paynter

et al. 2024

IJERPH

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Posterior Cortical Atrophy (PCA) is a rare form of young-onset dementia that causes early visuospatial and visuoperceptual deficits. The symptom profile of Posterior Cortical Atrophy leads to very specific care needs for those affected, who often rely on informal caregivers (including friends and family). Rare dementia support groups can be useful for both patients and their caregivers to assist with knowledge sharing, psychoeducation, and the provision of psychosocial support. Despite this, few such support groups exist. The purpose of this study was to examine a PCA support group for caregivers of individuals living with PCA. We held a structured psychoeducation support group comprised of four sessions with the aim being to provide education, strategies for the management of the disease, and peer support. Caregivers’ mental health and quality of life were assessed. The results of our study showed that support group participation was a positive experience and assisted with increasing the knowledge of caregivers and fostering social connections. We suggest that peer support groups may be beneficial for both people living with PCA and their caregivers. We recommend that future quantitative and qualitative research is conducted to further assess health-promotion benefits to people living with PCA and their caregivers, and to assess their development and implementation in different contexts.

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Section: Discussionmentioning

confidence: 99%

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

Mitchell,

Kelso,

Paynter

et al. 2024

IJERPH

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“…Participants were recruited through the online survey [19]. Out of 69 respondents, 56 people expressed interest in being involved in further parts of the study.…”

Section: Recruitment and Eligibility Criteriamentioning

confidence: 99%

“…The interviews were semi-structured using a pre-defined interview guide (Table 1). The interview guide was informed by the findings from the survey [19]. The interview guide was sent to the participants in advance, so that they could prepare if they wanted to.…”

Section: Interview Proceduresmentioning

confidence: 99%

“…Research shows that there are many positives about online peer support. People can join from the comfort of their own home, it offers an opportunity to stay socially connected during the COVID-19 pandemic [12,18], and the wide variety of platforms that can be used for online peer support can tailor towards different needs and preferences [19]. However, our recent online survey showed that many people with YOD were hesitant to engage with online peer support [19].…”

Section: Introductionmentioning

confidence: 96%

“…People can join from the comfort of their own home, it offers an opportunity to stay socially connected during the COVID-19 pandemic [12,18], and the wide variety of platforms that can be used for online peer support can tailor towards different needs and preferences [19]. However, our recent online survey showed that many people with YOD were hesitant to engage with online peer support [19]. Furthermore, symptoms such as speech and language difficulties or vision impairments, which are more common in younger people with a rare form of dementia, may make it more challenging for people to engage with technology or engage in online communication [20].…”

Section: Introductionmentioning

confidence: 99%

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Optimising Online Peer Support for People with Young Onset Dementia

Gerritzen,

Orrell,

McDermott

2024

IJERPH

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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.

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Adherence to Online Interventions for Family Caregivers of People With Dementia: A Meta-Analysis and Systematic Review

Atefi,

Koh,

Kohl

et al. 2024

The American Journal of Geriatric Psychiatry

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Online peer support: views and experiences of people with young onset dementia (YOD)

Cited by 6 publications

References 40 publications

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

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

Optimising Online Peer Support for People with Young Onset Dementia

Adherence to Online Interventions for Family Caregivers of People With Dementia: A Meta-Analysis and Systematic Review

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