Development of Best Practice Guidance on Online Peer Support for People With Young Onset Dementia: Protocol for a Mixed Methods Study

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

doi:10.2196/38379

Cited by 5 publications

(4 citation statements)

References 33 publications

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“…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‐person—specifically not having to travel and the greater potential to develop ad hoc relationships outside of support group meetings.…”

Section: Discussionmentioning

confidence: 73%

“…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.…”

Section: Discussionmentioning

confidence: 99%

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

Watson,

Hanna,

Talbot

et al. 2024

Int J Geriat Psychiatry

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ObjectivesFor many people with dementia and unpaid carers, using technology for care and support has become essential. Rapid proliferation of technology highlights the need to understand digital access to health and social care services for dementia. This mixed‐methods systematic review aims to explore digital access to health and social care services for dementia, from the perspective of people with dementia and unpaid carers.MethodsNine electronic databases were searched in May 2023 for qualitative, quantitative, or mixed‐method studies, published in English or German, focused on experiences of using technology‐delivered health and social care services for people with dementia and unpaid carers. After removal of duplicates and screening, 44 empirical papers were included.ResultsFrom the 44 studies, findings were grouped into five categories, highlighting experiences for people with dementia and unpaid carers: (1) Adapting to technology, (2) Inequalities and variations in outcomes, (3) Impact on caring, (4) Impact on health, and (5) Impact on relationships. Proliferation of technology in care access emphasised the need for quick adaptation to technology and examination of its impact. The impact of such service delivery has evidenced mixed findings. There were improvements in the health and wellbeing of people with dementia and unpaid carers, and benefits for their dyadic relationship. However, using technology for health and social care access is not always possible and is often reliant on unpaid carers for support. Lower tech‐literacy, lack of equipment or money to buy equipment and poor internet connection can impact the potential for positive outcomes.ConclusionsTechnology can bring great benefits: social inclusion, improved service access and care. However, using technology in service delivery in dementia needs careful thought. Professionals and service providers need to be cognizant of the complex nature of dementia, and the benefits and challenges of hybrid service delivery.

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Section: Discussionmentioning

confidence: 73%

Section: Discussionmentioning

confidence: 99%

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

Watson,

Hanna,

Talbot

et al. 2024

Int J Geriat Psychiatry

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“…Interventions and programs for people with YOD and their care-givers need to positive-affirming, be something that they could do together, especially in learning to manage stressors, to learn adaptive coping mechanisms and assist in the changes within their relationship and roles [54, 68,69,78,79]. Various intervention protocols which were dyadic focused have been published, combining music therapy and cognitive behaviour therapy [80] and online support programs [81,82].…”

Section: Management Of Young-onset Dementiamentioning

confidence: 99%

Recent research advances in young-onset dementia

Loi

Pijnenburg

Velakoulis

2022

Current Opinion in Psychiatry

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Purpose of reviewYoung-onset dementia (YOD) refers to a dementia for which symptom onset occurs below the age of 65. This review summarizes the recent literature in this area, focusing on updates in epidemiology, diagnosis and service provision. Recent findingsIn the last year, internationally, the prevalence of YOD was reported as 119 per 100 000, but this may vary according to population types. Although the commonest causes of YOD are Alzheimer's disease (AD) and frontotemporal dementia (FTD), there is increasing recognition that YOD is diagnostically and phenotypically broader than AD and FTD. YOD may be due to many other diseases (e.g. Huntington's disease, vascular dementia) whereas accumulation of the same protein (e.g. amyloid protein) may lead to different phenotypes of Alzheimer's disease (such as posterior cortical atrophy and behavioural-variant/ frontal-variant AD). This heterogeneity of phenotypic presentation is also seen in YOD due to known genetic mutations. Biomarkers such as plasma and cerebrospinal fluid proteins, neuroimaging and genetics have shown promise in the early identification of YOD as well as providing further understanding behind the overlap between psychiatric and neurodegenerative conditions occurring in younger people. The management of YOD needs to consider age-specific issues for younger people with dementia and their family networks together with better integration with other health services such as aged, disability and improved access to services and financial assistance.

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“…This work is part of a larger study which aims to develop best practice guidance on online peer support for people with young onset dementia. This study will use a variety of methods to gain insights into how people with young onset dementia use and experience different forms of online peer support, and what the potential barriers are ( Gerritzen et al, 2022 ). Until now, research on online peer support for people with dementia focusses on text-based platforms.…”

Section: Introductionmentioning

confidence: 99%

Peer support through video meetings: Experiences of people with young onset dementia

et al. 2022

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Background People with young onset dementia can experience stigmatization and social isolation. Peer support provides an opportunity for social connection and support. However, access to in-person peer support groups varies across the UK, and during the COVID-19 pandemic in-person peer support groups moved online. Objectives We explored the experiences of people with young onset dementia attending peer support meetings through online videoconferencing platforms, and identified barriers and facilitators. Methods A focus group study with existing peer support groups for people with young onset dementia that had their meetings online was conducted. Participants were people living with young onset dementia. Participants were recruited through convenience and purposeful sampling. Initial contact was made with the group facilitator to discuss the study purposes and assess eligibility of the group members. The data was analysed thematically by two independent researchers, using an inductive approach. Findings Four focus groups with UK-based peer support groups were conducted through the group’s usual platform, including 20 participants. Through online peer support people stayed connected during the pandemic. It provided opportunities to meet people from different places and be involved in research projects. People found it a convenient way of connecting with others without having to travel. However, some missed in-person interaction and digital exclusion and challenges to navigate different platforms were identified as barriers. Organisational skills of the facilitator and support with getting into meetings can help overcome these challenges. Conclusion Online platforms can make peer support more accessible for people with young onset dementia as it overcomes geographical barriers as well as barriers for those who feel uncomfortable attending an in-person group. Researchers and policy makers should explore how to implement and overcome barriers to online peer support, so that peer support is more widely accessible and clearly signposted to people with young onset dementia.

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Development of Best Practice Guidance on Online Peer Support for People With Young Onset Dementia: Protocol for a Mixed Methods Study

Cited by 5 publications

References 33 publications

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

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

Recent research advances in young-onset dementia

Peer support through video meetings: Experiences of people with young onset dementia

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