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

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

doi:10.1177/14713012221140468

Cited by 13 publications

(27 citation statements)

References 33 publications

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“…Results from several studies show that online technologies can have a positive impact on caregivers, for example, in terms of self-efficacy, stress levels, helplessness, or feelings of being supported ( Bateman et al, 2017 ; Gerritzen et al, 2023 ; Parkinson et al, 2018 ). The studies so far are too small and too heterogeneous to make definitive judgments on effectiveness.…”

Section: Resultsmentioning

confidence: 99%

A Qualitative Literature Search and Pilot Study of Online Support Groups for Patients With Dementia and Their Carers

Constantini,

Bliem,

Crepaz

et al. 2023

Gerontology and Geriatric Medicine

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The ever-growing group of people living with dementia (PLWD) and their relatives face great challenges. The Covid 19 pandemic has once again placed a particular challenge on this vulnerable group. What started a decade earlier with telephone-based support groups experienced a real push during the pandemic in the form of video-based self-help services. The aim of this qualitative literature search in MEDLINE, EMBASE, CINAHL, and PsycINFO with keywords related to online, support group, caregiver, and dementia was to collect the reported experiences by the end of 2022. Peer reviewed journal papers were included when published and written in English. After the joint decision of two reviewers, it was decided to only include studies that were published in Medline. The results of the literature search are compared with experiences of the participants in a presentation group that was transformed into an online group at the time of the COVID-19 pandemic via Zoom. In search yielded a total of 129 articles. 113 articles described different types of interventions, 30 of which had a randomized design. The qualitative literature search showed on the one hand a high interest in online support groups but on the other hand that the effectiveness and efficacy in randomized trials is much less clear. In addition, we investigated the assessments and experiences of the participants in a presentation group that was transformed into an online group at the time of the COVID-19 pandemic via Zoom. This study demonstrates that PLWD and carers on virtual group meetings can express significant emotive capacity and enhanced connectivity with one another despite a diagnosis of mild to moderate dementia. Further research on entry criteria, concerns about online support services in general and necessary support for use is essential to develop the time- and location-independent possibility of video-based online self-help into an important form of support for both PLWD and their caregivers as an additional support option independent of exceptional pandemic situations.

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Section: Resultsmentioning

confidence: 99%

A Qualitative Literature Search and Pilot Study of Online Support Groups for Patients With Dementia and Their Carers

Constantini,

Bliem,

Crepaz

et al. 2023

Gerontology and Geriatric Medicine

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“…The use of videoconferencing software peaked when public health restrictions were most restrictive, and may have been used as an interim to see one another when doing so in person was unsafe. Delivering services by videoconferencing software is likely to have engendered a steep learning curve, which may include adapting the content delivered 35,40,41 and identifying how to optimally facilitate engagement with people with dementia and unpaid carers 33,34 . Delivering services by videoconferencing software may be time effective 27 and, compared to the telephone, the format offers visual cues which may help foster a sense of connection with people with dementia and unpaid carers 33 .…”

Section: Discussionmentioning

confidence: 99%

“…'not the same' as in-person services, 34,36 and their preferences on how support is accessed needs to be considered.…”

Section: Satisfaction With Primary Service Deliverymentioning

confidence: 99%

“…35,[39][40][41] While the telephone was the most employed format, akin to other studies, we observed an increased reliance on the use of videoconferencing software during the pandemic. [33][34][35][36] The use of videoconferencing software peaked when public health restrictions were most restrictive, and may have been used as an interim to see one another when doing so in person was unsafe.…”

Section: Satisfaction With Primary Service Deliverymentioning

confidence: 99%

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Social support services for dementia during the COVID‐19 pandemic: A longitudinal survey exploring service adaptations in the United Kingdom

Caprioli

Giebel

Reilly

et al. 2023

Health Expectations

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Objectives To understand how the delivery of dementia‐related social support services across the UK adapted during the pandemic. Methods We devised a two‐part online and telephone longitudinal survey. Providers participated between March and June 2021, and again 3 months later. Information relating to services delivered and delivery methods employed was collected before and during the pandemic at two timepoints (T1 and T2). Results A total of 75 participants completed the survey at T1, with 58 participants completing the survey at both timepoints. Thirty‐six participants had complete data at T1. Day care centres and support groups were the most delivered primary services. During the pandemic, services shifted from in‐person to remote or hybrid. While in‐person services started to resume at T2, most services remained hybrid. At T2, the frequency of service delivery increased, however, a decreasing trend in usage was observed across survey timepoints. The telephone was the most employed format to deliver remote and hybrid services, however, reliance on videoconferencing software significantly increased at T1. Videoconferencing software was often used alongside the telephone and emails to remotely deliver services. Conclusions Services were able to adapt and provide support to some service recipients. Complementing novel approaches to service delivery with more traditional formats may facilitate access to service recipients with limited digital literacy. Following the easing of public health measures, many service recipients may be reluctant to engage with in‐person services. Thus, the provision of in‐person and remote services needs to be carefully balanced amidst the current hybrid landscape. Patient or Public Contribution Two public advisors (a former unpaid carer and a person living with dementia) were involved in designing and piloting the tool, interpreting the results and disseminating the findings. Both public advisors have experience in delivering dementia‐related social support services before and or during the pandemic in the United Kingdom.

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“…Social distancing measures and diminished physical contact with family and the outside world, for many, resulted in increased loneliness and impacted mental health ( LeVasseur, 2021 ; Fogelson, 2021 ). For some people, the only option for social connectedness was through the use of communication apps such as Zoom, Twitter, Skype, WhatsApp and FaceTime ( Cuffaro et al, 2020 ; Gerritzen et al, 2023 ; Greenberg et al, 2020 ; Alhayan et al, 2023 ). However some studies suggest that although there was an increase in the engagement of apps designed for people living with dementia during the COVID-19 pandemic, this was not statistically significant ( Kuo et al, 2022 ).…”

Section: Introductionmentioning

confidence: 99%

“It’s Another Feather in My Hat”-Exploring Factors Influencing the Adoption of Apps With People Living With Dementia

et al. 2023

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Introduction With the growing interest and availability of mobile applications (apps) for people living with dementia, it is desirable to have a broader insight into how technology adoption may be further improved. This paper aims to explore the factors influencing adoption of mobile applications for people living with dementia. Methods The recruitment of participants was facilitated through a dementia advocacy group of people living with dementia. A focus group design was applied to elicit discussion and to explore divergent views on the topic. The data was analysed using thematic analysis. Findings The 15 individuals who participated in this study comprised of seven women and eight men within the age range of 60-90 years. This study reports key findings pertaining to the views and experiences of using mobile apps. Data analysis revealed the following four distinct themes; (Theme 1: Living with dementia)-“That’s the difficulty there even with apps or anything else.” (Theme 2: Motivation)- “It makes me feel good. I feel a little with it [laughs], that its not all gone in there” (Theme 3: Fears and Concerns)- “Can somebody else get into your personal memories?” (Theme 4- Support)– “So it’s important that we have that support”. Together these themes encapsulate the most influential aspects, as highlighted by the participants influencing the acceptance and adoption of apps. Conclusion This paper explores the barriers and facilitators to app acceptance and adoption. This includes the importance of “feel good moments” and positive experiences, challenges associated with living with dementia, the importance of ongoing support, and security of the user’s information. This study adds to what is already known by capturing the views and experiences of people living with dementia in relation to the factors influencing the adoption of apps.

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

Cited by 13 publications

References 33 publications

A Qualitative Literature Search and Pilot Study of Online Support Groups for Patients With Dementia and Their Carers

A Qualitative Literature Search and Pilot Study of Online Support Groups for Patients With Dementia and Their Carers

Social support services for dementia during the COVID‐19 pandemic: A longitudinal survey exploring service adaptations in the United Kingdom

“It’s Another Feather in My Hat”-Exploring Factors Influencing the Adoption of Apps With People Living With Dementia

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