Young onset dementia − challenges in nomenclature and clinical definitions

Veen, Dennis van de; Bakker, Christian; Rosness, Tor Atle; Koopmans, Raymond T.C.M.

doi:10.4324/9781003099468-1-3

Cited by 3 publications

(2 citation statements)

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“…It is estimated that over 70,000 people in the United Kingdom (UK) are living with Young Onset Dementia (YOD) [1,2] (onset of dementia before the age of 65; van de Veen, et al [3]). Bannon, et al [4] and Stamou, et al [5] found that people with YOD want and need services that support and respect their independence, identity, skills, and abilities, and that help them and their families in staying socially connected.…”

Section: Introductionmentioning

confidence: 99%

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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Section: Introductionmentioning

confidence: 99%

Optimising Online Peer Support for People with Young Onset Dementia

Gerritzen,

Orrell,

McDermott

2024

IJERPH

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“…In 2018, around 1 million people were living with dementia in the United Kingdom, of whom almost 53,000 were younger than 65 years [ 1 ]. When someone is diagnosed before the age of 65 years, this can be defined as young onset dementia (YOD) [ 2 ]. People with YOD often face different challenges compared to those faced by older adults with dementia [ 3 , 4 ].…”

Section: Introductionmentioning

confidence: 99%

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

Gerritzen¹,

McDermott²,

Orrell³

2022

JMIR Res Protoc

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Background Many people with young onset dementia (YOD) may feel isolated. Peer support has the potential to improve social health, but the inconsistent availability of age-appropriate, in-person (peer) support services for people with YOD suggests that many people with YOD miss out on the potential benefits. Online peer support could be useful, as it overcomes geographical barriers, offers a variety of options, and adjusts to various needs and preferences. Objective Our study aims to develop evidence-based best practice guidance on online peer support for people with YOD and group facilitators to improve online peer support for people with YOD. Methods Our mixed methods study consists of 4 phases and follows the guidelines of the Medical Research Council on complex interventions. Each phase consists of multiple substudies. The study focuses on the development stage of the Medical Research Council framework and additionally develops a plan for the feasibility/piloting, evaluation, and implementation stages. The participants are people living with YOD and peer support facilitators. The qualitative research methods include interviews, focus groups, and open questions in a web-based survey. The quantitative methods include a web-based survey consisting of existing outcome measures. Results The study is funded by the European Union’s Horizon 2020 research and innovation program under the Marie Skłodowska-Curie Actions – Innovative Training Networks (H2020-MSCA-ITN-2018; grant agreement number: 813196), and it received ethical approval from the London Bromley Research Ethics Committee (reference number: 21/LO/0248) in April 2021. Recruitment started in May 2021. Data collection and analysis are expected to be finished by September 2022. Conclusions The best practice guidance can provide people with YOD with tailored and evidence-based information about online peer support, and it will be disseminated locally (in the United Kingdom) and internationally through dementia organizations, research networks, and academic institutions. International Registered Report Identifier (IRRID) DERR1-10.2196/38379

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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 (Preprint)

Gerritzen¹,

McDermott²,

Orrell³

2022

Preprint

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BACKGROUND Many people with Young Onset Dementia (YOD) may feel isolated. Peer support has the potential to improve social health but inconsistent availability of age-appropriate, in-person (peer) support services for people with YOD suggests many people with YOD miss out on the potential benefits. Online peer support could be useful as it overcomes geographical barriers, offers a variety of options, and adjusts to various needs and preferences. OBJECTIVE This study aims to develop evidence-based best practice guidance on online peer support for people with YOD and group facilitators to improve online peer support for people with YOD. METHODS This mixed-methods study consists of four phases and follows the guidelines of the Medical Research Council (MRC) on complex interventions. Each phase consists of multiple sub-studies. This study focusses on the development stage of the MRC framework and additionally develops a plan for the feasibility/piloting, evaluation, and implementation stages. Participants are people living with YOD and peer support facilitators. Qualitative research methods include interviews, focus groups, and open questions in an online survey. Quantitative methods include an online survey consisting of existing outcome measures. RESULTS This study is funded by the European Union’s Horizon 2020 research and innovation programme under the Marie Skłodowska-Curie Actions – Innovative Training Networks, H2020-MSCA-ITN-2018. Grant agreement No 813196 and received ethical approval from the London Bromley Research Ethics Committee (21/LO/0248) in April 2021. Recruitment started in May 2021. Data collection and analysis is expected to be finished by September 2022. CONCLUSIONS The best practice guidance can provide people with YOD with tailored and evidence-based information about online peer support and will be disseminated locally (UK) and internationally through dementia organisations, research networks, and academic institutions. CLINICALTRIAL N/A

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Young onset dementia − challenges in nomenclature and clinical definitions

Cited by 3 publications

References 0 publications

Optimising Online Peer Support for People with Young Onset Dementia

Optimising Online Peer Support for People with Young Onset Dementia

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

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

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