Online peer support for people with dementia: a scoping review protocol

JBI Evidence Synthesis, Journal Year: 2025, Volume and Issue: unknown

Published: March 18, 2025

Objective: The objective of this scoping review is to gain insights into the different online peer support opportunities available for people with dementia. Introduction: People dementia use a variety platforms support, such as social networking sites or videoconferencing platforms. Online can offer benefits, overcoming geographical barriers and opportunity choose platform mode communication that suits person’s needs preferences. However, there currently no synthesis Inclusion criteria: Participants in will include living self-reported diagnosis any form concept through platforms, while context accessible English. Methods: be conducted according JBI methodology reviews. A 3-step strategy used search 4 data sources: (1) scholarly gray literature databases, (2) Google engine, (3) media websites organizations, (4) consultations professionals. managed Covidence Excel. study selection extraction by 2 independent reviewers third reviewer consulted if needed. For draft instrument used, following recommendations JBI. Data extracted on platform, characteristics. findings presented tables narrative summary. Details project found Open Science Framework: https://doi.org/10.17605/OSF.IO/8JTQC

Language: Английский

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

Aging & Mental Health, Journal Year: 2023, Volume and Issue: 27(12), P. 2386 - 2394

Published: May 10, 2023

Objectives This study explores (1) which platforms people with YOD use for online peer support, (2) reasons using or not and (3) how to optimise potential benefits accessibility.Methods A mixed-methods survey was conducted including fixed-choice open questions. Participants were recruited through dementia organisations, Join Dementia Research the NHS convenience sampling. Fixed-choice questions analysed Chi-square test of significance free-text responses thematic analysis.Results total 69 completed surveys analysed. Zoom most popular followed by Facebook Twitter. Positives included sharing social joining from home, option choose a preferred platform. However, it can be difficult follow conversation understand others. Many unaware about support some felt uncomfortable talking strangers online. To improve access organisations healthcare professionals should advertise signpost more groups have clear description.Conclusion Online facilitate make accessible those who do in-person options. Future research practice focus on raising awareness support.

Language: Английский

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Unpaid carers’ experiences of supporting people with dementia to use social media

Aging & Mental Health, Journal Year: 2024, Volume and Issue: 28(7), P. 977 - 984

Published: Jan. 12, 2024

Objectives: The aim of this study was to explore unpaid carers' experiences supporting people with dementia use social media.

Language: Английский

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Self-Disclosure and Social Media Use among Younger and Older People with Dementia: An Internet-Mediated Mixed-Methods Study

International Journal of Human-Computer Interaction, Journal Year: 2023, Volume and Issue: 40(22), P. 7364 - 7374

Published: Oct. 15, 2023

Social media can facilitate self-disclosure of a stigmatized identity. This mixed-methods study explores by people with dementia on social media, comparing patterns and purpose use those aged 65 above versus under 65. Of 143 internet-using respondents an online survey, 77 (aged between 44 88 years) were users media. Facebook was the most commonly used platform (95%), followed Twitter, Instagram, LinkedIn, YouTube, TikTok. People more platforms frequently than older counterparts [χ2 = 5.58, p .031]. Content analysis open-ended questions, validated extended through qualitative interview data, showed younger shared dementia-related information for purposes advocacy awareness whereas prioritized journey. gives voice to share their experiences, raise awareness, support themselves other individuals affected condition.

Language: Английский

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Navigating who I was and who I am online: How people with dementia use social media platforms to support identity

Dementia, Journal Year: 2024, Volume and Issue: unknown

Published: Oct. 11, 2024

A diagnosis of dementia can have a powerful impact on identity, and social media platforms offer promising avenues for identity expression reconciliation. Addressing limited research in this area, we used semi-structured interviews to explore how 10 people with navigate their identity. Our thematic analysis produced four themes, showing afford unique opportunities self-expression, visibility, association, thereby empowering users maintain sense self, challenge stereotypes, foster community connections. Additionally, facilitated multifaceted holistic beyond the confines diagnosis. While there were concerns about online self-disclosure, sharing experiences had therapeutic benefits, aiding acceptance adjustment. Participants also leveraged establish continuity between pre- post-diagnostic selves, providing stability amid uncertainty. With increasing prevalence use among dementia, proactive measures by healthcare professionals, policymakers, technology developers, carers are required cultivate that safe, supportive, inclusive dementia.

Language: Английский

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The landscape of inequalities in dementia across Europe: First insights from the INTERDEM taskforce

International Journal of Geriatric Psychiatry, Journal Year: 2024, Volume and Issue: 39(5)

Published: May 1, 2024

Getting a diagnosis of dementia does not equate to equitable access care. People with and unpaid carers face many barriers care, which can vary within, across, different countries cultures. With little evidence across countries, the aim this scoping exercise was identify similar types inequalities in Europe, provide recommendations for addressing these.

Language: Английский

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Chinese People’s Child Bearing and Rearing Beliefs: The Interplay Between Confucianism and Neoliberalism

Journal of Cross-Cultural Psychology, Journal Year: 2024, Volume and Issue: 55(6), P. 638 - 658

Published: May 22, 2024

Previous research on Chinese people’s child bearing and rearing beliefs (CBRBs) has overwhelmingly focused how view specific issues about shown Confucian neoliberal perspectives these issues. However, limited studies have adopted a holistic to analyze CBRBs explored the influence of interplay between Confucianism neoliberalism their comprehensively. This study aimed bridge this gap by examining 2,590 pieces posts (microblogs published users) containing hashtag “#The proper rearing#” Weibo, one most popular social media sites in China. Corpus analysis reflexive thematic methods were used quantitatively qualitatively data, five themes with various subthemes generated. uncovered that three themes, namely, Parenthood Is Optional, How Raise Children Rewards Child Bearing Rearing, reflect an integration neoliberalism, while Blind Compliance (to Parents’ Demands) Not Advisable Costliness Women show perspective. The findings enhance understanding cultures CBRBs, provide insight for all concerned improve fertility health care programs.

Language: Английский

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Investigating the Readability and Linguistic, Psychological, and Emotional Characteristics of Digital Dementia Information Written in the English Language: Multitrait-Multimethod Text Analysis

JMIR Formative Research, Journal Year: 2023, Volume and Issue: 7, P. e48143 - e48143

Published: Aug. 15, 2023

Past research in the Western context found that people with dementia search for digital information peer-reviewed medical articles, advocacy and organizations, blogs written by other dementia. This past work also demonstrated do not perceive English as emotionally or cognitively accessible.In this study, we sought to investigate readability; linguistic, psychological, emotional characteristics; target audiences of information. We conducted a textual analysis 3 different types text-based English: 300 35 websites, 50 blogs.We assessed text's readability using Flesch Reading Ease Flesch-Kincaid Grade Level measurements, well tone, analytical thinking, clout, authenticity, word frequencies natural language processing tool, Linguistic Inquiry Word Count Generator. thematic categorize each source used these categorizations further statistical analysis.The median score all (N=1139) were 12.1 38.6, respectively, revealing scores higher than minimum requirement. articles had significantly (P=.05) count thinking lower tone websites blogs. Further, (P=.48) authenticity but websites. Using analysis, most (156/227, 68.7%) web pages (399/612, 65.2%) targeted at Website general audience scores. In addition, website ratings. The on caregivers clout scores.Our findings indicate there is an abundance dementia, readable audience. problematic considering <12 years education are risk developing our demonstrate has negative which may be contributing factor mental health crisis many face after receiving diagnosis. Therefore, call content creators make more accessible focus their efforts providing way does perpetuate overly narratives

Language: Английский

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Carers' experiences and perspectives of the use of anticholinergic medications in people living with dementia: Analysis of an online discussion forum

Health Expectations, Journal Year: 2024, Volume and Issue: 27(1)

Published: Jan. 15, 2024

Abstract Introduction There is concern about the use of anticholinergic medications in people living with dementia (PLWD). Such medicines may increase cognitive decline and be associated higher mortality PLWD who take these medicines. The aim this study was to analyse data from an online discussion forum explore experiences perspectives carers population. Methods Following receipt ethical approval, archived discussions (posts) Dementia Talking Point, a fully public for anyone affected by dementia, created maintained Alzheimer's Society, were searched date inception January 2022 using range search terms including commonly used Posts, any terms, assessed relevance analysed inductive thematic analysis. Results Five hundred fifty unique posts analysed, all which had been provided carers, no attributed PLWD. themes that encompassed carers' (1) motivators prescribing, (2) on process prescribing (3) outcomes prescribing. dominant motivator management noncognitive symptoms, pre‐ postdiagnosis dementia. Carers' informed assessment risk‐benefit starting medication shared decision‐making between carer healthcare professional greater or lesser degree. observing effects medicines, turn influenced whether reviewed continued unchanged, but amended, reinitiated if medicine previously stopped discontinued (the deprescribing). Conclusion This has insights into PLWD, highlighting how are prescribed concerns their use. clear need receive information professionals consider optimise avoid adverse effects. Patient Public Contribution work findings previous research studies focusing optimising primary care, interviews conducted professionals. Although not strictly patient involvement, we utilised feedback key stakeholders inform questions aim/objectives study.

Language: Английский

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Development of a Best Practice Guidance on Online Peer Support for People with Young-Onset Dementia

Behavioral Sciences, Journal Year: 2024, Volume and Issue: 14(9), P. 746 - 746

Published: Aug. 26, 2024

This work aimed to develop a Best Practice Guidance on online peer support for people with young-onset dementia (YOD). The was developed through systematic literature review, focus groups, an survey, and interviews consultations YOD professionals. consists of two parts. Part 1 contains information about what entails, expect from it, how get involved. 2 is at those who facilitate or moderate (professionals lived experience) includes guidelines optimize YOD. provides (1) evidence-based, relevant, accessible entails it could help them, (2) providers facilitators YOD, (3) healthcare professionals concise tool signposting. Future research needed implement disseminate the among organizations practices should include rigorous studies implementation sustainability

Language: Английский

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