Background: Social media platforms are increasingly used by people living with dementia and their care partners to seek information and advice, share personal stories, raise awareness, and offer support to others. Engagement with social media is often accompanied by a personal disclosure of a dementia diagnosis or identification as a care partner, but the impact of this disclosure remains unknown. Social media engagement can be beneficial by facilitating peer-interactions and social support; however experts have raised concerns about the potential for exposure to misinformation and stigma as a result of self-disclosure. As the popularity of self-disclosure on social media increases, balancing these risks and benefits is critical to promote healthy and safe social media use for people living with dementia and their care partners. The goal of this project is to deliver an evidence-based resource to support decision-making around social media use in dementia.
Method: As a first step toward addressing this goal, the current project aims to identify the motivations and impact of self-disclosure on social media. Posts related to self-disclosure were retrieved from Facebook groups and pages over a six-month period for analysis. Automated and manual sentiment- and model-based interaction analyses were carried out on the data to characterize posts based on their 1) primary motivation for self-disclosure, 2) polarity, 3) bids for action, and 4) anonymity of the poster.
Result: Preliminary findings reveal information- and support-seeking as the most common motivations for self-disclosure, highlighting the importance of guidance on identifying misinformation and engaging in healthy peer support.
Conclusion: This work will help empower the dementia community to access support and information safely in the increasingly popular social media spaces to enhance peer supports and access to high-quality resources.
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http://dx.doi.org/10.1002/alz.091047 | DOI Listing |
Alzheimers Dement
December 2024
University of Southern California, San Diego, USA.
Background: Recruitment of demographically diverse participants into Alzheimer's disease (AD) clinical trials, encompassing both screening and randomization, remains a consistent and persistent challenge contributing to underrepresentation of certain groups. Despite the exciting prospects of identifying therapeutic interventions for biomarker-eligible, cognitively unimpaired individuals, these studies grapple with the inherent complexities of AD trials coupled with intricate and time-consuming screening processes. Addressing this the issue of underrepresentation necessitates concerted and intentional efforts that prioritize inclusivity and equitable access to enroll adults meeting study criteria, reflecting the demographic and social diversity of North America.
View Article and Find Full Text PDFIntroduction: The United States is undergoing a demographic shift with increasing proportions of older adults. Currently, one in three older adults pass away with a form of Alzheimer's disease or related dementias (ADRD). This figure is higher in underrepresented and underserved groups including older adults in rural Appalachian communities.
View Article and Find Full Text PDFBackground: The LatAm-FINGERS trial marks a pioneering initiative as the first non-pharmacological clinical trial encompassing participants from 12 Latin American countries, including Argentina, Brazil, Bolivia, Chile, Colombia, Costa Rica, Ecuador, Dominican Republic, Mexico, Peru, Puerto Rico, and Uruguay. This initiative represents a significant advancement in promoting inclusivity and diversity in clinical trial recruitment, particularly in underserved populations.
Method: The LatAm-FINGERS trial is a multicenter randomized clinical trial evaluating a lifestyle intervention tailored for the Latin American population.
Alzheimers Dement
December 2024
Singapore General Hospital, Singapore, Singapore, Singapore.
Background: With the advent of new media, more people - possibly including caregivers of persons with dementia - are turning to social media platforms to share their thoughts and emotions related to personal life experiences. This may potentially serve as an opportunity to leverage on social media to gain insights into the key issues faced by dementia caregivers. We examined salient concerns of dementia caregivers through Twitter posts, aiming to shed light on how to better support and engage such caregivers.
View Article and Find Full Text PDFAlzheimers Dement
December 2024
University of Pennsylvania, Philadelphia, PA, USA.
Background: Caring for family caregivers of dementia patients has grown to an important topic. Social media platforms, like Twitter, provide great resources for studying the needs of caregivers. It would be beneficial to understand the caregivers' interested or concerned topics from their tweets.
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