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"It's a lonely disease": Cultivating Online Spaces for Social Support among People Living with Dementia and Dementia Caregivers

Authors:

Jazette Johnson,

Anne Marie Piper,

Gillian R. HayesAuthors Info & Claims

Proceedings of the ACM on Human-Computer Interaction, Volume 6, Issue CSCW2

Article No.: 408, Pages 1 - 27

https://doi.org/10.1145/3555133

Published: 11 November 2022 Publication History

Abstract

People living with dementia as well as dementia caregivers are finding new ways to provide and receive support online. The emerging use of social media platforms-such as TikTok, Clubhouse, and Facebook-by people with dementia and dementia caregivers enables new forms of sharing about stigmatized, poorly understood, and often under-discussed experiences. Building on prior work focused on formal support groups, we report findings from an interview study of how people living with dementia and dementia caregivers provide and receive social support through emerging online spaces and communities. Our analysis reveals that both groups cultivate new online spaces for sharing about the experience of dementia while also navigating tensions surrounding public disclosure of lived experiences, advocacy, education, and the ability to protect and keep private elements of life experiences. We discuss how these groups cultivate online spaces across platforms and contribute to ongoing ethical debates about consent in online communities. We conclude with questions that guide future work on emerging online spaces for supporting people living with dementia and caregivers of people living with dementia.

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Kim TKim HRoberts AJacobs MKay M(2024)Opportunities in Mental Health Support for Informal Dementia Caregivers Suffering from Verbal AgitationProceedings of the ACM on Human-Computer Interaction10.1145/36373818:CSCW1(1-26)Online publication date: 26-Apr-2024
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Smriti DWang LHuh-Yoo J(2024)Emotion Work in Caregiving: The Role of Technology to Support Informal Caregivers of Persons Living With DementiaProceedings of the ACM on Human-Computer Interaction10.1145/36373258:CSCW1(1-34)Online publication date: 26-Apr-2024
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Houben MBrankaert RGosen Mvan Overloop VIJsselsteijn W(2024)Design Opportunities for Care Transitions in Dementia: Understanding Informal Caregivers’ Experiences Through a Practice-Informed ApproachProceedings of the 2024 CHI Conference on Human Factors in Computing Systems10.1145/3613904.3642556(1-13)Online publication date: 11-May-2024
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Index Terms

"It's a lonely disease": Cultivating Online Spaces for Social Support among People Living with Dementia and Dementia Caregivers
1. Human-centered computing
  1. Collaborative and social computing
    1. Collaborative and social computing theory, concepts and paradigms
      1. Social media

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cover image Proceedings of the ACM on Human-Computer Interaction

Proceedings of the ACM on Human-Computer Interaction Volume 6, Issue CSCW2

CSCW

November 2022

8205 pages

EISSN:2573-0142

DOI:10.1145/3571154

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Jeff Nichols
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