Traversing Shifting Sands—the Challenges of Caring for Someone With Alzheimer's Disease and the Impact on Care Partners: Social Media Content Analysis
BackgroundSocial media data provide a valuable opportunity to explore the effects that Alzheimer disease (AD) has on care partners, including the aspects of providing care that have the greatest impacts on their lives and well-being and their priorities for their loved ones’...
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| Format: | Article |
| Language: | English |
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JMIR Publications
2025-02-01
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| Series: | Journal of Medical Internet Research |
| Online Access: | https://www.jmir.org/2025/1/e55468 |
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| author | Kristian Steen Frederiksen Julie Hahn-Pedersen Rebecca Crawford Ross Morrison Rose Jeppesen Lynda Doward Wendy Weidner |
| author_facet | Kristian Steen Frederiksen Julie Hahn-Pedersen Rebecca Crawford Ross Morrison Rose Jeppesen Lynda Doward Wendy Weidner |
| author_sort | Kristian Steen Frederiksen |
| collection | DOAJ |
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BackgroundSocial media data provide a valuable opportunity to explore the effects that Alzheimer disease (AD) has on care partners, including the aspects of providing care that have the greatest impacts on their lives and well-being and their priorities for their loved ones’ treatment.
ObjectiveThe objective of this social media review was to gain insight into the impact of caring for someone with AD, focusing particularly on impacts on psychological and emotional well-being, social functioning, daily life and ability to work, health-related quality of life, social functioning, and relationships.
MethodsWe reviewed social media posts from 4 sources—YouTube (Google), Alzheimer’s Association, Alzheimer Society of Canada, and Dementia UK—to gain insights into the impact of AD on care partners. English-language posts uploaded between May 2011 and May 2021 that discussed the impact of AD on care partners were included and analyzed thematically.
ResultsOf the 279 posts identified, 55 posts, shared by 70 contributors (4 people living with AD and 66 care partners or family members), met the review criteria. The top 3 reported or observed impacts of AD discussed by contributors were psychological and emotional well-being (53/70, 76%), social life and relationships (37/70, 53%), and care partner overall health-related quality of life (27/70, 39%). An important theme that emerged was the emotional distress and sadness (24/70, 34%) associated with the care partners’ experience of “living bereavement” or “anticipatory grief.” Contributors also reported impacts on care partners’ daily life (9/70, 13%) and work and employment (8/70, 11%). Care partners’ emotional distress was also exacerbated by loved ones’ AD-related symptoms (eg, altered behavior and memory loss). Caregiving had long-term consequences for care partners, including diminished personal well-being, family and personal sacrifices, loss of employment, and unanticipated financial burdens.
ConclusionsInsights from social media emphasized the psychological, emotional, professional, and financial impacts on individuals providing informal care for a person with AD and the need for improved care partner support. A comprehensive understanding of care partners’ experiences is needed to capture the true impact of AD. |
| format | Article |
| id | doaj-art-e082ed591edd4ac0812fe3e04acdf8ce |
| institution | DOAJ |
| issn | 1438-8871 |
| language | English |
| publishDate | 2025-02-01 |
| publisher | JMIR Publications |
| record_format | Article |
| series | Journal of Medical Internet Research |
| spelling | doaj-art-e082ed591edd4ac0812fe3e04acdf8ce2025-08-20T02:43:38ZengJMIR PublicationsJournal of Medical Internet Research1438-88712025-02-0127e5546810.2196/55468Traversing Shifting Sands—the Challenges of Caring for Someone With Alzheimer's Disease and the Impact on Care Partners: Social Media Content AnalysisKristian Steen Frederiksenhttps://orcid.org/0000-0001-5124-4417Julie Hahn-Pedersenhttps://orcid.org/0000-0001-8187-7047Rebecca Crawfordhttps://orcid.org/0000-0002-0489-7754Ross Morrisonhttps://orcid.org/0000-0003-1643-2222Rose Jeppesenhttps://orcid.org/0000-0002-9984-2202Lynda Dowardhttps://orcid.org/0000-0002-6236-469XWendy Weidnerhttps://orcid.org/0000-0002-1051-2953 BackgroundSocial media data provide a valuable opportunity to explore the effects that Alzheimer disease (AD) has on care partners, including the aspects of providing care that have the greatest impacts on their lives and well-being and their priorities for their loved ones’ treatment. ObjectiveThe objective of this social media review was to gain insight into the impact of caring for someone with AD, focusing particularly on impacts on psychological and emotional well-being, social functioning, daily life and ability to work, health-related quality of life, social functioning, and relationships. MethodsWe reviewed social media posts from 4 sources—YouTube (Google), Alzheimer’s Association, Alzheimer Society of Canada, and Dementia UK—to gain insights into the impact of AD on care partners. English-language posts uploaded between May 2011 and May 2021 that discussed the impact of AD on care partners were included and analyzed thematically. ResultsOf the 279 posts identified, 55 posts, shared by 70 contributors (4 people living with AD and 66 care partners or family members), met the review criteria. The top 3 reported or observed impacts of AD discussed by contributors were psychological and emotional well-being (53/70, 76%), social life and relationships (37/70, 53%), and care partner overall health-related quality of life (27/70, 39%). An important theme that emerged was the emotional distress and sadness (24/70, 34%) associated with the care partners’ experience of “living bereavement” or “anticipatory grief.” Contributors also reported impacts on care partners’ daily life (9/70, 13%) and work and employment (8/70, 11%). Care partners’ emotional distress was also exacerbated by loved ones’ AD-related symptoms (eg, altered behavior and memory loss). Caregiving had long-term consequences for care partners, including diminished personal well-being, family and personal sacrifices, loss of employment, and unanticipated financial burdens. ConclusionsInsights from social media emphasized the psychological, emotional, professional, and financial impacts on individuals providing informal care for a person with AD and the need for improved care partner support. A comprehensive understanding of care partners’ experiences is needed to capture the true impact of AD.https://www.jmir.org/2025/1/e55468 |
| spellingShingle | Kristian Steen Frederiksen Julie Hahn-Pedersen Rebecca Crawford Ross Morrison Rose Jeppesen Lynda Doward Wendy Weidner Traversing Shifting Sands—the Challenges of Caring for Someone With Alzheimer's Disease and the Impact on Care Partners: Social Media Content Analysis Journal of Medical Internet Research |
| title | Traversing Shifting Sands—the Challenges of Caring for Someone With Alzheimer's Disease and the Impact on Care Partners: Social Media Content Analysis |
| title_full | Traversing Shifting Sands—the Challenges of Caring for Someone With Alzheimer's Disease and the Impact on Care Partners: Social Media Content Analysis |
| title_fullStr | Traversing Shifting Sands—the Challenges of Caring for Someone With Alzheimer's Disease and the Impact on Care Partners: Social Media Content Analysis |
| title_full_unstemmed | Traversing Shifting Sands—the Challenges of Caring for Someone With Alzheimer's Disease and the Impact on Care Partners: Social Media Content Analysis |
| title_short | Traversing Shifting Sands—the Challenges of Caring for Someone With Alzheimer's Disease and the Impact on Care Partners: Social Media Content Analysis |
| title_sort | traversing shifting sands the challenges of caring for someone with alzheimer s disease and the impact on care partners social media content analysis |
| url | https://www.jmir.org/2025/1/e55468 |
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