%0 Journal Article
%@ 1438-8871
%I JMIR Publications
%V 27
%N 
%P e55468
%T Traversing Shifting Sands—the Challenges of Caring for Someone With Alzheimer's Disease and the Impact on Care Partners: Social Media Content Analysis
%A Frederiksen,Kristian Steen
%A Hahn-Pedersen,Julie
%A Crawford,Rebecca
%A Morrison,Ross
%A Jeppesen,Rose
%A Doward,Lynda
%A Weidner,Wendy
%+ , RTI Health Solutions, The Pavilion, Towers Business Park, Wilmslow Road, Didsbury, Manchester, M20 2LS, United Kingdom, 44 161 447 6000, rcrawford@rti.org
%K Alzheimer disease
%K caregiver
%K burden
%K health-related quality of life
%K social media
%D 2025
%7 18.2.2025
%9 Original Paper
%J J Med Internet Res
%G English
%X Background: Social 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. Objective: The 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. Methods: We 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. Results: Of 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. Conclusions: Insights 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. 
%R 10.2196/55468
%U https://www.jmir.org/2025/1/e55468
%U https://doi.org/10.2196/55468