@Article{info:doi/10.2196/55468,
author="Frederiksen, Kristian Steen
and Hahn-Pedersen, Julie
and Crawford, Rebecca
and Morrison, Ross
and Jeppesen, Rose
and Doward, Lynda
and Weidner, Wendy",
title="Traversing Shifting Sands---the Challenges of Caring for Someone With Alzheimer's Disease and the Impact on Care Partners: Social Media Content Analysis",
journal="J Med Internet Res",
year="2025",
month="Feb",
day="18",
volume="27",
pages="e55468",
keywords="Alzheimer disease; caregiver; burden; health-related quality of life; social media",
abstract="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. ",
issn="1438-8871",
doi="10.2196/55468",
url="https://www.jmir.org/2025/1/e55468",
url="https://doi.org/10.2196/55468"
}