TY - JOUR AU - Frederiksen, Kristian Steen AU - Hahn-Pedersen, Julie AU - Crawford, Rebecca AU - Morrison, Ross AU - Jeppesen, Rose AU - Doward, Lynda AU - Weidner, Wendy PY - 2025 DA - 2025/2/18 TI - Traversing Shifting Sands—the Challenges of Caring for Someone With Alzheimer's Disease and the Impact on Care Partners: Social Media Content Analysis JO - J Med Internet Res SP - e55468 VL - 27 KW - Alzheimer disease KW - caregiver KW - burden KW - health-related quality of life KW - social media AB - 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. SN - 1438-8871 UR - https://www.jmir.org/2025/1/e55468 UR - https://doi.org/10.2196/55468 DO - 10.2196/55468 ID - info:doi/10.2196/55468 ER -