Frederiksen KS, Crawford R, Hahn-Pedersen J, Morrison R, Jeppesen R, Doward L, Weidner W. “Don't you recognize me...?”: insights from social media posts on the impact of alzheimer's disease on care partners. Poster presented at the AAIC 2023 Conference; July 16, 2023. Amsterdam, Netherlands.

BACKGROUND: Caring for someone with Alzheimer’s disease (AD) can have a profound impact on care partners’ wellbeing and daily life. We conducted a social media (SM) review to gain insights into how the impact of AD on care partners is described by persons-living-with-AD (PwADs)/care partners/family members.

METHODS: Web-based searches identified SM data from 4 sources: YouTube, Alzheimer’s Association, Alzheimer Society of Canada, and Dementia UK. English-language SM posts uploaded between May 2011-May 2021 shared by PwADs/care partners/family members were included in the review if posts discussed the impact of AD on care partners. SM data were analyzed thematically.

RESULTS: Of 279 SM posts identified, 55 met the review criteria (21 blog posts, 21 videos, 13 comments). The 55 posts were shared by 70 contributors (4 PwADs and 66 PwAD care partners/family members) who discussed self-reported/observed impacts of AD on care partners and family members. Notable areas affected included psychological and emotional well-being (n=53, 75.7%); a profound theme raised was the emotional distress and sadness (n=24; 34.3%) associated with the care partners’ experience of ‘living bereavement’; i.e., the gradual psychological receding of a loved one prior to their passing. Care partner emotional distress was also exacerbated by the PwAD’s AD-related symptoms such as altered behaviour and memory loss. Contributors also reported impacts on care partner, overall health-related-quality-of-life (n=27, 38.6%), daily life (n=9, 12.9%), work and employment (n=8, 11.4%) and physical health (n=5, 7.1%). Prioritisation of patient care had long-term consequences for care partners such as diminished personal wellbeing, family and personal sacrifices including loss of employment and unanticipated financial burden.

CONCLUSIONS: SM research provides a unique approach to explore the experiences and challenges associated with caring for someone with AD potentially not captured through traditional research methods. Insights from SM data emphasized the burden of ‘living bereavement’ for care partners and the subsequent need for improved coping strategies/interventions to enable care partners to better manage this phenomenon. The care partners’ candid posts provided valuable insights on the psychological, social, and financial impairments associated with becoming a care partner, which require further investigation.

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