Frederiksen KS, Crawford R, Hahn-Pedersen JH, Morrison R, Jeppesen R, Doward L, Weidner W. Insights from social media posts on the lived experience of alzheimer's disease. Poster to be given at the ISPOR 2023 Conference; May 7, 2023. Boston, MA.

OBJECTIVES: To gain insights into the lived experience of Alzheimer’s Disease (AD) for persons-living-with-AD (PwADs) from the perspective of PwADs and care partners using social media (SM) data.

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 lived experience of AD for PwADs. SM data were analyzed thematically.

RESULTS: 57 SM posts met the review criteria (24 blogs, 20 videos, 13 comments). The 57 posts were shared by 74 contributors (18 PwADs; 56 PwAD care partners/family members). 55 contributors (74.3%) discussed issues associated with AD diagnosis including observed subtle changes in the PwADs’ wellbeing pre-diagnosis and challenges associated with attaining an AD diagnosis (e.g., delayed diagnosis, burdensome assessments). Of note was the observation of early AD signs/symptoms that impeded PwADs’ lives or were a cause of concern for care partners at least 12 months prior to a formal AD diagnosis. 43 contributors (58.1%) discussed AD-related symptoms: memory issue/forgetfulness (n=26;35.1%), confusion (n=12;16.2%), and behavioural changes (n=9;12.2%). Key health-related-quality-of-life (HRQOL) impacts for PwADs included impaired emotional/psychological well-being (n=24;32.4%); notably, the stigma of AD being “an old person’s disease” and impact of AD on PwADs activities/daily life (n=17;23.0%), work (n=12;16.2%), and social life/relationships (n=11;14.9%). 25 contributors (33.8%) commented on treatment/management experiences (e.g., care partner burden, treatment types, decision-making).

CONCLUSIONS: This SM data review provided valuable insights into the lived experience of people with AD. These data reveal a detrimental impact on PwADs’ HRQOL, often exacerbated by limited treatment/management options. Unsolicited SM posts may not be generalizable, but this unique data source offers access to PwAD/care partner-perceived issues of importance possibly not be captured by traditional research.