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.
