Understanding the impact of social stigma on the patient journey in Alzheimer’s disease through social media narratives

Abstract

AbstractBackgroundPatients living with Alzheimer’s disease (AD) and their caregivers/health care providers (HCP) recognize the importance of social stigma; however, traditional surveys do not capture nuances of experienced stigma. We sought to systematically study stigma in AD using social media narratives.MethodOnline narratives posted by patients with AD, caregivers, and HCPs (ie, stakeholders) were collected from 84 public social media sites from 1998‐2021. Using RLS Reveal’s Natural Language Processing (NLP) platform, we identified stakeholder narratives containing ‘stigma’‐related terms. NLP algorithms and manual curation, alongside subject matter expert review, were used to analyze the narratives. Data were examined by stages of the patient journey: pre‐diagnosis, diagnosis, and post‐diagnosis.ResultA total of 112,464 online narratives from AD stakeholders were screened; 4,392 (4%) that specifically mentioned stigma‐related terms were identified and are the focus of this analysis. Most narratives were by caregivers (n = 1917), followed by patients (n = 342) and HCP (n = 306). The majority of narratives (n = 3968; 90.3%) were in the post‐diagnosis phase of the patient journey, followed by diagnosis (n = 304; 6.9%), and pre‐diagnosis (n = 120; 2.7%). In the pre‐diagnosis phase, 78% of the narratives were posted by caregivers, 11% by HCPs, and 11% by patients. Lack of support was the most common theme identified in 73/120 (60.8%) of pre‐diagnosis narratives – mostly by caregivers (38/73; 52.1%). During the diagnosis phase, 47% of the narratives were posted by caregivers, 28% by HCPs, and 25% by patients. A feeling that support/advocacy is lacking was a common theme, and identified in 128/304 (42.1%) of the diagnosis phase narratives. In the post‐diagnosis phase, 78% of the narratives were posted by caregivers, 10% by HCPs, and 12% by patients; the fear/worry caused by stigma was the most common theme and identified in 2467/3968 (62.2%) of these narratives. In addition, stakeholders discussed the feeling of shame related to the AD diagnosis – a theme identified in 1,017/3,968 (25.6%) of post‐diagnosis narratives.ConclusionWe found that social media narratives by various AD stakeholders identified a negative impact of stigma throughout the patient journey.