Background: The Covid-19 pandemic has disproportionately impacted individuals with pre-existing health conditions. This study aims to describe the challenges of people with Alzheimer’s disease (AD) and their caregivers experienced during the pandemic.
Method: We used the RLS Reveal NLP (Natural Language Processing) platform to analyze key challenges and issues that were shared online over 47 social media sites by patients living with AD and caregivers during the COVID-19 pandemic between January 2020 and January 2021.
Result: A total of 3,422 narratives were analyzed and reported in aggregate categories, including extensive descriptions on the worsening of AD, difficulties in understanding and maintaining rules of masking and social distancing, limited opportunities of social interactions, reduced caregiver availability, and emotional disturbance or exacerbation with fear, anxiety, and loneliness (Table). Disease worsening manifested with or without COVID-19 diagnosis, leading to increased reliance and need for caregiver assistance and declining patient wellbeing. The patient challenges were compounded by increased caregiver burden, expressed through the social media on disruptions to Work-from-Home routines and the need for additional caregiver support to sustain household income. The caregiver narratives revealed a range of challenges, including common issues of getting access to COVID-19 vaccines and unique issues of having to reminding or assisting patients with handwashing, social distancing, or staying at home. Patient disease aggravation resulting from restrictive caregiver access to long term care facilities was frequently communicated online by the caregivers, highlighting increased caregiver emotional stress that led to anger, frustration, crying, loneliness, depression and emotional fatigue.
Conclusion: This social media study using NLP uncovers a broad range of challenges experienced by patients with AD and the caregivers during the COVID-19 pandemic. They appear to have suffered unique health, cognitive, social, emotional, interpersonal, and daily living burden, resulting in worsening of disease and declining wellbeing. The untoward consequences may well likely surpass the pandemic, leading to prolonged deleterious impact in patient and caregiver personal lives and deepened public health crisis with AD.