Understanding Challenges and Emotions of Informal Caregivers of General Older Adults and People With Alzheimer Disease and Related Dementia: Comparative Study.

Résumé

BACKGROUND: Faced with multiple challenges, informal caregivers often turn to online support communities for information and support. While scholarly attention has focused on experiences expressed by informal caregivers in these communities, how caregivers' challenges and emotional expressions vary across different health contexts remains understudied.OBJECTIVE: We aimed to examine and compare the challenges discussed by informal caregivers of general older adults and those of patients with Alzheimer disease and related dementia, as well as their emotional expressions, on Reddit. In addition, we examined how informal caregivers expressed their emotions in response to various challenges.METHODS: We collected posts from 6 subreddits, including 3 subreddits on caregiving for older adults and 3 on caregiving for patients with Alzheimer disease and related dementia. Using topic modeling, we identified topics discussed by caregivers in the collected posts. We further used deep reading to contextualize these topics and understand the challenges behind them, conducted sentiment analysis to investigate their emotional expressions, and used Spearman rank-order correlation to examine the relationship between the obtained topics and emotions.RESULTS: In total, 3028 posts were retrieved, including 1552 from older adult-related subreddits and 1476 from Alzheimer disease-related subreddits; 18 key topics were identified, with the most frequent topics being expressing feelings (2178/3028, 71.93%) and seeking advice and support (1982/3028, 65.46%). Other topics covered various challenges in caregiving, such as duration of medical care (1954/3028, 64.53%), sleep and incontinence (1536/3028, 50.73%), financial issues (1348/3028, 44.52%), and nursing home (1221/3028, 40.32%). There was a positive, negligible correlation between expressing feelings and seeking advice and support (ρ=0.09, P