Understanding Challenges and Emotions of Informal Caregivers of General Older Adults and People With Alzheimer Disease and Related Dementia: Comparative Study (Preprint)
Authors: Huang Nova Mengxia , Wong Liang Ze , Ho Shirley S , Timothy Bryan 
Published: December 2023

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 <i>expressing feelings</i> (2178/3028, 71.93%) and <i>seeking advice and support</i> (1982/3028, 65.46%). Other topics covered various challenges in caregiving, such as <i>duration of medical care</i> (1954/3028, 64.53%), <i>sleep and incontinence</i> (1536/3028, 50.73%)<i>, financial issues</i> (1348/3028, 44.52%), and <i>nursing home</i> (1221/3028, 40.32%). There was a positive, negligible correlation between <i>expressing feelings</i> and <i>seeking advice and support</i> (ρ=0.09, <i>P</i>&lt;.001). Other topics also showed positive, negligible or weak correlations with these 2 topics but in distinct patterns. Posts from older adult–related subreddits were more focused on practical caregiving issues and <i>seeking advice and support</i>, whereas posts from Alzheimer disease–related subreddits emphasized health- and medical-related topics and <i>expressing feelings</i>. Caregivers in both contexts predominantly expressed negative emotions (older adults: 1263/1552, 81.38%; Alzheimer disease: 1247/1476, 84.49%), with caregivers in Alzheimer disease–related subreddits exhibiting slightly greater <i>fear</i> and <i>sadness</i> (<i>P</i>&lt;.001). Specific challenges were significantly correlated with negative emotions: <i>duration of medical</i> <i>care</i> was positively, weakly correlated with <i>anger</i> (ρ=0.25, <i>P</i>&lt;.001), <i>fear</i> (ρ=0.25, <i>P</i>&lt;.001), and <i>sadness</i> (ρ=0.22, <i>P</i>&lt;.001). <i>Medical appointments</i> were positively, negligibly correlated with <i>anger</i> (ρ=0.10, <i>P</i>&lt;.001), <i>fear</i> (ρ=0.09, <i>P</i>&lt;.001), and <i>sadness</i> (ρ=0.06, <i>P</i>&lt;.001). <i>Sleep and incontinence</i> (ρ=0.14, <i>P</i>&lt;.001) and <i>finances</i> (ρ=0.24, <i>P</i>&lt;.001) were positively, weakly correlated with <i>anger</i>.

CONCLUSIONS

By identifying the challenges and feelings expressed by caregivers for general older adults and caregivers for patients with Alzheimer disease and related dementia, our findings could inform health practitioners and policy makers in developing more targeted support interventions for informal caregivers in different contexts.