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Artificial Intelligence in Health ADRD caregiver experiences on Reddit

Table 1. BERTopics, keywords, and sentiment from posts on caregiving for family members with ADRD on Reddit
Topic Number of Top 5 keywords Topic interpreted # Negative # Positive Example text
comments comments comments
(%) (%)
0 926 Get, go, time, Sharing of caregiver 415 (44.8) 462 (49.9) “First, it was little things – but very noticeable – such as
thing, know stories words. A few months later, it was people; she would confuse
people from her past and the present. Then, she started
hallucinating and making up stories about people that didn’t
exist doing things with her she couldn’t have possibly done
(like going to places that no longer existed in my hometown
or visiting friends who were dead). Next, she completely
forgot about my grandpa (who’d been dead for ten years at
this point, and to whom she’d been married for over 50), and
after that, she also forgot about her firstborn son, who had
died 8 years before.”
1 126 Thank, sorry, Appreciation of 31 (24.6) 67 (53.2) “I appreciate you sharing this. Lots of us are in the same
much, go, share online community boat with you.”
2 33 Abuse, Concern of abuse 12 (36.4) 19 (57.6) “Not if they don’t want to be. I feel sad for the person he is
forgiveness, peace, on ADRD family now because dementia really does change who you are, but
abuser, heart member I do not fault the family. They still see their abuser when
they look at him since he still has the same face, and it
doesn’t make sense to revictimize them so he can have extra
company.”
3 31 Medicaid, state, Financial struggles 3 (9.7) 26 (83.9) “How do you afford such care in America? Insurance only
care, asset, qualify of caregivers covers 28 days (classified as rehab) and the rest is out of
pocket. And it’s very expensive. Soon the accounts are empty
and they go on Medicaid, right? Eventually drying up all
assets.”
4 22 Hallucination, cat, Early signs of ADRD 6 (27.3) 12 (54.5) “The first thing we noticed was paranoia. It started as vague
see, real, brain in family member and even somewhat plausible and over time just got more
and more extreme. She lives in assisted living now and pretty
much everyone who visits her has said that they’re taking
up dangerous extreme sports because that is no way for a
person to die.”
5 13 Repeat, story, Symptoms of ADRD 3 (23.1) 3 (23.1) Two minutes later:
plan, get, weekend in family members “Have you got plans for the weekend?”
Abbreviation: ADRD: Alzheimer’s disease and related dementias.

24.6% of the posts had a negative sentiment and 53.2% had included comments related to the financial situations and
a positive sentiment. complexities faced in taking care of a family with ADRD
by caregivers. The top five keywords in Topic 3 were
Topic 2 was identified by BERTopic and manually “medicaid,” “state,” “care,” “asset,” and “qualify.” As shown in
labeled as “concerns of abuse for ADRD family members.” Table 1 and Figure 1, 9.7% of the comments in Topic 3 had
This topic included posts in which caregivers described a negative sentiment and 83.9% had a positive sentiment.
fears of ADRD family members who were patient abuse Topic 3 had the highest proportion of positive comments
at care facilities. The top five keywords in Topic 1 were as well as the highest mean positive VADER scores among
“abuse,” “forgiveness,” “peace,” “abuser,” and “heart.” all the topics (Figure 1).
As shown in Table 1 and Figure 1, 36.4% of the posts in
Topic 2 had a negative sentiment and 57.6% had a positive Topic 4 was identified by BERTopic and manually
sentiment. Despite Topic 2 having a higher proportion of labeled as “early signs of ADRD in family members.” This
positive comments than negative comments, the negative topic included posts in which caregivers discussed their
posts had the highest mean negative VADER scores among family members’ early symptoms of ADRD. The top five
keywords in Topic 4 were “hallucination,” “cat,” “see,”
all the topics (Figure 1).
“real,” and “brain.” It appears that the first signs of ADRD
Topic 3 was identified by BertTopic and manually in family members started to surface when they began to
labeled as “financial struggles of caregivers.” This topic hallucinate and were neglecting their pet cats. As shown

Volume 1 Issue 3 (2024) 130 doi: 10.36922/aih.3075