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Artificial Intelligence in Health ADRD caregiver experiences on Reddit

Furthermore, we employed a sentiment analysis tool
VADER as an additional method in combination with
topic analysis to further validate how caregivers feel toward
caring a family member with dementia. 25-28
4.2. Burden of ADRD on family members

Our findings point broadly to the substantial impact of
ADRD on family caregivers. The physical, emotional, and
mental stress of diagnosis extends beyond the patient and
to those who care for them as the disease progresses. There
is no cure for ADRD, so as patients’ cognitive abilities
decline, family members become their advocates and care
experts. The Reddit comments that we analyzed revealed
high levels of distress among family members, which is
associated with their increase in responsibilities, difficulty
navigating care options, disheartening interactions with
symptomatic loved ones, and the strain it puts on other
areas of their lives. Some illustrative comments are given
Figure 3. Intertopic distance map for all topics. Source: By authors in the following:
“I feel I have no life and my life revolves around
4. Discussion taking care of my dad.” (Topic 0)
“I’ve worked as a nurse for many, many years, with
The objective of this study was to determine how Reddit the last 15 of those being in aged care specialising in
provides online support to caregivers of ADRD. By care & it’s always hardest on the family.” (Topic 0)
performing an organic search and collecting the top “My Mom is the sole caregiver and it has been
Reddit postings, we revealed the most prominent topics extremely hard on her as you’d expect. My Dad is
of discussion among family caregivers of ADRD patients. in a long term care facility now and she’s there with
These results bring to light to perspectives and experiences him everyday. I feel like Alzheimers has taken away
of caregivers and determine the sentiment of Reddit both of my parents, my Dad but also my Mom.”
community forums. Overall, the sentiment of Reddit posts (Topic 1)
was neutral but leaned toward a positive skew because of “I love my grandma so much and it’s always so
the support that Reddit users who were family caregivers disheartening to visit her in the state that she’s in.”
of ADRD patients received. (Topic 0)
4.1. Building on previous research 4.3. Reddit as a resource and form of support for

Topic modeling has been frequently used to understand caregivers
unstructured data such as those from social media. Despite the toll that the disease takes on caregivers, our
Previous systematic review has evaluated the use of findings revealed primarily positive comments in the
topic modeling on social media and overall, it is effective Reddit forum. This points to the sense of community and
at understanding themes but has its limitations. We support that the Reddit online community offers. For
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employed standard tokenization and the removal of stop instance, when a user posts a comment on Reddit that
words, which is essential to the analysis of topics. We, shares about their caregiving experiences, challenges, or
however, did not evaluate discussions on social media that questions, the other users in the forum who have gone
were multilingual. It is true that multilingual discussions through similar caregiving situations respond by sharing
exist on Reddit but, for the purposes of this study, we only their advice, empathy, and condolences. Several illustrative
collected texts that were in English. In addition, there are comments are presented below:
various topic models that can be used, which can dictate “I’m so sorry you are so overwhelmed. I hope you
the interpretation of the data. However, based on this have someone there you can talk to about this,
systematic review, LDA analysis is the most frequently used and relatives to give you a break from caretaking.”
method as it provides the most robust and clean sectioning (Topic 1)
of data into topics. 21-24 LDA topic analysis has also been “You have every right to feel overwhelmed to see
used across various dimensions of health and countries. her deteriorate in front of you and want the best
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Volume 1 Issue 3 (2024) 132 doi: 10.36922/aih.3075