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Artificial Intelligence in Health ADRD caregiver experiences on Reddit

care for her. It’s a total disruption to your life with caregivers struggle to manage. Reddit’s candid format
added responsibilities to have to suddenly care for brings unbiased perspectives and insight into the way
someone with.” (Topic 1) that resources, tools, and educational services should be
“Don’t be *too* hard on yourself if possible. And diverted in health-care settings for caregivers and patients.
if you ever want to talk with (or at) someone that A representative feedback below illustrates this:
might be able to relate a bit you (and anyone else “The hardest part for me has been dealing with the
dealing with this kind of thing) are absolutely, anger, paranoia, and confabulation that my mom
seriously, earnestly, always welcome to message presents with.” (Topic 1)
me.” (Topic 1)
“Good luck. Please remember to forgive yourself for 5. Limitations
any frustration you feel. It is natural, normal, and A limitation of this study is its reliance on Reddit for
would be weird for you not to have any.” (Topic 0) data, which, despite providing a rich dataset of caregiver
As family members manage numerous symptoms experiences, might not capture the full spectrum of
that progress over time and vary across ADRD patients, perspectives available on the array of social media
Reddit serves as a forum for caregivers to share tips and platforms. Incorporating data from other platforms such
recommendations that they have learned. Navigating as Facebook groups, Twitter, and other online forums
the care systems, symptoms, and treatment for ADRD is could offer greater insight. Different platforms often cater
complex and daunting. For caregivers researching their to diverse demographics and feature varied caregiving
loved ones’ symptoms and care situations, Reddit serves experiences, which could enrich the overall analysis by
as a wealth of knowledge curated by those with first-hand presenting a broader range of insights. For this study, we
experience. Our findings point to Reddit as a resource to focused on using Reddit data because of its specific forums
medical for patient care management, supplementary to the for ADRD caregivers.
treatment and advice that medical practitioners provide. A second limitation of the current study is its cross-
Several illustrative comments are shown in the following: sectional design, which does not track changes in
“My wife and I have been going through it with discussions and sentiments of ADRD caregivers over time.
her dad for several years now. He has and is just With the anonymous nature of Reddit, we are unable to
now starting to have issues with urine control. track users longitudinally. A longitudinal study would
We believe it’s a side effect from one of his meds. provide valuable insights into how caregiving challenges
I advise you check her meds and make adjustments and needs evolve, reflecting the dynamic nature of
if you can.” (Topic 0) caregiver experiences as the disease progresses or in
“We are looking for a memory care facility rather response to changes in social and health care that ADRD
than a nursing home and I recommend you family members receive. Such an approach would allow
research the same.” (Topic 0) for the identification of trends and shifts in caregiver
“After she started becoming more physical with concerns, offering a deeper understanding of the temporal
me we decided to put her in a secured facility dynamics at play. However, the anonymity of this social
(so she wouldn’t wander off) It was great! They media data is also critical to capturing organic and honest
had activities and a routine for her which really personal caregiving experiences. Research should continue
eased my guilt for placing her there. Maybe that’s to prioritize privacy protections and confidentiality for this
something you should consider.” (Topic 1) social media data.
This study underlines the importance of Reddit as a
resource for caregivers who may be looking for a forum for 6. Future directions
managing care, sharing experiences, and finding support. In future studies, new artificial intelligence (AI)-based
approaches for the analysis of caregiver discussions should
4.4. Reddit as a resource for practitioners, be explored. Specifically, transformer-based models, such
researchers, and health-care organizations
as GPT-3 and its iterations, could provide a more nuanced
While it is evident that Reddit forums act as a form of understanding of context, sentiment, and emotional
support and guidance for caregivers, our findings can undertones. The next step in subsequent studies should be
also be applied in professional health-care settings. The to test these new generative AI tools to determine whether
sentiment analysis of recurring topics in Reddit threads they can match or surpass the performance of currently
related to Alzheimer’s disease informs health-care validated natural language processing techniques. This
providers of some of the most common symptoms that would enhance the field and also ensure that we evaluate

Volume 1 Issue 3 (2024) 133 doi: 10.36922/aih.3075