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Artificial Intelligence in Health ADRD caregiver experiences on Reddit

1. Introduction gathered data on caregivers’ well-being through methods
such as questionnaires and interviews, and recent trends
8,9
Alzheimer’s disease and related dementias (ADRD) are a saw the emerging data analysis of caregiver experiences
group of neurodegenerative disorders that are characterized from various social media platforms – an investigation
by impaired thinking and independence. In 2023, an strategy that could avoid response bias. 10,11 Social media
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estimated 6.7 million Americans aged 65 and older were platforms allow for the collection of large amounts of
living with ADRD. ADRD features a gradual development, content in the form of users’ health-care knowledge,
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and as the disease progresses, behavioral and cognitive experiences, symptoms, products, doctors, and medicines
functions decline, affecting memory, comprehension, for research purposes and offer insights from otherwise
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language, attention, reasoning, and judgment. People hard-to-reach populations. 12
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living with ADRD experience a range of symptoms that
interfere with daily life. Memory loss, confusion, and poor For instance, empirical research is increasingly turning
judgment are often the first signs that appear in the affected to Reddit as a source of information due to its large user
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individuals. Overtime, as the disease progresses from base and highly specialized subreddit communities.
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mild to moderate and from moderate to severe, additional Compared to other social media platforms, Reddit has a
compounding symptoms arise such as withdrawal from lower noise-to-information ratio, which makes it ideal for
social activities, shortened attention span, difficulty people who are caring for family members with ADRD.
carrying out familiar tasks, impulsive behavior, changes in Recent studies have begun to analyze Reddit posts to
sleeping patterns, difficulty recognizing friends and family, research the experiences and challenges of caregivers
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and general physical decline. Intensive supervision and of patients with Alzheimer’s disease and other forms of
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care become necessary for patients. Managing increasing dementia. This paper builds on existing studies and
symptoms and needs can be difficult and highly stressful focuses on the important topics of caregivers of family
for patients as well as their families and caregivers. members with Alzheimer’s disease. Data are analyzed
with topic modeling and sentiment analysis. The analysis
Depending on the patient’s circumstances and needs, reveals the major concerns of Alzheimer’s patient’s family
caregiving settings available to ADRD patients vary widely, caregivers, offering insight into future care and assistance
with options for in-home care, adult care centers, long- to this population.
term care facilities, and hospice. Many patients transition
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between care settings, posing a challenge for families, 2. Data and methods
caregivers, and providers to ensure coordinated, continuous
care. In 2020, the total health-care costs for treatment of 2.1. Data source and cleaning
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ADRD was estimated at $305 billion, most of which is To mimic an organic search on Reddit, “caregiving for a
attributed to the cost of care. However, indirect costs of family member with dementia” was entered into the search
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care such as quality of living and informal caregiving are box and searched on Reddit. Using the Reddit API, the
likely underestimated. Patients generally receive increasing most relevant posts were extracted. Reddit API allows for
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care from family members and other unpaid caregivers as the return of information within a post, including user ID,
their disease progresses . It has been estimated that 75% post title, post content, post time, and all comments. In
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of caregiving given to a patient with Alzheimer’s disease is total, 1151 replies were collected.
informal care provided by the patient’s family and friends . Text from posts and comments were preprocessed
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In 2022, more than 11 million family members and unpaid before topic analysis. The goal of preprocessing is to keep
caregivers provided an estimated 18 billion hours of care words that carry essential meaning. Thus, we remove
to people with ADRD. On top of the emotional burden stopwords using NLTK stopwords dictionary. Stopwords
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of caring for a family member with declining cognitive such as “a” and “the” are words that do not convey important
ability, navigating the care system is time-consuming and information and add little to the comprehension of the
costly, extending to family caregivers’ increased risk for text. This step denoises the text input. Next, all words
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negative mental and physical health outcomes. 2 were lemmatized using SpaCy. In this step, all words were
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Family caregivers play a critical role in the quality of life of swapped with their lemma, so that only the content of the
ADRD patients, yet their mental health and support circles words remained. This step ensures that words in different
have been understudied. Research on the experiences and forms are counted as one in the topic analysis.
needs of caregivers would not only benefit other caregivers
in similar situations but also provide insight for health- 2.2. Topic modeling
care providers and researchers to understand and respond To understand the top topics within the Reddit comments,
to the needs of these individuals. Existing studies have we performed topic modeling, a machine learning-based
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Volume 1 Issue 3 (2024) 128 doi: 10.36922/aih.3075