Exploratory topic modeling and user engagement with a digital journaling tool for family and friend caregivers of people living with Alzheimer’s disease (AD) and related dementias (AD/ADRD)
ABSTRACT
Background:
As Alzheimer’s Disease (AD) and AD-related dementias (AD/ADRD) progress, individuals increasingly require assistance from unpaid, informal caregivers to support them in activities of daily living. These caregivers may experience high levels of financial, mental, and physical strain associated with of providing care. CareVirtue is an online tool created to connect and support multiple individuals across a care network to coordinate care activities and share important information, thereby reducing care burden.
Objective:
This study employs a computational informatics approach to thematically analyze open text written by AD/ADRD caregivers in the CareVirtue platform. We then explore relationships between identified themes and use patterns.
Methods:
We analyzed journal posts (n=1,555 posts; 170,212 words) generated by 51 unique users of the CareVirtue platform. Latent themes were identified using a neural network approach to topic modeling. We calculated a sentiment score for each post using the Valence Aware Dictionary and Sentiment Reasoner (VADER). We then examined relationships between identified topics, semantic sentiment, and use-related data, including post word count and self-reported mood.
Results:
We identified five primary topics in users’ journal posts, including descriptions of specific events, professional and medical care, routine daily activities, nighttime symptoms, and bathroom/ toileting issues. This five-topic model demonstrated adequate fit to the data, having the highest coherence score (.41) among those tested. We observed group differences across these topics in both word count and semantic sentiment. Further, posts made in the evening were both longer and more semantically positive than other times of day.
Conclusions:
Users of the CareVirtue platform journaled about a variety of different topics, including generalized experiences and specific behavioral symptomology of AD/ADRD, suggesting a desire to record and share broadly across the care network. Posts were most positive in the early evening, when used the tool was used habitually, rather than when writing about acute events or symptomology. We discuss the value of embedding informatics-based tools into digital interventions to facilitate real-time content delivery.
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