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. 2024 Dec 24:7:e67992.
doi: 10.2196/67992.

The CareVirtue Digital Journal for Family and Friend Caregivers of People Living With Alzheimer Disease and Related Dementias: Exploratory Topic Modeling and User Engagement Study

Andrew C Pickett  1 , Danny Valdez  2 , Lillian A White  1 , Priya Loganathar  3 , Anna Linden  3 , Justin J Boutilier  4 , Clover Caldwell  1 , Christian Elliott  5 , Matthew Zuraw  5 , Nicole E Werner  1
Affiliations

The CareVirtue Digital Journal for Family and Friend Caregivers of People Living With Alzheimer Disease and Related Dementias: Exploratory Topic Modeling and User Engagement Study

Andrew C Pickett et al. JMIR Aging. .

Abstract

Background: As Alzheimer disease (AD) and AD-related dementias (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 providing care. CareVirtue is a web-based 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 aims to use 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=1555 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. We then examined relationships between identified topics; semantic sentiment; and use-related data, including post word count and self-reported mood.

Results: We identified 5 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 5-topic model demonstrated adequate fit to the data, having the highest coherence score (0.41) 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 the 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 the most positive in the early evening when 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.

Keywords: Alzheimer disease; CareVirtue; care network; caregiving; computational informatics; dementia; digital journaling tool; elder; family; gerontology; intervention; neurodegeneration; online platform; open text; sentiment analysis; social support; technology; thematic analysis; topic modeling.

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Conflict of interest statement

Conflicts of Interest: CE is the founder and chief executive officer of Whiplash Technology and the developer of CareVirtue. MZ is the Customer Service Implementation Manager for Whiplash Technology and supports the development of CareVirtue; is an Associate for HFC, which is a 501(c)3 with a mission of bringing light to Alzheimer; and sits on the Board of Directors for that National Adult Day Services Association (NADSA).

Figures

Figure 1
Figure 1
CareVirtue journal.
Figure 2
Figure 2
Similarity matrix demonstrating bivariate relationships between topics.
Figure 3
Figure 3
Intertopic distance map visualizing relatedness and relative size of topics observed.
Figure 4
Figure 4
Box-and-whisker plot showing group differences in user sentiment by self-reported mood rating.
Figure 5
Figure 5
Box-and-whisker plot showing group differences in user sentiment by time of day.
See this image and copyright information in PMC

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