Background Dementia prevalence and related caregiving burden are increasing, particularly among Hispanics. We studied the characteristics and mental health of Hispanic caregivers in New York City. Methods We recruited 139 Hispanic family caregivers. We collected data on socio-demographic characteristics and predictors of caregiver burden, measured with the Zarit Caregiver Burden Scale, and depressive symptoms, measured with the Geriatric Depression Scale. Results The mean age was 59.3 ± 10.4 years. The majority of caregivers were daughters and earned less than $30,000 a year. In multivariate analyses with linear regression, lower satisfaction with social networks was associated with higher caregiver burden and a greater number of depressive symptoms. Higher dementia severity was associated with higher caregiver burden, while higher caregiver comorbidities were associated with higher depressive symptoms. Conclusions Caregiver comorbidities and satisfaction with social support may be targets for intervention that could improve caregiver burden and depressive symptoms among Hispanic caregivers.

Although there were no significant intervention group differences, both interventions resulted in significantly reduced burden for Hispanic caregivers at 6 months, particularly for spouses and older caregivers.

We randomly extracted Tweets mentioning dementia/Alzheimer’s caregiving-related terms (n= 58,094) from Aug 23, 2019, to Sep 14, 2020, via an API. We applied a clustering algorithm and natural language processing (NLP) to publicly available English Tweets to detect topics and sentiment. We compared emotional valence scores of Tweets from before (through the end of 2019) and after the beginning of the COVID-19 pandemic (2020-). Prevalence of topics related to caregiver emotional distress (e.g., depression, helplessness, stigma, loneliness, elder abuse) and caregiver coping (e.g., resilience, love, reading books) increased, and topics related to late-stage dementia caregiving (e.g., nursing home placement, hospice, palliative care) decreased during the pandemic. The mean emotional valence score significantly decreased from 1.18 (SD 1.57; range -7.1 to 7.9) to 0.86 (SD 1.57; range -5.5 to 6.85) after the advent of COVID-19 (difference -0.32 CI: -0.35, -0.29). The application of topic modeling and sentiment analysis to streaming social media provides a foundation for research insights regarding mental health needs for family caregivers of a person with ADRD during COVID-19 pandemic.

We compared emotional valence scores as determined via machine learning approaches to human-coded scores of direct messages on Twitter from our 2,301 followers during a Twitter-based clinical trial screening for Hispanic and African American family caregivers of persons with dementia. We manually assigned emotional valence scores to 249 randomly selected direct Twitter messages from our followers (N=2,301), then we applied three machine learning sentiment analysis algorithms to extract emotional valence scores for each message and compared their mean scores to the human coding results. The aggregated mean emotional scores from the natural language processing were slightly positive, while the mean score from human coding as a gold standard was negative. Clusters of strongly negative sentiments were observed in followers’ responses to being found non-eligible for the study, indicating a significant need for alternative strategies to provide similar research opportunities to non-eligible family caregivers.

We applied social network analysis (SNA) on Tweets to compare Hispanic and Black dementia caregiving networks. We randomly extracted Tweets mentioning dementia caregiving and related terms from corpora collected daily via the Twitter API from September 1 to December 31, 2019 (initial corpus: n = 2,742,539 Tweets, random sample n = 549,380 English Tweets, n= 185,684 Spanish Tweets). After removing bot-generated Tweets, we first applied a lexicon-based demographic inference algorithm to automatically identify Tweets likely authored by Black and Hispanic individuals using Python (n = 114,511 English, n = 1,185 Spanish). Then, using ORA, we computed network measures at macro, meso, and micro levels and applied the Louvain clustering algorithm to detect groups within each Hispanic and Black caregiving network. Both networks contained a similar proportion of dyads and triads (Hispanic 88.2%, Black 88.9%), while the Black caregiving network included a slightly larger proportion of isolates (Hispanic 0.8%, Black 4.0%). This study provides useful baseline information on the composition of existing large groups and small groups. In addition, this work provides useful guidance for future recruitment strategies and the design of social support interventions regarding emotional needs for Hispanic and Black dementia caregivers.