Using Natural Language Processing to Identify Social Support Needs Among African American and Hispanic Family Caregivers for Persons with Dementia (Preprint)

BACKGROUND Older African and Hispanic Americans are disproportionately more likely than older White Americans to have dementia. OBJECTIVE To assess social support needs among African American and Hispanic dementia caregivers to establish a foundation that can inform designs for culturally sensitive social support interventions. METHODS Design: This mixed-methods study applied natural language processing (NLP) on qualitative data. Setting: Academic medical center in New York Participants: Volunteer sample of seven experts participated together in the series of in-depth expert panels. The four dementia caregivers were recruited from the dementia caregiver registry, as well as via flyers posted within and outside of the institution. Health professionals were recruited from Columbia University Irving Medical Center. Eligible caregivers included those who had been a primary family dementia caregiver for at least three years, spoke English or Spanish, and used text messaging. Eligible professionals included those with at least 5 years of experience and publication on dementia caregiving. An eligible health communication specialist included one with a degree in health literacy. RESULTS A total of 72 topics (38 needs, 34 strategies, 2,322 terms) were identified through the NLP process: 1) 21 topics regarding disease, medication and communication from the information support corpus (coherence: 0.470, 38.77%); 2) 20 topics regarding care coordination and social services from the instrumental support corpus (coherence: 0.513, 23.97%); 3) 21 topics regarding psychological distress and copying from the emotional support corpus (coherence: 0.509, 21.25%); 4) 9 topics regarding self-evaluations on caregiving from the appraisal support corpus (coherence: 0.461, 15.99%). CONCLUSIONS This study is among the first to use NLP on qualitative data gathered from expert panels. New findings on unmet needs include for providers to disclose disease prognosis, to understand cultural norms on seizure treatment as a result of side effect of donepezil, and to familiarize with culturally sensitive terminologies and routine medications for dementia to reduce distrust. CLINICALTRIAL NCT03865498