Cultural adaptation of a mobile caregiver intervention for Hispanic dementia caregivers

Trustees Of Indiana University, Bloomington IN

Investigators

Abstract

Project Summary Hispanics are the fastest growing minority population in the U.S., they are 1.5 times more likely to develop Alzheimer’s disease and related dementias (ADRD), and Hispanic ADRD informal caregivers experience more burden the White non-Hispanics. There is an identified need to adapt interventions and make them culturally relevant to meet the needs of Hispanic ADRD informal caregivers. My past research has focused on examining cultural factors as they related to ADRD cognition and symptomatology. In the proposed K23 application, I aim to fill an existing gap in my training by applying the knowledge I’ve gained in regard to cultural factors among Hispanic ADRD populations and gain experience and training in clinical trial research and methodology. I plan to pursue a career as an independently funded investigator in the field of culturally tailored interventions for ADRD Hispanic caregivers and patients. The proposed study will use a mixed method approach to conduct the necessary stage 0 and 1A activities of the NIH Stage model to assess needs of Hispanic ADRD informal caregivers and develop modifications to Brain CareNotes, a secure mobile telehealth application for informal caregivers to manage behavioral and psychological symptoms of dementia (BPSD) with the aid of a remote care coach. Preliminary data on a general sample have shown that BCN reduced caregiver burden (Neuropsychiatric Inventory [NPI]-Caregiver Distress) and BPSD at 3 and 6 months. Culturally tailoring this intervention requires more than just Spanish translation, but integration of cultural factors which effect psychological and neurological functioning in both caregivers and ADRD patients. Guided by an equity focused framework, PROGRESS Plus, I propose to culturally tailor BCN for Hispanic ADRD caregivers. This will be accomplished by first conducting a needs assessment among Hispanic ADRD informal caregivers (aim 1) in relation to managing BPSD and how equity factors play a role. I will then use participatory co-design methods to adapt and modify Brain CareNotes (aim 2). Once the cultural adaptations are complete, I will conduct a pilot study to ensure a future R01 proposed RCT will be powered to detect reduction in Hispanic caregiver burden and BPSD among ADRD patients (NPI scores).