Information Seeking and Technology Use Among Dementia Caregivers: Findings from a Statewide Survey of Diverse Caregivers in the U.S. South

Abstract

AbstractBackgroundFamily caregivers are often tasked with decision making about their loved one’s health care treatment and daily care and have reported that such decision making can be challenging, overwhelming, and stressful (Gaugler et al., 2022; Miller et al., 2016; Ruggiano et al., 2019). For this reason, caregivers often report being highly active in seeking out information to improve their health literacy regarding dementia and caregiving, frequently turning to various information technologies (IT) to gather information (Bangerter et al., 2019; Soong et al., 2020). However, more research is needed on how IT can support health literacy and information seeking for vulnerable caregiver populations, such as caregivers who are rural‐dwelling, low‐income, and those from underserved racial/ethnic groups (Soong et al., 2020).MethodThis project involved a statewide survey of caregivers living in Alabama, a U.S. state that has large populations of rural, African American, and underserved residents. To recruit participants, community‐based organizations distributed flyers and two public radio campaigns made announcements about the project between June 2022 and December 2022. The survey included questions about: the sources participants used to learn more about dementia and caregiving; ease of gathering information from these sources; their level of trust in these sources; their experience with different types of IT; their current information needs; and participant demographics. Univariate and bivariate analyses were performed.ResultSeventy‐eight caregivers completed the survey: 50% identified as African American, 37.2% lived in rural communities, and 30.8% had household incomes of less than $30K per year. The survey revealed several findings regarding information seeking and technology use. Participants reported using an average of 4.8 sources to gather information. Level of trust in some information sources and interest in using certain types of IT for information seeking varied based on some demographics, including race, age, and income.ConclusionThe findings suggest that public education about dementia should not be a one‐size‐fits all approach and that strategizing public health education campaigns by source and technology platform may better facilitate health literacy of sub‐populations of caregivers, especially those who may be underserved or have challenges in navigating health and long‐term care systems.