Findings from a National Consensus Conference: Interdisciplinary Action Steps to Enhance Support for Dementia Family Caregivers

Abstract

AbstractBackgroundIn 2021, loved ones of individuals with Alzheimer’s disease and related dementias (ADRD) provided an estimated $271 billion worth of unpaid care (Alzheimer’s Association, 2022). While there is mounting consensus for the need to support caregivers, interdisciplinary collaborations are necessary to facilitate the translation of evidence‐based programs into real‐world solutions (Gitlin et al., 2015).MethodsWith funding from the National Institute on Aging, Weill Cornell Medicine hosted “The 2021 Conference on Engaging Family and Other Unpaid Caregivers of People with Dementia in Healthcare Delivery.” The hybrid (virtual/in‐person) event convened interdisciplinary experts from across the nation to establish a policy‐ and practice‐ aligned research agenda aimed at advancing the science of ADRD caregiving. These experts consisted of caregivers of people with ADRD, healthcare providers, researchers, health plan providers, and non‐profit organizations. The conference involved expert panels on caregiving‐related topics (e.g., public policies, intervention research), small group breakout sessions to identify major recommendations, and prioritization of the recommendations through voting.ResultsThe resulting recommendations centered on five topic areas: caregiver identification and assessment, caregiver training, provider training, provider reimbursement, and technology. Two cross‐cutting themes—the need for implementation science and leveraging frameworks of intersectionality— permeated throughout all recommendations. The committee recommended actionable next steps to address the need for training and support across the care continuum, acknowledging that a one‐size‐fits‐all approach is inadequate in addressing the needs of a group as diverse as ADRD caregivers (Alzheimer’s Association, 2022). The group advocated for the development of training programs tailored to the care recipient’s disease stage and caregiver’s preferences.ConclusionThe Alzheimer’s Association and similar organizations are uniquely positioned to support work in the area of caregiver training. These organizations could collaborate with researchers to develop or expand opportunities to aid ADRD caregivers in medical treatment protocols, financial planning, and end‐of‐life preparation. Medical practices could then implement referral protocols connecting ADRD caregivers with local Alzheimer’s Association Chapters, providing much‐needed support. Bridging the gap between training and support could lead to positive outcomes for caregivers, their care recipients, and society at large (Nichols et al., 2017; Rowe et al., 2016; Guterman et al., 2019).