The Caregiver Resource Room: Enhancing Support for Caregivers of Alzheimer's Disease and Related Dementias (ADRD)

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With nearly 6 million cases of Alzheimer’s disease and related dementias (ADRD) diagnosed in the United States in 2019, the health and well-being of ADRD caregivers is of critical importance. Promoting the health and well-being of ADRD caregivers is an effective way to support these unpaid staples of ADRD care. Although interventions targeting ADRD caregivers continues to accelerate, little attention has been paid to caregivers’ use of supportive services, which remains strikingly low. The objective of this K99/R00 application is to enable Dr. Falzarano to develop the necessary expertise to design, implement, and evaluate studies focused on leveraging technology to support and address ADRD caregivers’ multifarious needs. In the K99 phase, Dr. Falzarano will work toward achieving five training objectives that will prepare her to transition to become an independent investigator who designs and evaluates evidence-based technologies to enhance tailored caregiver support. First, she will extend her knowledge in substantive areas including dementia caregiving and front-end and back-end software development. Second, she will learn how to develop, implement, and test behavioral interventions with an emphasis on collaboration with community partners. Third, she will receive training in statistical methods to examine feasibility, acceptability, and preliminary effectiveness in randomized controlled trials (RCTs). Fourth, she will learn about measurement development and psychometric validation of assessments for ADRD caregivers. Fifth, Dr. Falzarano will pursue professional development activities, particularly in the areas of grant writing, leadership, and integration of research and web development teams. The four proposed research aims were chosen to complement the areas identified for career development. Aim 1a will provide the requisite training and experiences to provide Dr. Falzarano with the critical skills needed to conduct the proposed study. Aim 1b will include interviews with ADRD caregivers to identify needs, awareness of, barriers to, and willingness to use services. Aim 1c will leverage key stakeholder (dementia-care experts) input to identify existing services corresponding to areas of need identified in Aim 1b. Aim 2 will leverage data collected from caregivers and stakeholders to inform the iterative development and design of the Caregiver Resource Room (CRR) website, which will include a digital self-assessment tool using machine learning models to identify and categorize needs and provide an output of targeted service recommendations. Aim 3 will include an analysis of the tool’s content, design, features, and services output, which will be iteratively refined based on ADRD caregiver feedback. A randomized controlled trial will be conducted in Aim 4 to determine the feasibility, acceptability, and preliminary efficacy of the CRR as a tool to enhance awareness of and access to relevant services to address unmet needs and improve mental health. The proposed research is well-aligned with the NIA’s strategic initiative to foster the development of research scientists in aging and to develop and test promising interventions to improve ADRD caregiver outcomes.