Abstract
BackgroundPatients with Alzheimer’s disease and related dementias (ADRD) and traumatic brain injury (TBI) and their caregivers require cognitive and behavioral symptom management, interdisciplinary care, support for caregivers, and seamless care coordination between providers. Caring for someone with ADRD or TBI is associated with higher rates of psychological morbidity and burden, social isolation, financial hardship, and deterioration of physical health. Tremendous need exists for primary care–based interventions that concurrently address the care needs of dyads and aim to improve care and outcomes for both individuals with ADRD and TBI and their family caregivers.MethodsThe Aging Brain Care Acquiring New Skills While Enhancing Remaining Strengths (ABC ANSWERS) study is a randomized controlled trial that tests the effectiveness of an intervention based on two evidence-based programs that have been developed for and previously tested in populations with ADRD, TBI, stroke, and late-life depression and/or who have survived an intensive care unit stay. This study includes 200 dyads comprised of a veteran with a diagnosis of ADRD or TBI and the veteran’s primary informal caregiver. Dyads are randomized to receive the ABC ANSWERS intervention or routine Veterans Health Administration (VHA) primary care with a standardized educational and resource information packet. Data collection occurs at baseline and three follow-up time points (3 months, 6 months, and 12 months). The primary outcome is caregiver quality of life (QoL). A secondary measure for the caregiver is caregiver burden. Secondary measures for both the veteran and caregiver include symptoms of depression and anxiety.DiscussionThe ABC ANSWERS intervention integrates common features of an evidence-based collaborative care model for brain health while concurrently attending to the implementation barriers of delivering care and skills to dyads. We hypothesize that caregivers in dyads randomized to the ABC ANSWERS program will experience higher levels of QoL and lower levels of depression, anxiety, dyadic strain, and caregiver burden at 12 months than those receiving usual VHA primary care.Trial registrationClinicalTrials.gov, NCT03397667. Registered on 12 January 2018.
Highlights
Patients with Alzheimer’s disease and related dementias (ADRD) and traumatic brain injury (TBI) and their caregivers require cognitive and behavioral symptom management, interdisciplinary care, support for caregivers, and seamless care coordination between providers
We hypothesize that caregivers in dyads randomized to the ABC ANSWERS program will experience higher levels of quality of life (QoL) and lower levels of depressive and anxiety symptoms, dyadic strain, and caregiver burden at 12 months than those receiving usual Veterans Health Administration (VHA) primary care
Within each stratum defined by the veteran’s primary diagnosis (ADRD or TBI), dyads are randomized 1:1 to receive ABC ANSWERS or usual primary care provided by VHA Patient Aligned Care Teams (PACTs)
Summary
ABC ANSWERS study design ABC ANSWERS is a 3-year randomized controlled trial that includes 200 dyads, comprised of a veteran with a diagnosis of ADRD or TBI and the veteran’s primary informal caregiver. Caregivers are included if they (1) have been identified as the primary person who provides, or would provide if needed, the majority of assistance to the individual; (2) have plans of providing care at least for 1 year or longer; (3) are available to participate in the intervention protocol with veterans; (4) read and speak English; and (5) have access to a telephone. Description of the intervention ABC ANSWERS has two main goals: (1) comanage and support the practice of primary care providers (PCPs) to care for persons with ADRD or TBI (macro, system-level change) and (2) enhance self-management skills of the caregiver and veteran to maximize their coping behaviors by building on the dyads’ strengths and abilities while compensating for cognitive and functional losses (micro, dyad-level change). Use of brief, structured validated assessments that are comprehensive to increase scalability
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