A communication-based intervention for early stage dementia patient-caregiver dyads to increase engagement in advance care planning and reduce caregiver burden

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PROJECT SUMMARY The progressive cognitive decline that is the hallmark of dementia results in the eventual inability to make healthcare decisions. As a result, caregivers play an inevitable and central role in end-of-life (EOL) care. Yet, few patients with Alzheimer’s Disease and Related Dementias (ADRD; 22-39%) engage in advance care planning (ACP) or discuss EOL care wishes with their caregivers. Few interventions designed to increase engagement in ACP and completion of advance directives in ADRD patients have been developed and even fewer include both the caregiver and the ADRD patient prior to the loss of decision-making capacity. The proposed study aims to develop, and pilot test a communication-based intervention to improve ADRD patient and caregiver preparedness for and engagement in ACP, completion of advance directives, and knowledge of disease trajectory. Informed by prior work of the study team in ACP and EOL care in patient-caregiver dyads and interventions for persons with mild cognitive impairment and dementia and their caregivers, the goals of this study are to: (1) develop a communication-based intervention for ADRD patients and caregivers that includes theoretically grounded communication strategies (e.g., acknowledgment, validation of fears) and distress management techniques (e.g., deep breathing, muscle relaxation); (2) evaluate the feasibility and acceptability of the intervention; and (3) test the preliminary efficacy of the intervention on ADRD patients’ and caregivers’ preparedness for and engagement in ACP, completion of advance directives, and understanding of disease trajectory (primary outcomes) as well as concordance on the PWD’s healthcare values, perceived need for ACP, psychological distress, communication quality, and caregiver burden (secondary outcomes). To meet these goals, we will collect feedback from patients and their caregivers (n=10 dyads) and clinical and research experts (n=10) to adapt and refine the intervention. Next, we will pilot test the intervention with an open trial of n=30 patient-caregiver dyads and assess outcomes at baseline, post-intervention, and three months later to determine the feasibility, acceptability, and preliminary efficacy of the intervention on primary and secondary outcomes. These results will inform a future NIH R01 application to conduct a large-scale randomized clinical trial of intervention efficacy. Grounded in established theories of inhibitory learning and social-cognitive processing, the present study takes the novel approach of integrating communication and distress management techniques to improve ADRD patients’ and caregivers’ ability to discuss difficult EOL topics while managing the distress associated with these topics. It is expected that these results will provide a strong foundation for a program of research focused on including ADRD patients prior to the loss of decision- making capacity into interventions as a novel and innovative way to improve engagement in ACP, increase rates of goal-concordant care, and reduce receipt of futile, aggressive EOL care.