Advance Care Planning for Older Individuals with Down Syndrome Experiencing Early Onset and Accelerated Dementia: A Mechanistic Evaluation
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Project Summary Older individuals with Down syndrome are disproportionally affected by dementia. Down syndrome is the most common genetic etiology of intellectual disability affecting >400,000 individuals nationally, and its prevalence is historically increasing, with ~5,300 babies born annually in the U.S. In the last 25 years, the average life expectancy for individuals with Down syndrome has more than doubled from 25 to 60 years. Though individuals with Down syndrome are born with serious, life-limiting illnesses, they face the additional hardship of early-onset and accelerated dementia, resulting in the #1 contributor of death in this population. Despite the pressing need, no standardized methods exist to prepare older individuals with Down syndrome and their caregivers for end-of- life care anticipated to be complicated by early-onset and accelerated dementia. Conversations between patients with serious illness and their clinicians about values, goals, and prognosis (i.e., serious illness conversations, SICs) can lead to well-informed shared decision-making and improved quality of life. The Serious Illness Care Program (SICP, a multi-modal intervention that includes a structured Conversation Guide and clinician training, designed to support clinicians to have earlier, person-centered SICs), has demonstrated significant improvements in access to and timing of SICs, positive patient and clinician experiences, and lower rates of anxiety and depression for patients in various settings. SICP is disseminated widely in 87 countries with >28,000 clinicians reaching >378,000 patients. However, SICP is not tailored to older individuals with Down syndrome experiencing dementia. This vulnerable population faces intellectual, communication, behavioral, and cognitive challenges that often result in mistreatment during clinical encounters, which leads to lower rates of trust, respect, and fairness by clinicians. At the same time, clinicians express challenges in not knowing how to engage with these patients and focus on caregivers for conversations, resulting in suboptimal care. Thus, our objective is to tailor SICP for older individuals with Down syndrome and their caregivers and determine the mechanism of the refined SICP (i.e., SICPDown) to lead to patient-centered care in a single center, mechanistic randomized trial of 100 older individuals with Down syndrome and their caregivers. Our central hypothesis is that SICPDown will lead to similar improvement in patient-centered outcomes. We will refine SICP to meet the needs of older individuals with Down syndrome (Aim 1) and clinicians in various care settings (Aim 2), then determine the mechanism of SICP on patient-centered advance care planning (Aim 3). The primary outcome will be mechanistic: anxiety, prognostic understanding, and feeling heard and understood about values and goals. Our study results will deepen our understanding of how SICs, tailored to older individuals with Down syndrome, lead to patient- centered care and serve as a rich resource to develop evidence-based strategies to tailor SICs for other 2.3 million aging adults with intellectual disability, meeting priorities of the NIH INCLUDE Project and its NIA goals, and the National Alzheimer’s Project Act (Public Law 111-375).
