Amy Bodde, Ph.D., MPH, to Pave the Way for Groundbreaking Alzheimer's Intervention Tailored for Down Syndrome Adults

Amy Bodde, Ph.D., MPH, a distinguished researcher at the University of Kansas Medical Center (KUMC), has been granted a prestigious National Institutes of Health (NIH) INCLUDE initiative KL2 Scholar slot. The KL2 program is tailored to cultivate the skills of early career faculty like Bodde, fostering their interest and expertise in pioneering clinical and translational research. The KL2 program, embedded within Frontiers Clinical and Translational Science Institute, is dedicated to attracting and embracing a diverse cohort of emerging researchers, nurturing their potential in groundbreaking research within a collaborative and supportive environment.

The KL2 program's comprehensive support enables scholars to delve deeply into their research aspirations, fostering innovation and propelling them towards becoming future leaders in their respective fields. This grant will support Bodde's pioneering efforts in adapting and evaluating a revolutionary intervention, Reducing Disability in Alzheimer’s Disease for Down Syndrome (RDAD-DS), aimed at enhancing the lives of aging adults with Down Syndrome and their caregivers.

The prevalence of aging adults with Down Syndrome has significantly risen, resulting in an increased risk of Alzheimer’s Disease. The incidence of dementia in adults with Down Syndrome reaches over 90% by age 65, marking it as the primary cause of mortality among this population. To address this critical need, Bodde's project, RDAD-DS, seeks to introduce a 12-week intervention tailored specifically for individuals with Down Syndrome and their caregivers.

RDAD, initially designed for typically developed adults with dementia and their caregivers, has demonstrated effectiveness in enhancing physical activity and reducing behavioral symptoms, ultimately alleviating caregiver burden. However, existing interventions do not cater to the unique needs of adults with Down Syndrome.

“The life expectancy for those with Down Syndrome has doubled over the past 50 years. While this is a wonderful advancement due to improved medical care and social inclusion, it has also revealed a high prevalence and early onset of Alzheimer’s disease in this population,” she said. “Caregivers, often parents or siblings, need knowledge and resources to help their loved ones with Down Syndrome maintain their best quality of life as they experience the cognitive and functional declines of Alzheimer’s.

“This research topic is also personal to me, as I saw my own family lovingly care for my aunt with Down Syndrome throughout her life and until her passing. My hope is that by adapting and testing RDAD-DS with the input of those with Down Syndrome and their caregivers, we can develop a tailored and effective intervention to promote healthy aging in this population and empower caregivers with dementia-related training. By designing the intervention for remote delivery, I hope that RDAD-DS will have a wide reach to families in underserved areas.”

Bodde’s NIH-supported training will focus on clinical and translational research, enabling her to adapt evidence-based interventions, remotely deliver physical activity interventions, and assess their usability, feasibility, safety, and efficacy. Additionally, she will delve into the physiological and psychosocial aspects of dementia in adults with Down Syndrome.

The outcome of this comprehensive training will equip Bodde with the expertise to spearhead the development of RDAD-DS, which has the potential to significantly impact the public health landscape by supporting adults with Down Syndrome and their caregivers.

Bodde aims to utilize her training to pave the way for a R01 funding proposal, facilitating a robust randomized trial for evaluating the efficacy of the RDAD-DS intervention. Should this intervention prove successful, its remote delivery model could offer a groundbreaking solution for adults with Down Syndrome and their caregivers globally.

“I’m extremely grateful for the INCLUDE project at the NIH which allocates specific funds for research in Down Syndrome,” she said. “This INCLUDE supplement affords me the opportunity for additional training in Alzheimer’s Disease care and rigorous research methodology so I can employ the best methods for designing effective interventions which respond to the special needs of this population. I am thrilled to be a part of the KL2 Scholar’s program and to develop in my research career alongside other early career scholars and with the best of mentors.”  

Bodde's work holds syndrome immense promise for transforming the lives of individuals with Down Syndrome impacted by Alzheimer’s and reducing the substantial burden on their caregivers.