Alzheimer’s disease is a progressive brain disorder that damages and eventually destroys brain cells, leading to a loss of memory, thinking, other brain functions and ultimately life. Alzheimer’s disease does not only impact those with the disease, but also their caregivers. As the disease progresses, the loss of critical skills make navigating day-to-day living impossible without help from others. Family caregivers or “informal caregivers” provide the majority of long-term care for adults with the disease. Caring for a person with Alzheimer’s disease can take a heavy toll on the health, well-being, employment and finances of caregivers. While caregivers are a crucial part of the care equation, their work is often not well supported or coordinated with medical assessments or care plans. 

This Bass Connections project explored strategies to improve integration of caregivers in clinical care decision-making, with a particular emphasis on enhancing their role in data collection on Alzheimer’s treatment experiences and outcomes. As a first step, the team conducted a literature review on caregiver involvement and integration in Alzheimer’s disease care, focused on identifying gaps, needs and potential strategies. Then, the team pursued interviews with caregivers, patients, clinicians, patient advocacy and community groups and other thought leaders, to discuss key issues identified in the literature review. The team also participated in the Duke Institute for Brain Sciences (DIBS) Discovery Day, where they put together an interactive activity for families to learn about caregiver roles and integration into Alzheimer’s disease care. 

Moving forward, the team plans to convene a public meeting at the Duke-Margolis Center for Health Policy in Washington, DC, to discuss the opportunities and challenges associated with caregiver integration strategies. In addition to exploring these issues, the meeting will aim to ascertain future policy, programmatic and research directions to enhance the development and implementation of these approaches.

Timing

Fall 2018 – Summer 2019  

Team Outputs

Transforming Alzheimer’s Disease Care through Integrating Caregivers (poster by Manish Kumar, Shreya Shah, Gary Wang, Trevor Anderson, Mala Bansal, Max Beck, Lauren Bunch, Zara Porter, Roy Thompson, Corinna Sorenson, Courtney van Houtven, Gillian Schmidler, presented at Bass Connections Showcase, Duke University, April 17, 2019)