Bass Connections: Transforming Alzheimer’s Disease Care Through Integrating Caregivers

Duke-Margolis has applied for and received funding for a Duke University Bass Connections project focused on Alzheimer's Disease and caregivers.

Alzheimer’s disease (AD) 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. Currently, AD is the sixth leading cause of death in the United States and is the only one of the top ten diseases without treatment to prevent, cure, or slow its progression. Over five million Americans are living with AD, with projections that as many as 16 million will have the disease by 2050. AD does not only impact those with the disease, but also their caregivers. As the disease progresses, the loss of reasoning ability, language, decision-making ability, judgment, and other critical skills make navigating day-to-day living impossible without help from others, most often family members or friends. In fact, family caregivers or “informal caregivers” provide the majority of long-term care for adults with the disease. Caring for a person with AD can take a heavy toll on the health, well-being, employment, and finances of caregivers, which has important implications for both the caregiver and care recipient. To that end, AD is often called a family disease, necessitating that effective treatment address the needs of the entire family.

While caregivers are a crucial part of the care equation for AD, their work is often not well supported or well-coordinated with medical assessments or care plans. For example, caregivers are not currently included in the medical records of patients or involved or reflected in monitoring of outcomes associated with the disease and/or treatment. When patients are no longer able to report outcomes for themselves, there is not currently a way to transition to caregiver-reported outcomes. This creates a missed opportunity for physicians and other stakeholders to gather additional information on AD patients. Incorporating the perspective of and input from caregivers could help build a more complete picture of the AD patient and potentially improve care. For example, using cell phone apps and other tools, caregivers could be an important source of information on patient status and trends. Moreover, comprehensive and accurate outcomes assessment is critical to evaluating the effectiveness and value of existing and new AD treatments, both to support clinical trials and new alternative payment or care delivery approaches. For example, some states, such as Washington, are piloting Medicaid reforms that provide “respite” support for caregivers as well as other care coordination services that rely on caregivers as an integral part of a comprehensive approach for community-based care for Alzheimer’s patients. These initiatives have growing potential to transform Alzheimer’s care in the future.

The project will engage faculty, students across different learner levels, and external collaborators and stakeholders to explore strategies to improve integration of caregivers in clinical care decision making, with a particular emphasis on enhancing their role in data collection on AD treatment experiences and outcomes. We aim to identify possible approaches, their associated opportunities and challenges, and future directions for their development and adoption. Achieving this goal will help inform advances in clinical practices, outcome measurement, and payment and delivery reforms to transform AD care.   

Faculty/Staff Team Members

*Team Lead