Transforming Alzheimer's Disease Care through Integrating Caregivers (2018-2019)


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. It is the sixth leading cause of death in the United States and the only one of the top ten diseases without treatment to prevent, cure or slow its progression.

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. For example, caregivers are not currently included in the medical records of patients or involved in monitoring outcomes. 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 Alzheimer’s diseasepatients. Incorporating input from caregivers could help build a more complete picture of the patient and potentially improve care.

Project Description

This Bass Connections project will explore 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. The project team will identify possible approaches and associated opportunities and challenges, along with 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 Alzheimer’s disease care.  

As a first step, the team will conduct a literature review on caregiver involvement and integration in Alzheimer’s disease care, focused on identifying gaps, needs and potential strategies. Next, the team will pursue interviews with caregivers, patients, clinicians, patient advocacy and community groups and other thought leaders, to discuss key issues identified in the literature review.

Following completion of 20-25 stakeholder interviews, the team will convene a public meeting at the Duke-Margolis Center for Health Policy in Washington, DC, to discuss the opportunities and challenges associated with the caregiver integration strategies identified through the interviews. 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.

Anticipated Outcomes

Background paper, public meeting, perspective article for publication in a peer-reviewed journal, support for future grant proposals

Student Opportunities

Students will work as a group to develop a questionnaire, conduct interviews, synthesize primary and secondary data, draft papers and organize and participate in a public stakeholder meeting. They will collaborate on all aspects of the project.

The team will meet in person twice per month for at least an hour to discuss key concepts related to the project, project tasks and progress and any concerns or hurdles. On occasion, the team will hold conference calls with contributors in Washington, particularly around planning the public meeting. One or more of the team leaders and the graduate student project manager will be available to address student participants’ questions or needs in between meetings.

The team will ideally include three undergraduates, two graduate/professional students, one medical student and one resident. Commitment is required for both fall and spring terms in 2018-19. Students from any major/discipline who are interested in healthcare and policy are encouraged to apply. Those keen to develop qualitative research and policy development/analysis skills will be particularly well suited. While a background or knowledge of healthcare or medicine and health economics or policy might be helpful, they are not required. However, the master’s/professional student selected as project manager should have some experience in healthcare and with conducting literature reviews and interviews.

Students will receive course credit for their involvement and contribution to the project as well as a grade, which will be principally based on teamwork, peer mentoring, level of engagement and completion of high-quality research and deliverables, such as the background paper and publication.


Fall 2018 – Summer 2019  

  • Fall 2018: Initiate project, conduct literature review, design questionnaire, identify and recruit interview participants, conduct interviews, summarize and discuss interview findings, develop agenda and participant list for public meeting
  • Spring 2019: Draft background paper, disseminate meeting invitations, convene meeting, draft manuscript, plan for any other dissemination opportunities (e.g., blogs, conferences)
  • Summer 2019: Revise and submit paper (optional for student team members, depending on interest and availability; otherwise, team leaders and the project manager will complete)


Independent study credit available for fall and spring semesters; summer funding

Faculty/Staff Team Members

Eleanor McConnell, School of Nursing
Brenda Plassman, School of Medicine-Psychiatry: Behavioral Medicine
Gillian Sanders Schmidler, School of Medicine-Population Health Sciences|Margolis Center for Health Policy*
Corinna Sorenson, Margolis Center for Health Policy|School of Medicine-Population Health Sciences*
Courtney Van Houtven, School of Medicine-Population Health Sciences*

* denotes team leader


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