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

Background

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

Timing

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)
Caregiver and patient

/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, School of Medicine-Population Health Sciences|Margolis Center for Health Policy*
  • Courtney Van Houtven, School of Medicine-Population Health Sciences*

/graduate Team Members

  • Lauren Bunch, Philosophy-PHD
  • Roy Thompson, Nursing-PHD

/undergraduate Team Members

  • Trevor Anderson
  • Mala Bansal, Public Policy Studies (AB)
  • Christopher Beck
  • Manish Kumar
  • Zara Porter, Public Policy Studies (AB)
  • Gary Wang, Program II (AB)

/zcommunity Team Members

  • Shah Shreya, Undergraduate Student, UNC-Chapel Hill