Eleanor Schildwachter McConnell

Primary Theme: Brain & Society

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.