Confronting the Human Costs of Alzheimer's

Countless numbers of us have experienced the devastation of Alzheimer’s disease. As I did with my own mother, we have watched with increasing frustration as someone we love slips away day by day without comprehension, control, or comfort, and we have often felt powerless to help. Hope has been in short supply.

But it was with a tremendous feeling of hope that Dean Larry Jameson and I welcomed a group of some 50 Alzheimer’s disease luminaries to the University of Pennsylvania in June for the Marian S. Ware Alzheimer Program Invitational Summit, co-hosted by Penn Nursing, Penn’s Perelman School of Medicine, and The Campaign to End Alzheimer’s Disease by 2020. The conference, dedicated to the state of the science of Alzheimer’s disease, was sponsored by the Marian S. Ware 2006 CWG Charitable Lead Annuity Trust with support from Penn Nursing alumna and Overseer Carol Elizabeth Ware. In Penn’s historic Houston Hall, experts from academia, industry, and the care and philanthropic communities came together to map out a strategy to implement the “National Plan to Address Alzheimer’s Disease,” which was released this spring by the United States Department of Health and Human Services. Conference leaders will produce a paper with specific recommendations for the plan.

The take-home message from the meeting was one of urgency to envision and implement both long-term solutions in the form of new treatments and prevention measures as well as more supportive and holistic care options for patients and caregivers. With Dr. Jason Karlawish of Penn’s Perelman School of Medicine, Dr. Mary Naylor, the Marian S. Ware Professor of Gerontology and director of the NewCourtland Center for Transitions and Health at Penn Nursing, led the conference. Dr. Naylor’s work in transitional care holds great potential for patients with Alzheimer’s disease and their families. She and others who participated in a work-group on clinical care and health services research continually reminded their colleagues to keep in mind the human costs of the disease and the needs of patients and families from the time of initial recognition that something is wrong, through the inexorable decline in cognition and physical function, and finally to the end of life.

This conference represents a watershed moment in worldwide efforts to confront what eminent Alzheimer’s researcher Dr. John Trojanowski called the “silver tsunami” of aging in our global society. Working together, across disciplines, institutions, and geographical boundaries, we will indeed find solutions to the challenges we face throughout the full care-to-cure spectrum.