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.

Mapping the Future of Nursing

We recently marked a historic day for nursing. The meeting “Partnering to Transform Healthcare in Pennsylvania,” part of a national effort, brought together more than 200 nurses and nursing students here at Penn earlier this month to discuss an action plan for the future of healthcare in the state. It is clear that nurses in Pennsylvania have great potential – and responsibility -- to make much-needed changes to the healthcare system.

To this end, the Pennsylvania State Nurses Association, a co-leader of the Pennsylvania Action Coalition, joined a 50-state campaign to advance the recommendations of the Institute of Medicine’s 2010 Future of Nursing report. Leading the campaign are the Robert Wood Johnson Foundation (RWJF), the Center to Champion Nursing in America, and the AARP Foundation.

Chaired by Julie Fairman, PhD, RN, FAAN, the Nightingale Professor at Penn Nursing, the steering committee of the Pennsylvania Action Coalition is developing a mission statement and strategic plan -- or “map” – to meet the IOM’s recommendations in Pennsylvania.

Time is of the essence. Pennsylvania ranks fourth in the nation among states with a population aged 65 and older, after Florida, West Virginia, and Maine, according to the 2010 Census, with similarly high rates of diabetes, hypertension, and asthma. The demand for healthcare providers of course is growing in tandem.
To meet the increasing healthcare needs of the U.S. population, the IOM report recommended:

• Increasing the proportion of nurses with a baccalaureate degree to 80 percent by 2020
• Doubling the number of nurses with a doctoral degree by 2020
• Developing nurse leaders to advance health
• Building an infrastructure for the collection and analysis of interprofessional healthcare workforce data to ensure equitable distribution of resources.
Advancing the education of nurses is particularly important. The national average for nurses with a bachelor’s degree is about 50 percent, and in Pennsylvania it is about 41 percent. Susan Hassmiller, senior adviser for nursing with RWJF, spoke not about a so-called “nursing shortage,” but about a faculty shortage. Estimates show that some 3,000 eligible nursing students are turned away every year by education programs in Pennsylvania for insufficient numbers of faculty to teach them.
As she pointed out, having more highly educated healthcare professionals will lead to safer and more effective care, and having more nurse practitioners and midwives in practice would help create a more cost-effective system.

The Pennsylvania Action Coalition will next establish regional coalitions co-led by a nurse and a non-nurse partner.  This is where the real work will take place. When you are called to participate, I urge you to join.

You have a role in ensuring more equitable care, state-by-state, in a country in increasing need of it.