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By Leah Fein and Danny Yarnall 

A recent study conducted by Penn Program on Precision Medicine for the Brain (P3MB) researcher Emily Largent, PhD, JD, RN, reveals new information on a hot-button debate in medical ethics.

The study, published in JAMA Neurology, looked at personal perceptions of access to aid-in-dying for Alzheimer’s disease and dementia patients. With new legislation in New Jersey and Maine, by October 2019 roughly 1 in 5 Americans will live in states where doctors can prescribe lethal medication to patients with capacity who have six months or less to live. 

P3MB researchers interviewed 50 older adults, most with family histories of Alzheimer’s and all with elevated levels of the Alzheimer’s disease biomarker amyloid. Amyloid confers “an increased but uncertain risk of developing Alzheimer’s disease,” Dr. Largent told The New York Times. The P3MB researchers found that about 1 in 5 of the individuals expressed interest in aid-in-dying if they became cognitively impaired or were a burden to their families, while another 15 percent described themselves as ambivalent. Two-thirds of the group would not choose aid-in-dying for themselves.  

By Leah Fein

One in 10, or about 5.8 million, Americans are living with Alzheimer’s disease. This number is predicted to rise to about 14 million by 2050. In Pennsylvania alone, the percentage of people living with Alzheimer’s is expected to increase by 14.3 percent in the next five years, according to the 2019 Alzheimer’s Association Facts and Figures.

By Danny Yarnall

The very definition of health is up for debate.

PMC scholar Cara Kiernan Fallon and PMC Co-Director Jason Karlawish recently authored editorials for for the American Public Health Journal  and STAT that support an update to the definition of human health made seven decades ago at the World Health Organization’s (WHO) inception. 

“We thought about the ways current public health initiatives for ‘healthy aging’ reflect a contradiction in terms, and then we turned to the definition of health,” said Fallon, who is also a Bioethics Fellow at UPenn.

The WHO currently describes health as a “state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.” The pair argues as medical science prolongs lifespan and improves quality of life while living with the disease, “healthy” has taken on a new meaning. They recommend the definition be expanded to include noncommunicable disease and special considerations for the elderly, as more than two-thirds of adults 65 or older live with more than two diseases. 

Credit: Penn Medicine News

By Leah Fein

The music we listen to early in life remains engrained in our brain and can even be recognized throughout the course of Alzheimer’s disease. Memory in Motion aimed to use this power of music to get people living with cognitive deficits and their caregivers up, moving, and having fun. Colby Damon, a former professional dancer with BalletX, led the group.

“Dance gets the heart rate up and the circulation flowing, but the only side effect is having fun,” Damon told Penn Medicine News. “It breaks the isolation, connecting them with music and thereby emotional associations they know and love.”

Jack Witzman (left) was always by his wife Jackie’s side as she participated in a clinical trial at the Penn Memory Center. Jackie has Alzheimer’s disease. (Photo by Terrence Casey)

By Sharnita Midgett

Jack Witzman remembers the first time his wife, Jackie, met the new executive director of Easterseals last summer while he toured the adult daycare. 

Upon meeting him, Jackie got up and started to dance. She was trying to teach him line dancing, and Jack knew that his wife enjoyed the atmosphere. A year later, Jackie became a 2019 Ambassador for Easterseals.  

By Sharnita Midgett

Despite its central role in defining the experiences of those diagnosed with Alzheimer’s disease, stigma in dementia has been understudied.

In a paper published in Current Psychiatry titled Stigma in Dementia: It’s Time to Talk about It co-authored by Penn Memory Center Scholar, Shana Stites, PsyD, MA, MS, the authors highlight the impact of stigma on those with dementia, how it has been studied and addressed in the past, and steps to mitigate stigma in the future. The paper follows a collaboration of the authors for a symposium on stigma that they presented at the 2018 Gerontological Society of America (GSA) Annual Scientific Meeting in Boston.

By Leah Fein

Although voting is a fundamental right in the United States, people with serious mental illnesses (SMIs) often encounter barriers when voting. To better understand these barriers, researchers at Wesleyan University and Yale University conducted a review of current psychological and legal literature.

There are various federal laws that protect voting rights for persons with disabilities, such as the Americans with Disabilities Act and the Help America Vote Act. However, the researchers found that certain state laws regarding voter competence, photo IDs, voter challenges and incarceration practices can unequally effect persons with SMIs. 

More specifically, only 10 states do not have any legal restrictions on voting for people with disabilities based on competence. All other states have a system in place to restrict voting rights of people with disabilities who are determined incapacitated. 

Illustration of amyloid plaques on a nerve cell

By Christine Willinger

Over the past 25 years, biomedical research has revolutionized the diagnosis of Alzheimer’s disease (AD). Once based solely on clinical signs and symptoms, today’s diagnosis involves advanced methods that can detect neurodegeneration far earlier than before, including imaging and biological fluids. 

By Leah Fein and Christine Willinger

Researchers at the Penn Memory Center and their collaborators will present their work at the Alzheimer’s Association International Conference (AAIC), held in Los Angeles from July 14-18.

AAIC is the world’s leading forum for the advancement of dementia science, and the PMC team will share a wide range of research.