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A collaborative effort is seeking nominations for people with dementia and their caregivers to participate in a panel that will engage with researchers in an attempt to improve the design of research and clinical trials. These research interventions could then, in turn, improve the lives of the patients and their loved ones.

The National Institute on Aging (NIA) IMbedded Pragmatic Alzheimer’s disease and AD Related Dementias Clinical Trials (IMPACT) Collaboratory and the Alzheimer’s Association are jointly organizing the “Lived Experience Panel” to provide feedback to researchers and discuss methods for studying non-medication interventions that can improve the quality of life of patients and their loved ones.

The Penn Memory Center (PMC) has been actively involved with IMPACT to support efforts to conduct pragmatic clinical trials of interventions with healthcare systems for those living with dementia and their caregivers. Drs. Jason Karlawish, co-director of PMC, and Emily Largent, a Christopher M. Clark scholar at PMC, lead the ethics and regulation core of the Collaboratory. Kristin Harkins, a PMC research program manager, serves as the project manager for the core.

By Varshini Chellapilla  

Clinicians and philosophers struggle to answer an ethically charged question: Are advance directives for people living with dementia useful? A recent essay suggests an entirely new way approach to answering this question. The authors include Penn Memory Center Co-Director Jason Karlawish, MD, and his colleague David Lyreskog, PhD. 

Advance directives are documents prepared to guide care for someone who is unable to make their own health care decisions. They contain information about the person’s preferences for care. They’re also called “a living will.” They have an obvious appeal to guide the care of persons living with dementia, a condition that stereotypically impairs decision-making abilities.  

Drs. Karlawish and Lyreskog, along with Saskia Nagel, PhD, of RWTH Aachen University, argue for an entirely new way of thinking about autonomy in persons living with dementia. Their argument was published in the August 6 issue of The American Journal of Bioethics under the title, “Where Do You End, and I Begin? How Relationships Confound Advance Directives in the Care of Persons Living with Dementia.”

By Varshini Chellapilla

If a person living with cognitive difficulties expresses a desire to vote, he or she ought to be assisted as needed to legally and effectively cast that vote.

This was a key message Thursday as the Penn Memory Center and Enon Tabernacle Baptist Church discussed the 2020 election.

“Truly when we vote, we lift up our voices in one great chorus,” said Jason Karlawish, co-director of the Penn Memory Center. “One vote at a time, we all become many. For most of us, this is a very private and personal act that we do. But some of us need help to vote. Some of us need someone else to help make our voice heard.” 

By Varshini Chellapilla 

Researchers at the Penn Memory Center have discovered a new and rare form of dementia, which they have called vacuolar tauopathy.  

They have observed and determined that the progression of symptoms differs from that of dementia caused by Alzheimer’s disease. Where Alzheimer’s disease is focused on memory issues early in the disease, this type of dementia affects behavioral, language and executive problems instead.  

By Kamila Ahmad 

The way researchers measure the possibility of an older adult developing Alzheimer’s disease is changing.  

Researchers from the University of Pennsylvania Perelman School of Medicine — Edward Lee, assistant professor of pathology and laboratory medicine, and Mingyao Li, professor of biostatistics — collaborated to analyze alternative methods of examining brain cells to existing ones.  

Old methods involved grinding up the brain to study the disease, which made it impossible to study the complex cell characteristics unique to each different type of brain cell. “The new technology is that there are ways to look at individual cells, one at a time, to understand what genes are being expressed in those cells,” said Dr. Lee.  

Inspired by a family history of Alzheimer’s disease, Lea Brovedani joined the ABC study in 2019. A mother of 2, Brovedani dedicated her time to the study with the future of her family and others in mind.

And not even the COVID-19 pandemic would keep her from living up to that dedication.

“I don’t think that research should stop because of this,” said Brovedani, who had a PET scan in July. “So many things have completely halted because of the pandemic, and I am certainly supportive of taking as many precautions as possible. But I still believe that in order for us to find answers for anything — including the pandemic, including Alzheimer’s, including different forms of cancer — that research needs to continue. I trust that Penn has my best interest at heart as well and will do everything to keep me safe.”

Aging can present many opportunities and challenges. Join Lisa Walke, MD, MSHA, AGSF, Chief of Geriatric Medicine at Penn Medicine, to learn more about some of the most common chronic health conditions we face as we age, such as arthritis, diabetes, hypertension, obesity, and more. Dr. Walke will share tips for managing your health as you age and tools for living well with chronic illness.

Lisa M. Walke, MD, MSHA, AGSF is the Chief of the Division of Geriatric Medicine for the Perelman School of Medicine of the University of Pennsylvania. Under her leadership, the division is developing clinical, research and educational programs that will foster Penn’s development into an Age-Friendly Health System. Dr. Walke’s scholarship focuses on improving health outcomes for older adults through the implementation and evaluation of innovative care delivery models. She was named a fellow of the American Geriatrics Society (AGS) in 2014, received the AGS Outstanding Mid-Career Clinician Educator of the Year award in 2017 and was named a Top Doctor in Geriatric Medicine by Philadelphia Magazine in 2020.

Questions? Contact Shakia Bundy, sbundy@ralstoncenter.org

Click here to register.

Join the Penn Memory Center and the Time Out team in a new, 8-week virtual exercise program: Shake It Up.

Led by Alice, Janelle, and Meryl, students in the Temple University Exercise and Sport Science program, Shake It Up will meet on Zoom at 1:30 p.m. on Wednesdays beginning September 30. The program will focus on coordination, muscle activation and meditation. This program is open to all members of the Penn Memory Center community, including all levels of mobility and care partners.

The class is free, but RSVP is required.

Questions? Contact timeout@temple.edu or leave a voicemail at 215-204-3364.

By Terrence Casey

Jordan Weiss, PhD

Dementia may play a larger role in US mortality than standard statistics show, according to research published in JAMA Neurology.

Former Penn Memory Center trainee Jordan Weiss, PhD, and co-authors studied more than 7,000 adults in a nationally representative cohort and combined the data with cause-of-death records on death certificates. They found that “the estimated percentage of deaths attributable to dementia was 2.7 times that calculated from vital statistics data on the underlying cause of death.” The authors explain that underreporting could be because of comorbidities and/or missing diagnoses.

The results further support the need to expand population-based interventions focused on dementia prevention and care, authors said. 

“Our findings suggest that the mortality burden associated with dementia may be greater than recognized. Moreover, racial and ethnic disparities in dementia mortality may be underestimated,” Dr. Weiss said. “Together, these results highlight the importance of expanding dementia prevention, care, and awareness in a culturally sensitive way to address the disproportionate burden of dementia faced by underrepresented minorities.”

By Sharnita Midgett, MPH

Studies to discover new treatments for Alzheimer’s disease have been revolutionized.

A person who has no cognitive problems — who’s busy working or traveling or caring for grandchildren — can undergo a PET scan to determine whether she has “elevated amyloid,” a high level of a protein associated with a heightened lifetime risk of developing dementia caused by Alzheimer’s disease.

If it were you, how would you react?

Researchers participating in the Anti-Amyloid Treatment in Asymptomatic Alzheimer’s Disease (A4) Study are learning the answers to this important question. In the August 2020 issue of JAMA Neurology, “Short-term Psychological Outcomes of Disclosing Amyloid Imaging Results to Research Participants Who Do Not Have Cognitive Impairment” reports people who learned they had elevated amyloid did not experience an increase in negative psychological outcomes particularly depression and anxiety.