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Cait’s Brain Bites Blog: Alzheimer’s Association International Conference (AAIC) Amsterdam

Me! Cait Kearney

Food for Thought… And to Eat!

Hi, I’m Cait!

I’m a communications specialist at the Penn Memory Center (PMC), and I’m attending this year’s Alzheimer’s Association International Conference (AAIC) in Amsterdam to cover breaking news on Alzheimer’s therapies and Penn research highlights.

I’m also a huge foodie, so over the course of the conference I will be keeping this blog page to make a post each day of the conference reflecting on AAIC and (at least!) one interesting thing I ate.

AAIC is happening July 16-20. I will be attending over a dozen research presentations and have a list of foods to try, including bitterballen, stroopwafel, and snert! Stay tuned for my daily posts.

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Lecanemab fully approved by FDA

Dear Penn Memory Center friends and family,

Today, the Food and Drug Administration (FDA) fully approved the Alzheimer’s disease drug lecanemab (sold by Eisai as “Leqembi”).

PMC is working diligently with Penn Medicine to develop a process for patients and families to learn if Leqembi is a good fit for them and, if it is, how they can safely and effectively receive the medication. We will continue to update the PMC community on our progress.

Later this month, we are also excited to learn more about the results of the Phase 3 study of donanemab. Donanemab is an intravenous anti-amyloid therapy, like lecanemab, for people with early-stage Alzheimer’s disease. Please save the date to attend the virtual PMC Community Discussion on Donanemab on August 14 at 4 p.m. Registration for the Community Discussion will be sent out shortly, and the event will be recorded.

Fortuitously timed with Independence Day, the news of lecanemab‘s full approval signals a revolution in Alzheimer’s disease. The clinicians and staff at PMC will continue to help lead this change and to strive to provide the highest standard of reasonable and necessary care for our patients and their loved ones.
Sincerely,

Jason Karlawish and David Wolk
Penn Memory Center Co-Directors

Genome Sequencing Project strives to detect early markers of ADRD in diverse populations

Woman and man smiling at each other

By Meghan McCarthy 

The U.S. Census Bureau reports that 59.3% of the United States population are white individuals. Yet, a recent analysis of preclinical trials related to Alzheimer’s’ disease and related dementias (ADRDs) found that 85.9% of the 59,455 research participants involved where white.

ADRDs disproportionally impact ethnic minorities, and researchers around the country are working to understand why.  

Historically, African Americans, Hispanic, and Asian Americans are substantially underrepresented in AD research populations. The Alzheimer’s Disease Sequencing Project (ADSP), which uses multi-ancestry study groups, aims to bridge this gap.  

“We know the problem and have to do the work,” said Li-San Wang, PhD, a leader of the Penn Alzheimer’s Disease Research Center and co-director of the Penn Neurodegeneration Genomics Center.

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PMC hosts celebration to honor patients and families

On June 14, the Penn Memory Center (PMC) held “A Celebration of Hope” to raise dollars for expanded dementia research and care and to honor PMC patients, families, and clinicians.

The celebratory event, held at the Pennsylvania Horticultural Society (PHS) Pop Up Garden, featured a cabaret performance by Eddie Bruce and the Tom Adams Trio with special guest Michael Pedicin and a live auction that included an exclusive golf outing, private dinners, a limousine experience, and more.

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Three powerful posts about dementia recommended by Alison Lynn

By Alison Lynn, Penn Memory Center Director of Social Work

Diane’s daughter holding a picture of her and her mother. Credit: McNair Evans for The New York Times

A Story of Dementia: The Mother Who Changed

Katie Engelhart (whose book, “The Inevitable: Dispatches on the Right to Die,” I also highly recommend) explores the complexities of selfhood, decision-making capacity, and caregiving in her heartbreaking story on the Norelius family.

Engelhart traces the story of Diane Norelius, whose diagnosis of dementia led to a years-long financial and legal conflict between her daughters and her new romantic partner. Diane’s personality changed, which led her to start a relationship with a man who her daughters allege was financially manipulating her and neglecting her care. Her partner, of course, accused her daughters of the same thing.

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Decrease your stress, increase your brain health 

Woman smiling and confidently breathing at park

By Meghan McCarthy and Cait Kearney

In a study by the American Psychological Association, 76% of participants reported they experienced negative health impacts due to stress in the prior month, and 34% said their stress was “completely overwhelming” most days.   

Stress can harm memory, mood, and cognition, and cause a variety of other health problems. Greater mental well-being, on the other hand, is connected to better cognitive health and reduced dementia risk. 

Luckily, there are a number of ways you can manage your stress and boost your brain health and well-being.

AARP’s Global Council on Brain Health (GCBH) has identified six key points regarding stress management to help you promote mental wellness in your life:

  • You can conquer your stress
  • A stable daily schedule promotes calm
  • Physical activity can ease stress
  • Social ties boost positive feelings
  • Stay tuned into your stress level
  • Laughter keeps balance in your life

Check out this Mental Wellness Quick Sheet for more practical tips to increasing well-being and reducing stress.

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How should patients learn Alzheimer’s test results? 

Doctor talking to patient

By Meghan McCarthy

The importance of biomarkers in the diagnosis and clinical evaluation of Alzheimer’s and related dementias (ADRDs) is growing. Yet, there is no standardized method for disclosing biomarker test results to patients.  

In the past, clinicians may have hesitated to disclose a diagnosis of dementia to protect the patient from emotional burden or “existential dread.” However, studies indicate that many patients want to be fully informed. 

University of Pennsylvania researchers outlined the essentials for clinicians disclosing biomarker results for patients with ADRDs in a recent paper in Neurology. 

“Biomarkers have transformed our understanding of Alzheimer’s disease and are increasingly influencing how we conduct research and deliver care.  As a result, it’s important to think about how to communicate biomarker information to research participants and to patients, as well as to study partners and families,” said Emily Largent, PhD, JD, RN, first author of the paper.  

Dr. Largent and colleagues say that clinicians should:  

  1. Determine the appropriateness of AD biomarker testing and return of results for the particular patient or research participant. If testing is appropriate, next steps are: 
  2. Provide pre-test education and seek consent for testing to the individual and their support person 
  3. Administer testing 
  4. Return the results to the individual and their care partner 
  5. Follow-up to promote the recipient’s wellbeing and to learn from their experience 

“This article is our attempt to offer a framework to researchers and clinicians for delivering biomarker information with scientific and ethical sensitivity,” said Dr. Largent.

Graphic listing the 5 essentials of biomarker disclosure

Additionally, Dr. Largent and colleagues from the Penn Program on Precision Medicine on the Brain (P3MB) are currently developing disclosure guidelines for clinicians for the Alzheimer’s Disease Neuroimaging Initiative 4 (ADNI4). ADNI4 is a federally funded study with more than 1,100 participants and 59 study sites.  

Find Dr. Largent’s full article here.

PMC luncheon celebrates dedicated research participants and study partners

By Cait Kearney

Function hall filled with people at tables

PMC Luncheon at the Sheraton University City Hotel

After a three-year hiatus, the Penn Memory Center (PMC) Research Participant Thank You Luncheon was held in May to recognize the dedication and efforts of PMC research participants and their study partners.  

“Without you all, we wouldn’t be here today,” PMC Co-Director Jason Karlawish, MD, told the audience in his opening remarks. “All of you should feel like this is a celebration of the work you did because being in research is work.” 

Over 200 people attended the event, held at the Sheraton Hotel in University City.  

“We left feeling hopeful, knowledgeable, and well taken care of in this difficult journey,” said Susan Henderson, research study partner. 

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UPenn Alzheimer’s researcher awarded honorary degree

Dr. Les Shaw smiling while receiving his doctor of humane letters from his alma mater.

Les Shaw, PhD, receiving a doctor of humane letters from Le Moyne College

University of Pennsylvania researcher Les Shaw, PhD, received a doctor of humane letters, an honorary degree, from his alma mater Le Moyne College in Syracuse, NY, this past weekend.

In his acceptance speech, Dr. Shaw spoke about the Alzheimer’s Disease Neuroimaging Initiative (ADNI) and the importance of diversity in research.

“I’m very happy to say, in the spirit of the Ignatian principle of service to others, that a hallmark part of that study now is to address underserved minorities,” Dr. Shaw said.

Dr. Shaw is a professor of pathology and laboratory medicine. He has been a pioneer in therapeutic drug monitoring, establishing the toxicology and therapeutic drug monitoring laboratory at the University of Pennsylvania (serving as director since 1977), and participated in several international consensus panels devoted to defining best practices.

A Mind in Splints: What it is like to be a person living with dementia

Penn Memory Center (PMC) Co-Director Jason Karlawish, MD, delivered the 2023 Renée C. Fox Lecture in Medicine, Culture, & Society.

In his talk, Dr. Karlawish explored the difference between the physical brain, able to be seen and measured, and the extension of self known as the mind in persons living with dementia.

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