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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.

Caring Collective Mentor Panel

Dear PMC Care Partners,

Do you remember the day you and your loved one learned about a dementia diagnosis? Whether the diagnosis the doctor delivered was mild cognitive impairment, Alzheimer’s disease, Lewy body dementia, or another cognitive impairment, it’s always described as a scary moment for both the patient and the care partner.

As executive director of the Penn Memory Center (PMC), I have a background in social work that helped me develop, deliver and grow the robust support system we have been providing to families in our care since 2008. From counseling and coaching to classes for caregivers, support groups, memory cafes, Time Together, and the many other ways we support families living with dementia, our goal is to bridge the gaps in dementia care and help families cope with changes, navigate the complexities of managing these progressive illnesses, and tend to their social and emotional wellbeing.

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PMC clinician Dr. Roy Hamilton earns Changemaker Award for his dedication to diversity efforts

By Cait Kearney 

Roy Hamilton holding award

Roy Hamilton

Penn Memory Center (PMC) neurologist Roy Hamilton, MD, MS, was awarded the American Academy of Neurology (AAN) Changemaker Award for his “tremendous dedication” to diversity, equity, and inclusion.  

“Winning the AAN Changemaker Award is one of the highlights of my career as a neurologist and as a diversity advocate,” said Dr. Hamilton. 

Dr. Hamilton co-directs PMC’s Summer Training in Aging Research (STAR) program — an academic opportunity for undergraduate and graduate students who are interested in aging research of underrepresented groups.  

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Positive donanemab study results may be ‘inflection point for the field’

Brain scans show clearance of amyloid plaques, shown in red, in two patients, A and B, who received donanemab, compared to higher levels of amyloid in a patient who received placebo (bottom) in Eli Lilly’s trial. (time.com)

By Caitlin Kearney

The investigational drug donanemab was found to slow cognitive decline in people living with early-stage Alzheimer’s disease, Eli Lilly announced this morning.

In the TRAILBLAZER-ALZ 2 study of 1,700 participants, including at the Penn Memory Center, donanemab slowed cognitive decline by 35 percent in people who received the drug compared to those taking a placebo.

“This is the first Phase 3 trial of any investigational medicine for Alzheimer’s disease to deliver 35 percent slowing of clinical and functional decline,” said Daniel Skovronsky, MD, PhD, Eli Lilly’s chief scientific and medical officer.

Donanemab carries the risk of brain bleeding and swelling, known as ARIA. About 2 percent of study participants experienced serious ARIA.

Drs. Jason Karlawish and David Wolk, PMC co-directors, said they look forward to a formal presentation of these results in published research and at a conference in late July but offered that this could be “a true inflection point for the field.”

They draw three clear lessons from this announcement, particularly following the success of Biogen’s lecanemab:

  • The general approach of targeting and effectively clearing amyloid alters clinical outcomes.
  • Disease stage matters, and earlier treatment is more effective.
  • A precision medicine approach to Alzheimer’s disease is vital.

Penn researchers are particularly interested in learning more about the strategies for dosing and stopping donanemab, which could make this a more practical and less expensive option for treatment in the future.

Once PMC researchers have had a chance to access and review more data, a community discussion will be held for patients and families.

Rachel Marx named PMC’s first Social Work Fellow

The Penn Memory Center (PMC) is thrilled to announce that former social work intern, Rachel Marx, has accepted a position as the PMC’s very first Social Work Fellow.

Marx will be training under PMC’s director of social work, Alison Lynn, MSW, LCSW, to gain advanced and specialized skills in providing brief treatment psychotherapy (6-8 weeks in duration) to people living with dementia and their family caregivers.

Headshot of Rachel Marx smiling

Rachel Marx

Marx’s services will be provided free of charge to PMC patients and their family members in order to ensure that anyone who needs supportive therapy can access it regardless of financial means or insurance coverage.

To read more about what psychotherapy looks like in the context of dementia, click here: Demystifying psychotherapy: How therapy can help you.

Marx will start working with patients both in-person and via telemedicine in early June. In the meantime, if you or a family member are interested in seeing her, please contact Alison Lynn at alison.lynn@pennmedicine.upenn.edu or 267-239-1968 to join the waiting list.

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La facultad de Penn promueve el ejercicio para para un envejecimiento cerebral saludable en la comunidad latina

Por Meghan McCarthy y traducido por Jessica Moreno, Valerie Ramos y Camila Loaiza

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Las comunidades latinas de adultos mayores son algunas de las más sedentarias del condado, pero una investigadora de la Universidad de Pensilvania ha demostrado que las clases de educación en bienestar y la actividad física en grupo pueden ayudar a mejorar los resultados de la salud.

Estos mejoramientos universales podrían conducir a una mejor salud cognitiva.

“Para mí, se trata de la memoria”, dijo Adriana Pérez, PhD, ANP-BC, FAAN, de la facultad de enfermería de Penn. “El cerebro es capaz de aprender cosas nuevas sin importar la edad”.

El CDC informa que el 32.1 % de los latinos mayores viven un estilo de vida inactivo fuera del trabajo: el más alto entre todos los grupos de raza/etnicidad.

Esto se debe en gran parte a los determinantes sociales y estructurales de la salud, como el acceso alimenticio, atención médica, vivienda y vecindarios e ingresos seguros. Estas necesidades cotidianas son esenciales para el envejecimiento saludable del cerebro.

Los latinos son más propensos que sus pares a enfrentar dificultades para caminar al aire libre debido a temperaturas extremas o problemas de seguridad. Al contrario de las poblaciones blancas, es más probable que las comunidades latinas tengan dificultades para pagar programas de actividad física o membresías en gimnasios. Las barreras del idioma también pueden obstaculizar las clases grupales de actividad.

Participantes de Tiempo Juntos con la promotora de salud comunitaria, Ruby Rivera y la Dra. Pérez

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Penn faculty promotes exercise for healthy brain aging in the Latino community

By Meghan McCarthy 

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Latino older adult communities are some of the most sedentary in the country, but one University of Pennsylvania researcher has shown that group fitness and wellness education classes can help improve universal health outcomes.

These universal improvements could lead to improved cognitive health. 

“To me, it speaks to memory,” said Adriana Perez, PhD, ANP-BC, FAAN, of Penn’s School of Nursing. “The brain is capable of learning new things no matter what age.” 

The CDC reports that 32.1% of older Latinos live an inactive lifestyle outside of work—the highest amongst all race/ethnicity groups. 

This is largely due to social and structural determinants of health such as access to healthy food, healthcare, safe housing and neighborhoods, and reliable income. These everyday necessities are essential for healthy brain aging.   

Latinos are more likely than their peers to face difficulty walking outdoors due to extreme temperatures or safety concerns. It is more likely for Latino communities to struggle to afford physical activity programs or gym memberships than white populations. Language barriers can make group fitness classes difficult.  

Participants of Tiempo Juntos, Ruby Rivera, and Dr. Pérez waving

Participants of Tiempo Juntos with community health promoter, Ruby Rivera and Dr. Perez

To confront this challenge, Dr. Perez studies effective, culturally relevant strategies to engage the Latino community in Tiempo Juntos Por Nuestra Salud, which is a clinical trial that translates to “Time Together for Our Health.” 

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