By Janissa Delzo

At the Penn Memory Center and Alzheimer’s disease research centers across the nation, research participants are essential to those studying neurodegenerative diseases and lifelong brain health. Without them, there could be no research.

Equally essential, though less obvious, is the study partner.

A study partner is someone who accompanies a participant to Alzheimer’s disease research visits and knows the participant well. Though this is frequently a spouse or adult child, it could easily be a friend, neighbor, or sibling-in-law who sees the participant often enough to accurately report on how the participant’s cognition and function is in their home environment.

Enrolling dyads — a participant and study partner — is often extraordinarily challenging, for a variety of reasons. But in order to advance Alzheimer’s research and get closer to the goal of treating and preventing the disease by 2025, as set forth by global leaders in the National Plan, it’s imperative to understand the challenges and barriers of study partner participation.

By Linnea Langkammer

Researchers often offer payment to research participants to reimburse them for expenses, to compensate them for their time and travel, or to incentivize their participation. New research suggests that offers of payment could actually drive participants to lie to researchers in order to meet enrollment criteria.

In the survey experiment, co-authored by Penn Memory Center Scholar Emily Largent, participants were offered a reimbursement for completion of an online survey. Over several experimental groups, researchers found that between 10.5% to 22.8% of participants falsely reported meeting the flu vaccine eligibility requirement when compared to a control group, which was paid regardless of flu vaccine status.  

By Sharnita Midgett

The number of adults 65 and older is expected to double by the year 2050, and though lifespan is increasing, healthspan — the length of time that one is in good health — is not.

Research continues to highlight exercise as important for improving markers of health, with a recent study describing why aerobic exercise may be especially important for family caregivers.

Jordan Weiss, a PhD candidate in Demography and Healthy Brain Scholar at the University of Pennsylvania, co-authored a study which examined the effects of aerobic exercise on cellular markers of aging in inactive family caregivers of loved ones with dementia.

By Sharnita Midgett

To understand the link between blood pressure and dementia, SPRINT MIND investigators are continuing their research to answer the question: does intensely controlling blood pressure in patients with hypertension decrease dementia risk?

A study co-authored by Assistant Professor of Radiology and SPRINT MIND Investigator Ilya Nasrallah, MD examined the effects of intensive blood pressure control versus standard blood pressure control on dementia. Nasrallah works closely with Penn Memory Center clinicians and assists with reviewing patients.

Hypertension, or high blood pressure, is a risk factor for many conditions, and the study of blood pressure is the main focus of the Systolic Blood Pressure Intervention Trial (SPRINT). SPRINT was designed to test the effect of more intensive blood pressure control on cardiovascular, renal, and cognitive outcomes in those without diabetes or preexisting stroke.

The trial found that intensive treatment for patients with high blood pressure resulted in fewer heart attacks, strokes, and cardiac deaths. The results were so clear that it would have been unethical to continue research that would delay intensive treatment for the group receiving standard treatment. The trial ended early, and the results led to the American College of Cardiology and the American Heart Association changing their definition of what constitutes high blood pressure. However, the question of blood pressure’s impact on dementia risk remains, and is a question that the substudy of SPRINT, SPRINT MIND (Memory and Cognition IN Decreased Hypertension), aims to answer.

By Sharnita Midgett

Greater mental well-being that includes optimism and a positive attitude is associated with reduced risk of dementia, according to a report from the Global Council on Brain Health (GCBH).

The GCBH met in London last fall to discuss the impact of mental well-being on older adults. From the evidence, they determined that optimism and greater mental health led to better brain health. Poor mental well-being, such as pessimism or not feeling useful, could interfere with people’s abilities to interact with others, regulate their emotions, think and reason. While mental well-being can be affected by a variety of factors such as genetics, relationships, personality and environmental factors, research shows that there are steps people can take to improve mental well-being as they age.

The Penn Memory Center continued its new Empowering Caregivers speaker series this year with occupational therapist and Day by Day Home Therapy founder Rachel Wiley, who presented “Bathing, Grooming, Dressing, and Other Activities of Daily Living.” Wiley’s workshop was both practical and personal, emphasizing real-world advice on caring for your loved one. Empowering Caregivers gives caregivers access to area experts who present on a variety of intensive topics, from in-home activities to end-of-life care.

All sessions are full. We appreciate your enthusiasm.

Biotechnology company Biogen today announced the decision to discontinue Phase 3 trials ENGAGE and EMERGE, which were designed to evaluate the efficacy and safety of aducanumab in patients with mild cognitive impairment due to Alzheimer’s disease and mild Alzheimer’s disease dementia.

At the Penn Memory Center, seventeen people were participating in the Biogen study. These participants and their study partners have been contacted regarding next steps.

Join the Penn Memory Center on Sunday, March 31, to shop Lilly Pulitzer’s new spring collection.

“Sweets and sips” will be served alongside information about the Penn Memory Center and our research and social work programs. Ten percent of proceeds will be donated to the Penn Memory Center.

Lilly Pulitzer is located in Suburban Square, 25 Coulter Avenue, in Ardmore.

By Linnea Langkammer

Moment to Moment isn’t a story about Carl’s Alzheimer’s disease, but it does tell that story.

It isn’t an origin story about the unique works of art Susan helped create, but it tells that story too.

“This film,” says filmmaker Mike Attie, “it’s a love story.”

By Sharnita Midgett

The “Promise Garden” has flower beds at a high perimeter, a circular path and no jarring shapes or colors. Its creators say it’s an ideal environment for those with memory loss.

The display at this year’s Philadelphia Flower Show was designed for those with dementia as an area where one could not wander off, get lost, or experience stress.

Promise Garden was designed by Tom Morris, Operations Manager at J Downend Landscaping, in memory of his late father-in-law, who lived with Alzheimer’s disease.

Mohamad Habes, PhD, (left) and David Wolk, MD

By Janissa Delzo

For the past year, Mohamad Habes, PhD has worked with Penn Memory Center (PMC) researchers to use emerging image analysis techniques to capture subtle brain changes for early recognition of aging and neurodegenerative disease effects.  

“Mohamad is an extremely bright and innovative young researcher who is making increasingly important contributions to our understanding of vascular disease and its relationship to the aging brain and Alzheimer’s Disease,” said Dr. David Wolk, PMC co-director and Habes’ mentor. “While his training and expertise are focused on statistical and computational approaches to image analysis, he consistently applies these tools to answer compelling questions that have true clinical implications.”

The Penn Memory Center kicked off its new Empowering Caregivers speaker series this month with occupational therapist and Day by Day Home Therapy founder Rachel Wiley, who presented “Meaningful Activities to Engage Your Loved One.” Wiley’s workshop was both practical and personal, emphasizing real-world advice on how to keep your loved one with dementia engaged and active, even as cognition declines.

Empowering Caregivers gives caregivers access to area experts who present on a variety of intensive topics, from in-home activities to end-of-life care. Each talk is free and capped at 30 guests. Priority will be given to those caring for patients of the Penn Memory Center. RSVP is required.

To RSVP, contact Felicia Greenfield, MSW, LCSW, at felicia.greenfield@uphs.upenn.edu or 215-662-4523 and note which workshop(s) you’d like to attend.

Memory in Motion is a dance class tailored to meet the challenges of people living with dementia and their caregivers. The class incorporates simple, adaptive movements set to musical favorites from the ’40s to present day in an open and accepting environment. It provides an opportunity for people living with dementia to better connect with bodily experience, and a chance for caregivers to participate in a fun, nostalgic, and active way. No prior dance experience is necessary!

Time:  11 a.m. to 11:45 a.m.
Dates:  Every Monday between March 11 and April 22
Place: BalletX, 1923 Washington Ave. Philadelphia, PA 19146
RSVP: Contact Felicia Greenfield at 215-662-4523 or at felicia.greenfield@uphs.upenn.edu

Instructor:
R. Colby Damon, BA
Professor of Dance, University of the Arts
Lead Teaching Artist, BalletX
Freelance Choreographer

Many caregivers experience depression, injury, and self-neglect as they face challenges supporting their loved ones with dementia.

By Linnea Langkammer

A dementia advocacy group co-signed a recommendation for a set of 2030 federal health objectives, encouraging the establishment of dementia-friendly communities and improving the psychological health of caregivers.

These two objectives were overlooked by the federal committee that advises the Secretary of the U.S. Department of Health and Human Services on national health and disease prevention, according to the Leaders Engaged on Alzheimer’s Disease (LEAD) Coalition.

REVEAL-SCAN study participant Isabel Gurbarg stands in the atrium of the Perelman Center for Advanced Medicine. If you are 65 to 80 years old, have a parent or sibling with Alzheimer’s disease and are interested in participating in REVEAL-SCAN at the Penn Memory Center, contact study coordinator Melissa Esparza at 215-662-6093 or melissa.esparza@uphs.upenn.edu.

by Joyce Lee

Isabel Gurbarg wanted to be sure.

More than a decade ago at the Penn Memory Center, then-Director Dr. Steve Arnold had diagnosed her mother with probable Alzheimer’s disease. But the only way to confirm the diagnosis would be through an autopsy procedure, Dr. Arnold told them.

And Gurbarg wanted to be sure.

“Her brain was all filled with amyloid,” Gurbarg recalled. Diagnosis: confirmed.

By Linnea Langkammer and Janissa Delzo

Two Philadelphia universities are partnering to offer affordable, in-home respite care to area families caring for older adults.

The Penn Memory Center (PMC) and the Temple University Intergenerational Center jointly revitalized Time Out, a support and mentorship program first launched in 1986.

Time Out will facilitate meaningful, in-home engagement through intergenerational companionship by connecting elderly individuals with PMC-trained college students. This includes conversation, reading, or mobility assistance, and may also include meal preparation, laundry, and light grocery shopping. It does not include personal care — such as bathing, dressing, feeding, or toileting — nor administering medications or therapies.

While private respite care may cost more than $20 an hour, Time Out care providers will be available for $8.50 an hour and up to 10 hours per week.

Diagram showing how you have a lumbar puncture. (Credit: Cancer Research UK)

By Sharnita Midgett

The goal of detecting Alzheimer’s disease earlier and more accurately in patients with cognitive symptoms has led to the development of new diagnostic tools. One tool is the use of spinal taps, which provide physicians with samples of cerebrospinal fluid (CSF) that are analyzed for levels of proteins associated with Alzheimer’s disease.

In a recent U.S. News & World Report article, PMC Co-Director Jason Karlawish, MD, discussed how Alzheimer’s disease is being redefined as a biological disease, with three biomarkers: amyloid plaques, tau tangles and deterioration of the nervous system.

“It holds promise for a more accurate diagnosis for the subset of people who have those biomarkers,” he told U.S. News & World Report. “It holds great promise for the development of treatments that can target those biomarkers.”

Florence Collins-Hardy (left) with her husband, Robert. Collins-Hardy has been an ABC study participant since 2014. (Linnea Langkammer / Penn Memory Center)

by Linnea Langkammer and Joyce Lee

Sandra Shulan is sitting next to her partner, Harry, in the Penn Memory Center (PMC) waiting room at the Perelman Center for Advanced Medicine. She isn’t nervous. In fact, she’s quite looking forward to it.

Her first ABC study visit.

by Sharnita Midgett

Classical music has filled the homes of Penn Memory Center patients since 2016, thanks to a unique partnership with a world-class conservatory.

Violist Rimbo Wong, then a student at the Curtis Institute of Music, worked with PMC to bring free classical performances to West Philadelphia. With her involvement in “Project HOME,” she hoped to shatter the stereotype that classical music is for exclusive audiences.

The Penn Memory Center and the Curtis Institute of Music have collaborated since 2015, sharing successful programs such as Memory Café, caregiver retreats, the annual Thank You Breakfast and Luncheons, Creative Expression Through Music, and Project HOME.

“The partnership between Curtis and the Penn Memory Center is a cherished one and yet another creative means for people to help understand, cope with, and make meaning out of their experiences,” said PMC Executive Director Felicia Greenfield, MSW, LCSW.

Credit: St. Croix Sensory, Inc.

By Erin Alessandroni and Janissa Delzo

“I’m going to hand you one of these sticks,” Allison Weiss, a research coordinator at the Penn Memory Center (PMC), told a patient. “What does it smell like: lemon, blueberry, mango, or orange*?”

“It’s hard to tell,” the 82-year-old man with mild cognitive impairment replied.

After wafting the stick back and forth under his nose for about 10 seconds, he answered with uncertainty: “smells like a little orange.”

He went on to sniff 15 more sticks, “getting almost none of the smells right,” Weiss said.

To those with an unimpaired sense of smell, distinguishing among the aforementioned artificial odors is likely an easy task. But for individuals with Alzheimer’s and other neurodegenerative diseases, impaired olfactory function is common.

Dr. Shana Stites, far right, at the “Stigma in Dementia: It’s Time to Talk About It” Symposium at the national Gerontological Society of America (GSA) meeting last week.

By Joyce Lee

The more people know about how to care for a person with Alzheimer’s disease (AD) dementia, the less likely they are to expect others to react negatively to that person.

That is one finding from the latest study by Penn Memory Center (PMC) Scholar Shana Stites, PsyD, MA, MS, who suggests that teaching caregiving skills could reduce public stigma of AD dementia and help caregivers.

November Memory Café
Featuring: Dance Class led by R. Colby Damon
Friday, November 30
10:30 a.m. to Noon
Christ Church Neighborhood House
20 N. American Street, Philadelphia

December Memory Café
Featuring: Curtis Institute of Music
Friday, December 7
10:30 a.m. to Noon
Christ Church Neighborhood House
20 N. American Street, Philadelphia

RSVP: alison.lynn@uphs.upenn.edu

Join us for our free monthly Memory Cafés this November and December.

November Memory Café will feature Robert Colby Damon, a professional dancer, choreographer, and dance teacher who has worked with such companies as BalletX, The Metropolitan Opera, and Pennsylvania Ballet. He will be synthesizing his broad experiences as a dancer and dance teacher working with various populations to lead a short dance class tailored specifically to the unique challenges of those living with Alzheimer’s disease. The class will be centered on easy, adaptive, and fun movements for patients and caregivers alike. All ages and skill levels are welcome, no former dance experience is necessary.

At December Memory Café, Curtis Institute of Music students will perform classical music and create a relaxing environment for attendees. The Curtis Institute is a conservatory in Center City, Philadelphia, where talented students from all around the world gather to study and become leaders in the field of music. PMC and Curtis have partnered in the past to bring to our patients and research participants classical music in their homes and at Memory Cafés.

Events will be held at Christ Church Neighborhood House, 20 N. American Street, Philadelphia, PA.To RSVP, contact Alison Lynn at 215-360-0257 or alison.lynn@uphs.upenn.edu.

By Joyce Lee

On average, some amount of decline in memory and thinking skills is expected with age. But every older adult experiences cognitive aging and decline differently. Some develop neurodegenerative disease that hastens cognitive decline, while others preserve cognitive skills into their later years.

Making changes to reduce the risk factors in your life, such as diet, physical exercise, social activity, and cognitive engagement, is key to staying on the path of steady cognitive skills with advancing age.

This is what Dawn Mechanic-Hamilton, PhD, ABPP/CN, addressed in her talk on healthy brain aging to a group of older, professional women in the Ralston Center in late October. Dr. Mechanic-Hamilton is the Penn Memory Center director of neuropsychological services and cognitive fitness programs.

Penn Memory Center Scholar Laura Wisse, PhD, was selected to present the 2018 Sanjeev Kumar Memorial Lecture at the annual Biomedical Postdoctoral Council Symposium on Monday, November 5.

In her lecture, which followed a series of presentations related to biomedical research, Dr. Wisse discussed her work on the effects of Alzheimer’s disease and aging on the hippocampus using a newly developed postmortem atlas. Dr. Wisse draws aspects of her data from the PMC Aging Brain Cohort (ABC) study.

At PMC, Dr. Wisse works with PMC Co-Director David Wolk, MD, associate professor of neurology, and Paul Yushkevich, PhD, associate professor of radiology in the Perelman School of Medicine. Dr. Wisse’s main interests are imaging of the medial temporal lobe in aging and diseases such as Alzheimer’s disease and Major Depressive Disorder. She is also a member of the Penn Image Computing and Science Lab.