By Melissa Moody, Penn Medicine

Close your eyes and imagine a person with Alzheimer’s disease. Now open them. Is the person you imagined Black?

If not, maybe they should be, according to Penn Memory Center Neurologist Roy Hamilton, MD, MS, an associate professor of Neurology and Physical Medicine and Rehabilitation at the Perelman School of Medicine. “Looking at the relative prevalence of the disease in different populations, the prototypical person you imagine when you close your eyes ought to be Black or Latinx, because the risk of Alzheimer’s disease and related neurodegenerative conditions is so much higher in communities of color.”

By Danny Yarnall

Researchers from the Penn Memory Center and around the world convened July 27-31 at the Alzheimer’s Association International Conference (AAIC). Instead of meeting in a major metro, like previous host cities Chicago or Los Angeles, AAIC was held in a virtual, free, and public format.

All who registered have for the remainder of the month access to an on-demand library of presentations on topics ranging from dementia care biomarkers and machine learning. 

PMC was well-represented at the conference with 13 researchers presenting more than 30 abstracts, while also highlighting PMC research through lectures, posters, and discussion sessions.

Dementia care can be a struggle for both the care recipient and caregiver. Caregivers could feel overwhelmed and recipients feel cornered now more than ever with public health restrictions limiting access to activities, groups, help outside the home.

Arden Courts Memory Care Community and care expert Teepa Snow, MS, ORT/L, FAOTA will host a webinar at 3:00 p.m. EDT Wednesday, August 18, 2020, for caregivers who want new strategies managing their loved ones’ daily care.

Teepa Snow is an occupational therapist with four decades of experience and the founder of Positive Approach® to Care (PAC), a company that provides dementia training and care services to clients worldwide. Teepa will host a seminar on how to respond to the most common symptoms and behaviors of people living with dementia and how to accept the changes that come with dementia care without losing control or feeling overwhelmed.

You can register for the webinar here.

By Danny Yarnall

Shana Stites, PsyD, MA, MS, recently was a part of the 2020 Butler Williams Scholar’s Conference gathering of rising aging and dementia scholars in early July. 

Dr. Shana Sites is a PMC Clark Scholar, a clinical psychologist, and a researcher with the Penn Program on Precision Medicine for the Brain (P3MB). Applications for the program opened in October 2019 and closed in February 2020. The pool of potential attending scholars had to hold a doctorate and either engage in aging research or actively consider working the field. The NIA announced the accepted scholars in April of this year.

By Kamila Ahmad

Penn Memory Center neurologist Sanjeev Vaishnavi, MD, PhD, was recently named a member of the Alzheimer’s Clinical Trials Consortium (ACTC) Early Career Project Evaluation Committee (PEC). 

ACTC is a clinical trials infrastructure launched in December 2017 and designed to accelerate and expand studies for therapies in Alzheimer’s disease and related dementias. Through the PEC, ACTC will improve diversity amongst early-career investigators and professionals while providing mentorship for research fellows. 

At PMC, Dr. Vaishnavi conducts clinical research to discover better ways to diagnose and treat neurodegenerative diseases, with an emphasis on early diagnosis and prevention. He specializes in the diagnosis and treatment of older adults with cognitive impairment and dementia, including Alzheimer’s and other neurodegenerative conditions, and training medical students, neurology residents, and fellows to be the next generation of leaders. 

By Kamila Ahmad

Historically, a patient would not be diagnosed with Alzheimer’s disease until after the onset of cognitive decline. Biomarkers such as amyloid and neurodegeneration are changing that. 

Researchers are able to use these and other biomarkers to identify individuals with “preclinical” Alzheimer’s disease, even if the individual does not yet report symptoms like memory loss. This can help develop clinical trials that hope to intervene early and potentially prevent dementia, but it also requires additional ethical considerations, Clark Scholar Emily Largent, PhD, JD, RN said on a recent episode of the Finding Genius Podcast. 

By Kamila Ahmad

When taking steps toward better brain health, consider the two-step. 

Music and dance can stimulate brain activity, manage stress, and help those living with dementia, stroke, and Parkinson’s disease, according to a new report from the Global Council on Brain Health. 

 “Music is a universal language that everyone can enjoy with remarkable benefits,” said Sarah Lenz Lock, Executive Director of the GCBH. “This report suggests music can have a powerful role to play in healthy aging by enriching our brains’ activity, improving our moods, and fostering social connections.”  

By Danny Yarnall

ARTZ Philadelphia will honor a beloved member of the PMC family, the late Carl Duzen, with a new program this month.

ARTZ Notes will be a regular music program offered through ARTZ aimed at recreating the small intimate concerts Carl and his wife, Susan Jewett, would hold in their home. 

“His legacy…is everywhere in the ARTZ Philadelphia community and we are honored to launch this program in his memory,” ARTZ Philly said in an announcement for the event.

ARTZ Notes will launch 11 a.m. to noon on Tuesday, July 21 and feature Rabbi Beth Janus. Rabbi Janus will lead the group as they engage with songs, storytelling, and Jewish culture. 

While registration for ARTZ Notes with Rabbi Beth Janus has closed, you can still sign up for the August 15 event, featuring singer-songwriter and educator Keisha Hutchins-Hirlinger. This event will run from 1:30 p.m. to 2:30 p.m.

Cara Kiernan Fallon has completed her two-year postdoctoral fellowship in Medical Ethics and Health Policy at Penn, where she was also a Clark Scholar at Penn Memory Center and an associate fellow with the Center for Public Health Initiatives.

While at Penn, her work focused on the historical, ethical, and cultural aspects of aging and chronic disease. She published on definitions of health over the life course with Dr. Jason Karlawish, gender stereotypes in chronic disease, and has forthcoming articles on disability in old age. Supplementing her academic articles, she has lectured at Didactics and Geriatrics Grand Rounds, and she appeared as a guest on ESPN’s Inside Medicine radio show to discuss her work. Her writing has appeared in the Wall Street Journal and Stat News.

By Danny Yarnall

Penn Program on Precision Medicine for the Brain (P3MB) researchers and their collaborators are calling for a revision of studies to better consider persons living with dementia in order to provide vital data for future care interventions.

Embedded Pragmatic Clinical Trials (ePCTs) try to make research look as much like actual care as possible. They are scored on their “pragmatism” or how closely they resemble standard care. If a study is designed well and its methods closely hew to what clinical care looks like in a particular care setting, it can provide highly actionable information that healthcare professionals and policymakers can use to improve care for people in that care setting.

Currently, relatively few ePCTs are being used in Alzheimer’s research. Meanwhile, a fragmented healthcare system, compounded by a lack of specialists to treat the growing number of persons with dementia, often falls short of providing high-quality care to the some five million people living with Alzheimer’s disease and related dementias in the United States and supporting their care partners. While potentially valuable, ePCTs in persons living with dementia present some ethical hurdles that need to be considered and addressed.

By Sharnita Midgett

Many things have changed in the past several months. Each of us has adapted and answered the call to work towards a healthier future in our own way — practicing social distancing, serving as an essential worker, sewing masks, comforting others, or lending our skills whatever they are.

Together, through our good work, we will get through this unprecedented time.

For the ABC team, adapting meant pausing in-person visits and instead conducting visits remotely, over the phone or online via a video meeting. Many of you had to learn a new system and adapt to changes, but you remained active, flexible, and as willing as ever to contribute.

Thank you!

By Sharnita Midgett

A sudden change in thinking or behavior, known as delirium, affects as many as half of all Americans ages 65 and older once they are admitted to a hospital. Despite this, delirium is still underrecognized by medical professionals. As the Global Council on Brain Health wrote, “you likely have never even heard of it.” 

The Global Council on Brain Health (GCBH) discussed what delirium is and released several recommendations to prevent and treat delirium in a recent report. PMC Co-Director Jason Karlawish, MD, is a member of the GCBH Governance Committee. 

“Delirium is sort of a product of many different factors coming together: an aging brain, one that’s acutely ill; going to a hospital, a changing environment; a host of other changes, a host of other noxious stimuli to the brain from some of the medications that are given,” Dr. Karlawish told Being Patient in a discussion on delirium.

By Carlos Thomas

At the Penn Memory Center, July means a changing of the guard within the Clinical Fellowship program.

This summer, we welcome Dr. Kyra O’Brien as a new clinical fellow, advance Dr. Sara Manning into her second year of the fellowship program, and offer our best wishes to Cognitive and Behavioral Neurology Clinical Fellow Dr. Lauren McCollum.

By Hannah Messinger, Penn Medicine

The brain is one of the most complex systems in the body, controlling movement, memory, communication, emotion, thought, and more. Unfortunately, serious diseases and injuries such as stroke, dementia, and psychiatric disorders can impede and disable core functions in the brain. Now, thanks to recent advances in neuroscience, neuroengineering, and other converging fields, experts are exploring the use of neuromodulation—noninvasive brain stimulation—to restore these functions in the brain, and Penn Medicine has launched a new center to study this science.

The Penn Brain Science, Translation, Innovation, and Modulation (brainSTIM) Center brings together a team of leading neuroscientists, neurologists, psychiatrists, psychologists, and engineers at Penn using neuromodulation techniques to research, repair, and enhance human brain function—the first translational center of its kind in the region.

The brainSTIM Center is led by Roy Hamilton, MD, MS, a neurologist at the Penn Memory Center and an associate professor of Neurology and Physical Medicine and Rehabilitation at the Perelman School of Medicine in the University of Pennsylvania. The center will be a hub for developing new treatments that use neuromodulation—direct stimulation of the brain with electrical signals or magnets—to reorder, reorganize, and restore brain function in patients suffering from various types of neurologic disorders such as dementia and stroke and psychiatric disorders like anxiety.

By Danny Yarnall

The Penn Memory Center Scholars Program — the cornerstone of PMC’s efforts to train the next generation of Alzheimer’s disease researchers — is now named after the man responsible for first launching the Center.  

The new title, The Christopher M. Clark Scholars Program at the Penn Memory Center (PMC), honors the late Dr. Clark, PMC founding director, for his contributions to Alzheimer’s research. This commitment also underscores the belief that perspectives from psychology and economics belong at the table just as much as neurology and geriatrics when it comes to our work. 

“Chris Clark was committed to a vision: excellence in Alzheimer’s disease diagnosis, care, and research required a diversity of disciplines and sciences working and learning together. The Christopher M. Clark Scholars Program was founded to fulfill that vision,” said PMC Co-Director Jason Karlawish, MD. “We seek to nurture and support the best minds and to instill in them the virtues Chris lived. He understood the value of listening, tolerance, and a consistent and unwavering commitment to professional ethics.”

 

The number of persons living with dementia is expected to more than double by 2050, and more than half of primary care physicians feel the medical profession is unprepared to handle the increase in cases.

This and other challenges are detailed in the Alzheimer’s Association’s annual report Alzheimer’s Disease Facts and Figures. The report examines the state of Alzheimer’s Disease in America and includes a new special report, “On the Front Lines: Primary Care Physicians and Alzheimer’s Care in America,” that addresses the dearth in specialists, training, and confidence primary care physicians have in diagnosing and treating Alzheimer’s.

By Danny Yarnall

Pamela Bryan could tell her husband David was struggling. Social-distancing restrictions shrunk their world to their East Oak Lane home and David, who lives with Mild Cognitive Impairment, started faltering in his memory more than usual.

“I noticed a decline,” she said. “There were changes in his forgetfulness, like where he was, and I’d have to remind him that this was our house.”

Isolation has left many caregivers feeling overwhelmed by constant care and presence with their loved ones, with fewer options to find relief and time to themselves. Some people living with dementia are more vulnerable to confusion and decline as routines they grounded themselves in are disrupted. One pilot program from Penn Memory Center and Temple University is adapting to meet caregivers’ needs both now and in the future.

Once a resource for caregivers and their loved ones to receive in-home respite care and engagement, Time Out Respite Care is pivoting to an online pilot program called Time Out Weekly Smile.

By Danny Yarnall

In 2019, after a quarter-century of scholarship in theater arts, Anne Basting, PhD was a veteran in the theatre world and experienced on many stages, but none like the stage at Morgantown Care and Rehabilitation in Morgantown, Kentucky.

It was the opening for the first of three adaptations of Peter Pan, performed at 12 rural nursing homes scattered across the state. Their take on the classic children’s story was born out of hundreds of sessions facilitated by Dr. Basting and trained volunteers from her TimeSlips organization and performed by residents, volunteers, and staff.

“These residents, several of whom had not been out of their rooms for months, were about to welcome an audience to see them and their nursing home in a completely new light. They were inviting their audience to see beauty and meaning in a place where most people only see overwhelming loss,” Dr. Basting recalled in a virtual discussion with the Penn Memory Center on Wednesday, May 27.

By Danny Yarnall

The COVID-19 pandemic has left many healthcare providers scrambling for resources to treat cases over the last several months. And public health officials fear a resurgence in cases. Doctors and healthcare professionals may be forced into difficult decisions: whom do you save?

In a recent paper published in The BMJ, authors Andrew Peterson, PhD; Penn Memory Center Clark Scholar Emily Largent, JD, PhD, RN; and PMC Co-Director Jason Karlawish, MD, analyzed the ethics of allocating scarce medical resources in the COVID-19 pandemic while addressing potential harms to at-risk populations.

“The potential for [allocation decisions] to disproportionately affect vulnerable populations—including older adults, people from minority communities, or people with disabilities—is a particular concern,” the authors wrote.

We are a nation, a city, at a crossroads.

Driven by the unjust killings of George Floyd, Ahmaud Arbery, Breonna Taylor, and countless other Black individuals, Americans are confronting the painful truth that discrimination and systemic racism are present in our daily lives. Across the globe and within our own West Philadelphia neighborhoods, people are taking to the streets with a clear message: Black Lives Matter.

By Danny Yarnall

Emily Largent, PhD, JD, RN, was recently selected to be part of the Greenwall Foundation’s Faculty Scholars class of 2023.

“I’m thrilled to have the Greenwall Foundation’s support to work on my project, ‘Autonomy on the Precipice of Cognitive Decline,’ Dr. Largent said. “This project will examine—from ethical, legal, and social perspectives—how our evolving understanding of Alzheimer’s disease is redefining and reshaping the patient experience.”

By Danny Yarnall 

Three Penn Memory Center (PMC) research coordinators — Allie Weiss, Sidnei McCrea, and Olivia Sykes — are departing the center this summer as they prepare to begin their medical school careers.

Weiss joined PMC in 2017 and has been instrumental to the Phase III Biogen study as a research coordinator and conducting cognitive assessments for our Aging Brain Cohort (ABC) Study. She will attend Sidney Kimmel Medical College at Jefferson University.

“Her intelligence, dedication, and kindness were apparent in all the work she did during her time at the Penn Memory Center,” said PMC Co-Director David Wolk, MD. “Our staff, faculty, and patients will miss her, but we are very excited for the many contributions she will make as a physician.”

By Danny Yarnall

A bill aimed at protecting seniors from financial scams was recently introduced by U.S. Senators Amy Klobuchar (D-MN) and Jerry Moran (R-KS).

Presented on Thursday, May 21, 2020, The Protecting Seniors from Emergency Scams Act calls for the Financial Trade Commission (FTC) to submit a report to Congress on COVID-19 scams directed against older adults along with suggestions on how to stop such scams.

In a time where state and federal government efforts look to provide relief to its most at-risk citizens, scammers look to prey on seniors. The IRS sent out an alert in April warning against phishing scams, specifically those requiring confirmation of financial information to receive coronavirus stimulus checks.

“Now during the COVID-19 pandemic, these scammers are using fear and uncertainty to take advantage of our vulnerable populations,” Sen. Moran said in a statement.

Join the Penn Memory Center Wednesday morning for a discussion with gerontologist Anne Basting, PhD, an innovator in dementia care, MacArthur “Genius Grant” recipient, and author of the new book, “Creative Care: A Revolutionary Approach to Dementia and Elder Care,” available now through HarperCollins Publishers.

When: 9 a.m. to 10 a.m. Wednesday, May 27, 2020

Where: BlueJeans (Google Chrome recommended)

Thanks to a generous donation, the Penn Memory Center social work team has ten $100 gift cards to Starr Restaurants to give away. These gift cards can be redeemed now for take-out or saved for when restaurants reopen.

The anonymous donor has requested that these cards go to PMC caregivers who are experiencing financial hardship during the COVID-19 pandemic. If this describes you, enter the drawing below.

Winners will be selected randomly and announced on Friday, May 29. Gift cards will be mailed directly to recipients. Good luck!

Questions? E-mail felicia.greenfield@pennmedicine.upenn.edu.

By Melissa Kelley and Danny Yarnall

The COVID-19 shutdown has brought a shift to academic schedules across the board, leaving little time to honor interns and student workers. While we were not able to recognize them in person, we would like to congratulate our team of social work students on their tremendous efforts and their completion of the University of Pennsylvania’s Master of Social Work program.

“Our social work students play a vital role in providing support to our patients and their families and have enabled us to greatly expand the scope of our work,” said Alison Lynn, PMC’s associate director of social work. 

Penn Memory is continuing its virtual caregiver forums virtually in response to the uncertainty and tension that the COVID-19 pandemic has added to your distress around caregiving.

These forums are a place for caregivers with a loved one in facility care and caregivers with a loved one at home to connect and gather. Our goal is to provide you with a virtual place to meet, share stories, gain new perspectives, and share coping strategies with others going through a similar experience during the COVID-19 pandemic.

The PMC social work team will build on the success of these forums by continuing to provide this virtual space. We may not have all the answers, we hope you will take this as an opportunity to feel a little bit more connected.

Upcoming forums:

By Danny Yarnall

Jacqueline “Jackie” Witzman, a public supporter of the Penn Memory Center and its research, died on April 22 of Alzheimer’s disease. She was 69 years old.

Jackie Witzman, together with her husband Jack, received care at the Penn Memory Center. Later, they volunteered to participate in clinical trials, making the journey via train from their home in Delaware. They soon asked for opportunities to contribute to research and care and so became public spokespeople about their experiences as patient and research participant and caregiver and study partner. 

In the 2017 issue of InSight magazine, the cover story “The Importance of Study Partners” featured their photograph and story.

Editor’s Note: In November 2019, we published an interview with Michael Duong, a second-year medical student at the University of Pennsylvania and a caregiver for his grandfather, who is living with Alzheimer’s disease. After UPenn canceled in-person classes for the remainder of the year, we asked Michael to reflect on his personal experience of the last two months.

By Michael Duong

While the sun shone brightly outside, an unsettling stillness filled the hospital floors. I could hear my footsteps echoing, which normally only happens on night or weekend shift. It was mid-March here at Penn and outpatient clinic visits, elective surgeries and emergency department visits were becoming less frequent. I saw firsthand the concern for COVID-19 ramping up over the course of two months, on my emergency medicine rotation in February and then my psychiatry rotation in March. At that time, medical schools across the country told us students to stay home and flatten the curve, even though there were split opinions. Some of us wished to serve on the frontlines and continue learning in person. Others wished to help limit exposure to COVID-19. Both perspectives were valid and we waited anxiously to see how medical schools would respond, what provisions would be provided for our education. How could we help the medical community when we just started our clinical learning? How would our learning be affected?

By Danny Yarnall

Carl Duzen — scientist, educator, artist, and friend of the Penn Memory Center — died on April 16 at the age of 83.

The popular and engaging Cognitive Comedy workshop had just restarted under new guidance when all Penn Memory Center activities were postponed. Now the program is back in an online format.

The improv workshop will be held virtually every Tuesday from 1:30 to 3 p.m. via Zoom. Email jean.haskell205@gmail.com to sign up.

Penn Memory Center Program Coordinator Meg Kalafsky and Executive Director Felicia Greenfield and new instructor Jean Haskell worked together to continue to bring Cognitive Comedy to the PMC community.

“During this time of social distancing and uncertainty, we must find ways to connect and foster a sense of community and teamwork,” Kalafsky said. “Through the use of various improv activities, Cognitive Comedy brings people together through the use of laughter and creativity in ways that can trigger healthy physical and emotional changes.”

Haskell, a retired organizational development consultant, has taken part in theater groups and performances for years and has spent the last decade teaching theater classes at Temple University’s Osher Lifelong Learning Institute (OLLI), where adults 50 and over can take courses in subjects ranging from World Economics to photography.

Haskell aims to bring the same lively spirit to online sessions by creating fun activities that require quick thinking and readiness. 

By Danny Yarnall

Social distancing is in effect across the United States in an attempt to prevent further infection of the COVID-19 virus, especially among more vulnerable populations, and ease the burden pressing on the healthcare system.

The images of children and grandchildren separated from their loved ones in nursing homes and eldercare facilities through panes of glass illuminate the pain of isolation under social distancing. In a hospital setting, that isolation can result in truly dangerous outcomes for vulnerable patients, said Penn Memory Center Co-Director Dr. Jason Karlawish. 

Dr. Karlawish joined a panel of national experts to discuss the benefits and harms of social distancing, its potential mental health effects, and what relaxation measures would eventually look like as a part of a webinar series form the American Public Health Association and the National Academy of Medicine.

Important Notes:

• Penn Memory Center clinical visits are available in-person and through video conference. COVID-19 screening is conducted for all patients.
• As part of your clinical visit, a tester will walk you through the Functional Rating Scale. Feel free to print a copy of the test so that you can follow along.
• The Penn Memory Center is open for research visits. Implementing COVID-19 safety guidelines is a priority for researchers during visits. For information on research participation opportunities click here.
• Penn Memory Center social work visits are available via phone or video conference. Please ask your doctor or contact Alison Lynn at 267-627-4038 or lynn@pennmedicine.upenn.edu
• Most programs, groups, and outreach events are now held virtually through zoom. Programs running are:
  • Creative Expression Through Music
  • Shake It Up Virtual Exercise Program
  • Caregiver Class and monthly support groups
  • Dance for Health
  • Memory Café
  • Cognitive Comedy
  • Cognitive Fitness Program

The COVID-19 Stay-at-Home Survival Guide for Those Caring for a Loved One with Dementia

By Alison Lynn, LCSW & Cynthia Clyburn, LSW

Measures are being taken to reduce the risk of exposure to COVID-19 (Coronavirus). In addition to frequent hand washing, the CDC has advised practicing “social distancing” by avoiding close contact with those that are sick, staying home as much as possible, and wearing a face mask in public. There has been reduced access to care programs and services, such as adult day centers and home care, which many individuals with dementia and their caregivers rely on for support. Isolation, increased stress, and changes in daily routine can generate challenges for you and your loved one with dementia. This article offers guidelines for managing daily care at home and coping with anxiety during this difficult time.

Learn about COVID-19 and how to protect yourself here: https://www.cdc.gov/coronavirus/2019-ncov/index.html

Some Basic Facts:

The information below represents what we currently know about COVID-19. We present these facts starkly because this is a serious situation. Having good information should help you to protect yourself and your person with dementia.

Something New – Novel Coronavirus – or COVID-19 – is a new strain of a virus that attacks the respiratory system and other organs as well. Because it is a new strain, very few people can resist it, no matter how hardy they may be. Our bodies haven’t seen this strain before, so our immune systems haven’t developed ways to fight it off. Also, there is, as yet, no vaccine, so no medical measures can yet be taken to protect us against it.

Serious – COVID-19 is a serious disease threat. The Centers for Disease Control and Prevention (CDC) have reported over 10 million cases and more than 230,000 deaths of COVID-19 since Jan. 21, 2020 in the United States. The illness appears to have more serious outcomes than the flu, and death rate predictions are higher.

Risk Factors – COVID-19 requires the body’s immune system to mount a response to fight it off. So, anyone who has a weak immune system is at risk. Two factors are associated with weakened immune response: age and underlying chronic conditions. Those over 60, and especially those over 80 (even those who seem fit), are at higher risk for acquiring the illness. Also, individuals with chronic conditions like cancer, lung disease, diabetes, high blood pressure, and heart disease are at increased risk for COVID-19.

Points of Entry – The illness enters the body through the nose, eyes, or mouth and then proceeds to the lungs. This is why we are advised to avoid touching our face. It may also enter through particles in the air. This is why social distancing and avoiding crowded situations are recommended.

Alzheimer’s and COVID-19 – The person for whom you provide care is in a high-risk situation. Most persons living with Alzheimer’s are over the age of 65 (one risk factor), and most persons over 65 have at least one, and typically more than one, chronic illness (the other risk factor).

The CDC website is an excellent source of reliable information

Local Health Department Numbers can be found here

Social Distancing:

Many of you have become familiar with the term “social distancing” or the practice of seperating yourself and your person from close contact with groups of people. This is admittedly very difficult, so here are some thoughts:

• If you are working outside the home, see if it is possible to work at a distance through telecommuting means (phone and videocall contact, etc.).

• Examine patterns of social interactions.
  • If you regularly attend worship services, see if your place of worship offers streamed services, or consider using the regular time of attendance as a time of home worship.
  • If you take your person shopping or to malls, reconsider. If you must, perhaps use smaller shops at off-hours, and avoid very crowded places. Call friends, family, or neighbors to see if they are going to the store and can pick up items you might need
  • Think about outings that present minimal risks: going to large parks, taking walks

• Limit going out to restaurants – or stop altogether, order take out and see if they can deliver curbside.
  • If you want to support your favorite restaurants, bars, and other small businesses consider purchasing gift cards that can be used once regular operations resume.

• Here’s a really hard one: family visits.
  • Keep them small – one or two people at a time
  • Ask everyone who comes to follow the same safety rules you are (wash hands)
  • No grandkid visits

General Tips for Caregivers:

• Stay calm. People with dementia are very aware of non-verbal communication such as tone of voice and body language, and will often mirror it. If you are calm, your relative is more likely to be calm as well. See below for our tips on managing your own anxiety
• Expect some changes. Stress, anxiety, and changes in routine can all have a negative impact on your relative’s cognition. Since the onset of the pandemic, we have seen many of our patients’ disease progression quicken.
• Look out for sudden, drastic changes, though. As always, this could be a sign of pain, illness, or infection. If you see this, contact your relative’s doctor.
• Limit TV news. People with dementia may not remember the content of a TV show or a movie, but they’ll remember how it made them feel. Try to avoid exposure to too much panic-inducing coverage and stick with something lighter, like a cooking or travel show.
• Simplify the message. If your relative asks what’s going on, try to make your explanation as simple as possible, focus on positives, and redirect to a favorite activity. A good place to start is: “there’s an illness going around, but you’re safe with me inside the house. Can you help me remember how to play that game you like?”
• Set a daily routine. Try to have your relative wake up, eat, and go to sleep at around the same time every day, if possible. You can also try to create a schedule to keep your relative busy and engaged throughout the day, which will improve their mood and decrease challenging behavioral symptoms. See below for an example.
• If your person is living in an assisted living or skilled nursing facility: It is increasingly likely that visitors, even close family, will not be permitted to visit relatives in such facilities. The staff will continue to provide care and comfort, but you will not be able to have in-person time with the person that may be important to you. Ask if your loved one’s residence has a program for facilitated video calls or outside visits in place. Or, consider asking family and friends to send snail mail to the facility. If you are alone and feeling this as yet another loss, take action. Try to go out for a walk, call family and friends, listen to your favorite music, look at scrapbooks, read a good book, or contact a PMC social worker for support. If you belong to a church or synagogue, call and ask to be put on a prayer list. Many religious staff are working from home and can respond to your messages.

Medical Care:

You are very likely in a position where you have to manage your person’s routine and chronic health care as well as to respond to changes in condition or react in an emergency situation. It’s important to recognize that, with COVID-19, you need to have a plan for how to handle some medical situations that might arise in the course of caregiving.

If you have a primary care provider (a nurse practitioner, physician, of physician assistant), contact the office to see what procedures the office has put in place for handling routine visits and visits related to any concerns you may have should you observe possible COVID-19 symptoms. If they don’t, ask for advice about

• Handling routine and chronic care situations that you’d usually manage by bringing the person to the office.
• Dealing with possible COVID-19 symptoms
• Expected delays for elective procedures
• Responding to emergency situations – should you call the office first? Go directly to an Emergency Department?

If you feel you have an emergency, but are not sure, and cannot get through to your primary care provider, call your local Emergency Department. Most have a nurse or physician on duty who can offer advice about the need to come in immediately or wait at home.

If you think you or your person might be showing signs of COVID-19 and think you should be tested, it’s important to call your primary care provider (or the Emergency Department) first. They may be able to provide advice about where and if you need to be tested immediately or to wait. The clinic office or Emergency Department may not be where you can get tested

If you are a participant in a research study, call your research coordinator for instructions for follow up.

Anxiety-busting Tools for Caregivers:

• Take 10 slow, deep breaths in through your nose and out through your mouth.

• Play the 5-4-3-2-1 game to ground yourself: name 5 things you can see, 4 things you can hear, 3 things you can touch, 2 things you can smell, and 1 thing you can taste.

• Do some progressive muscle relaxation.  Tense and relax one body part at a time, starting with your toes and slowly moving your way up to your head.  Tense for about 5 seconds, and relax for about 30 seconds.
• Plunge your face into a bowl of ice water for 10-30 seconds at a time. This triggers your “dive reflex,” which allows your parasympathetic nervous system to calm you down.

• Sit or lie down in a comfortable position and listen to a guided meditation, like these from Tara Brach:https://www.tarabrach.com/guided-meditations/

• Pamper yourself: put on some soothing music, light a candle, and take a hot shower or bath.

• Go for a walk around the block, or do an at-home yoga video, like these from Yoga With Adrienne:https://www.youtube.com/user/yogawithadriene

• Call a close friend or family member and catch up for a few minutes.

• Reach out to a Penn social worker for emotional support.  You can email Cynthia at Cynthia.clyburn@pennmedicine.upenn.edu or Alison at Alison.lynn@pennmedicine.upenn.edu.

• Call the Alzheimer’s Association’s 24/7 hotline (800-272-3900) or the Alzheimer’s Foundation of America’s 24/7 hotline (866-232-8484).

Meaningful Engagement:

Meaningful engagement for your relative with dementia will be a crucial component of your caregiver toolbelt during this time of isolation because it can improve mood, improve sleep, decrease agitation, and decrease challenging behavioral symptoms.  Focus on pleasant, stimulating, and meaningful activities that foster emotional connections and engage your loved one’s senses and memories.

 

General Useful Tips:

• Focus on process rather than results.  If your relative spends an hour sorting items and they’re more jumbled than they were to begin with, that’s ok!  It’s most important that they are engaged.

• Break activities into small, manageable chunks. For example, if your relative used to throw elaborate dinner parties, try giving them small, discrete tasks one at a time (ie: “please mash these potatoes,” or “let’s go through this cookbook together and choose a menu”).

• Focus on roles.  Humans want to feel useful!  If your relative worked as a nurse but had to retire, think about what they might have gotten out of their work.  They probably enjoy helping and nurturing people during a difficult time, so you might try giving them a “case” and asking for advice.   Or, introduce any activity by saying, “I need your help with this.  Can you show me how to do it?”

• Choose activities that can be done in short bursts.  People with memory loss often have shorter attention spans and difficulty concentrating.

• Choose physical activities over sedentary ones, when possible.

• Have a few activities available so if your relative tires of one you can move on to another quickly.

• Have materials set up in advance and keep the surrounding environment as distraction-free as possible.

• Change your approach:
  • Instead of asking “Would you like to color?” Try, “Now it’s time to color” or “I would love for you to join me.”
  • Instead of asking at all, sit down next to your relative and quietly start doing the activity yourself.

• If your relative refuses an activity, don’t force them to participate.  You can always try again in a few days, weeks, or months.

• Be confident and positive in your approach. If you’re skeptical that your relative won’t like an activity, they may pick up on your non-verbal cues and feel skeptical as well.

Activity Ideas:

• Plant seeds together, water plants, or arrange flowers
• Listen to favorite music
• Listen to a book, short story, or poetry on tape
• Sing or dance
• Pray or read religious texts
• Bake together— have your loved one stir the batter, decorate with icing, etc.
• Watch a favorite old movie or TV show
• Call a close friend or relative
• Work on a puzzle, crossword puzzle, word search, etc.
• Play a simple board game
• Go for a walk around the neighborhood
• Reminisce — flip through old photo albums and talk about happy memories, or write them down to create a family history
• Clean the house together — have your loved one wipe down surfaces, wash non-fragile dishes, vacuum, rake leaves, etc.
• Do laundry — have your loved one fold towels, match socks, or “iron” with an unplugged iron
• Use aromatherapy
• Try arts and crafts — paint, knit, string beads, adult coloring books, make homemade bookmarks, etc.
• Write thank you letters to first responders
• Make a collage or vision board
• Start a gratitude journal together and write down what makes you grateful
• Sort: coins, silverware, linens, collections, etc.
• Spend time with your pets, or offer to take a neighbor’s dog for a walk
• Look through cookbooks and plan a dream dinner party menu
• Have “spa time”— try a hand massage, paint nails, make homemade scrubs
• Put items in a shopping basket online (you don’t have to check out!)
• Play online brain games
• Play online brain games
• Watch videos on the 4K Relaxation Channel or go on a “virtual” train ride
• Participate in a virtual exercise class via Ralston Center (link)
• Play balloon volleyball or ‘bowl’ at home on any hard surface using old cans and any kind of ball
• Go for a drive and play I Spy, or simply listen to music and enjoy the scenery
• Go on a virtual tour of a museum (ie: https://www.philamuseum.org/collection)

Products for Home Activities:

• https://www.enasco.com/c/Senior-Activities-Nasco
• https://www.alzstore.com/alzheimers-dementia-activities-s/1673.htm

Sample Daily Routine:

Morning:

• Wake up, wash, brush teeth, dress
• Prepare and eat breakfast
• Read a short story or poetry together
• Fold laundry
• Go for a walk or try chair exercises
• Work on a puzzle

Afternoon:

• Prepare and eat lunch
• Watch a movie
• Have some quiet time or take a short nap
• Flip through an old photo album
• Tend to plants in the garden
• Wipe down countertops, dust furniture. sweep floors

Evening:

• Prepare and eat dinner
• Wash and put away dishes
• Practice a guided meditation
• Call a relative together
• Listen to soothing music
• Bathe, get ready for bed, read a book

Additional Articles and Resources:

Alzheimer’s Disease:

• https://www.alz.org/help-support/caregiving/daily-care/daily-care-plan
• https://alz.org/help-support/caregiving/daily-care/activities
• https://www.alzheimers.net/checklist-and-daily-care-plan-for-dementia/

Frontotemporal Degeneration:

• https://www.theaftd.org/wp-content/uploads/2018/03/PinFTDcare_Newsletter_summer2016.pdf
• https://www.theaftd.org/living-with-ftd/managing-ftd/

Lewy Body Dementia:

• https://www.lbda.org/encouraging-independence

COVID-19: Coping with Stress and Anxiety: https://www.cdc.gov/coronavirus/2019-ncov/prepare/managing-stress-anxiety.html

At the Penn Memory Center, we understand that the uncertainty and tension of the COVID-19 pandemic has added to your distress around caregiving.

To help as best we can, PMC Social Work leadership will offer two virtual Caregiver Forums (or “mutual aid groups”) to provide you with a virtual place to meet, share stories, gain new perspectives, and share coping strategies with others going through a similar experience. While we may not have all the answers, we hope you will take this as an opportunity to feel a little bit more connected. The meetings are as follows:

Friday, March 20th, 1 PM to 2 PM: For caregivers with a loved one in facility care (assisted living, memory care, or skilled nursing) Click here to RSVP.

Monday, March 23rd 11 AM to 12 PM: For caregivers with a loved one at home with them Click here to RSVP.

By Danny Yarnall

A young man suffers a horrific car accident one night in 1999. “Mr. R” is kept in a hospital bed for more than a month while doctors deliberate on his condition. He does not respond to commands nor any tests to stimulate his senses. He’s released back into the care of his parents and spends the next 12 years in a “vegetative” state, visited by a revolving door of neurologists. He has sleep/wake cycles, but doctors can’t find any evidence he’s aware of the world around him.

But in a 2012 study at the University of Western Ontario, Mr. R is put into a neuroimaging scanner and asked to think of either playing tennis or visiting the rooms of his home for 30 seconds at a time. Remarkably, his scan lights up. A man once thought to be completely unaware is responding to commands, not physically, but with his mind.

Mr. R highlights the importance of using brain scans to find consciousness in brain-injured patients, the subject of a paper published in Bioethics by Andrew Peterson, PhD; Adrian M. Owen, PhD; and Penn Memory Center Co-Director Jason Karlawish, MD. The paper analyzes the benefits and harms of using neuroimaging to assess brain-injured patients as our understanding of consciousness evolves.

By Danny Yarnall

Richard Bartholomew struggled to wrap his head around the doctor’s words. 

He wasn’t even sure what those words meant, at least in terms how they would change the granular, day-to-day life he shared with his wife, Julia Converse, for the last 20 years. 

But there it was, straight from the mouth of the neurologist they sought after Converse struggled to learn a new computer program in late 2007. Decades of studying fine art, passionate work in museums around the country, and more than 30 years of working at Penn did not stop what came back from that brain scan. 

Converse, about to turn 62, had early-onset Alzheimer’s. 

In 2019, PMC held its inaugural “Night Out for Alzheimer’s Disease” at The Prime Rib in Center City. Thanks to the volunteers on our fundraising committee (above), the event raised more than $150,000 to support our research, social work programs, outreach, and training. Our guests’ generosity and enthusiasm inspired us to make the next event an even greater success, but we can’t do it alone.

Over the next year, we need to do the following:

• Find and reserve a venue

• Coordinate catering

• Find and secure a keynote speaker

• Plan additional entertainment

• Seek out corporate sponsors

• Collect raffle and auction items

• Gather donations and sell tickets

• Other tasks as needed

If you have experience with any of these tasks and would like to help build a strong foundation for the Penn Memory Center and its efforts, please apply to join our fundraising committee.

Applications will be accepted through February 29th, and the committee will hold its first meeting (either in-person or via teleconference) in mid-March. If you have any questions, contact Executive Director Felicia Greenfield at felicia.greenfield@pennmedicine.upenn.edu.

How would you respond to learning you have an elevated risk of developing Alzheimer’s disease? Whom would you tell, and what would you say?

To answer these questions, Penn Memory Center and affiliated researchers are working to conduct the REVEAL-SCAN (Risk Evaluation and Education for Alzheimer’s Disease – The Study of Communicating Amyloid Neuroimaging) Study.

By Sharnita Midgett

At the Penn Memory Center (PMC), research partners often are found near the MRI scanner. Less common, however, are stories of finding a life partner there.  

Yet that is the story of Myrna Roach and Donald Jackson. 

“He used to repair CT scan machines,” Roach, a former magnetic resonance imaging (MRI) tech, said in a recent phone interview with Jackson in the background. Laughing, she continued, “then he switched to MRI. He’s here correcting me.” During one MRI repair job, the two caught each others’ eyes, and a series of future repairs led to a relationship a year later. 

That was 45 years ago. The two have since retired, but MRI scans are still part of their story. Each has been in the Aging Brain Cohort (ABC) study for 15 years and had their latest MRI scan in January.

By Danny Yarnall

Imagine sitting in your car, engine idling in the parking lot of your doctor’s office, where she just finished explaining that you have “elevated” amyloid, a biomarker of Alzheimer’s disease. 

You haven’t noticed any memory problems, but she did say that this meant an increased but uncertain risk of developing Alzheimer’s disease. 

How would you react to this information?

Newly published research from the Penn Program on Precision Medicine for the Brain (P3MB) pulls back the curtain on what research participants thought, felt, and did after a similar scenario. Authors included Emily Largent, RN, JD, PhD; Kirstin Harkins, MPH; and Jason Karlawish, MD.

“As the science of Alzheimer’s disease biomarkers evolves, we would expect that biomarker testing will become increasingly widespread among people who are cognitively unimpaired,” said lead author Dr. Largent. “In anticipation of more widespread testing, it’s important to gather evidence to inform how clinicians talk to patients about biomarker results and to prepare patients for what they might expect.”

By John Infanti, PennMedicine.org

The Center for Neurodegenerative Disease Research (CNDR) at the University of Pennsylvania has received a grant expected to total $18.1 million to study the underlying genetic mechanisms that cause Alzheimer’s Disease, Dementia, and Parkinson’s Disease to progress as well as how those mechanisms are related to each other and to the cell-to-cell spread of these disease proteins.

The grant, awarded by the National Institutes of Health’s National Institute on Aging (NIA), will fund four specific projects over the next five years through the NIA Penn U19: A Center on Alpha-Synuclein Strains in Alzheimer’s Disease and Related Dementias.

By Danny Yarnall

Penn Memory Center Scholar Shana D. Stites, PsyD, MA, MS was a featured guest on a recent episode of Minnesota Public Radio with host Kerri Miller.

Dr. Stites was joined by Peter Rabins, MD, MPH, in a discussion on how stigma affects people’s willingness to take novel early-detection methods for Alzheimer’s such as gene-testing for APOE4 or blood tests available to Americans on the horizon. 

Dr. Sites broke down how stigma and lack of treatment would make people think twice about discovering their risk for Alzheimer’s but highlighted the ability to make changes and preparations in life before the symptoms progress too far.

“There is that other question that is being answered by learning gene or biomarker result… ‘now that I know I’m more at risk and I’ll make more aggressive decisions about other parts of my life,’” Dr. Stites said.

By Danny Yarnall

A new Roybal Center with ties to the Penn Memory Center will be the nation’s first to study palliative care of dementia patients. 

The new center — the Roybal Center for Palliative Care in Dementia — is led by Scott Halpern, MD, PhD, who is also the director of the Palliative and Advanced Illness Research (PAIR) Center. The University of Pennsylvania is the only university in the country with two such centers.

Researchers will benefit from a partnership with Genesis HealthCare, the largest owner of nursing homes in the U.S., to create “learning labs” for their pilot studies in nursing homes over the course of the five-year grant.

PMC Co-Director Jason Karlawish, MD, who is director of the Roybal Center Pilot Core and a member of the steering committee, presented on the history of Alzheimer’s treatment and care in a special lecture celebrating the launch. The purpose of the lecture was to familiarize the Penn Medicine community with the diagnosis and management of persons with dementia, including a discussion of the history and epidemiology of dementia, and the roles of family caregivers. Treatment, Dr. Karlawish said, is not solely working toward the goals of eradication or reversal of the disease, but promoting safe and effective management as well.