By Danny Yarnall
Carl Duzen — scientist, educator, artist, and friend of the Penn Memory Center — died on April 16 at the age of 83.
An Alzheimer's Disease Research Center
Carl Duzen — scientist, educator, artist, and friend of the Penn Memory Center — died on April 16 at the age of 83.
The Penn Memory Center is proud to announce that our popular Memory Café is going virtual! You can now attend one of our popular Memory Café programs from the comfort of your own home while we all practice safe social distancing.
Upcoming entertainment in this stay-at-home series will include:
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.
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.
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
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
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:
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
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.
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.
Products for Home Activities:
Morning:
Afternoon:
Evening:
Alzheimer’s Disease:
Frontotemporal Degeneration:
Lewy Body Dementia:
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.
The outbreak of the novel coronavirus (COVID-19) has created a unique public health challenge, especially for those among and in contact with vulnerable populations such as older adults and those living with cognitive impairment.
Penn Medicine has issued guidelines to clinicians and staff to reduce risk and maintain a safe clinical environment. University of Pennsylvania faculty and staff have been advised to avoid international travel and large events and to practice “social distancing” to mitigate the spread of the virus. The university also took the unique step of moving classes online for the remainder of the semester.
To that effect, Penn Memory Center is postponing all non-clinical activities and most research visits. Programs such as the Memory Café, Cognitive Comedy, Dance for Health, the Empowering Caregivers series, the Time Out Respite Care program, group counseling sessions, support groups, outreach events, and the Caregiver Class will be postponed until further notice as officials monitor the effect of COVID-19 in the area.
Until March 31, most research visits, including those in the ABC Study, will be rescheduled. Those with scheduled research and clinical visits will be contacted individually by PMC staff. The A4 and Pegasus studies will continue as planned. If you have traveled recently or have been in contact with a sick individual, you may be asked to reschedule your visit. If these study visits are cancelled, participants will be contacted individually by PMC staff. We will continue to evaluate the status of our clinic and research studies up to and beyond March 31.
Meanwhile, you can help prevent the spread of COVID-19 by following recommendations similar to those for preventing the common cold and flu, notably:
Thank you for your understanding in this matter. This is a developing outbreak, and we will keep you informed as best we can. Together, we can protect ourselves and those we care for.
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.
Richard Bartholomew recounts his time as a caregiver in a conversation with Penn Memory Center Co-Director Jason Karlawish, MD, during the second of two lectures designed to outline the history and present of Alzheimer’s Disease care to the recently opened Roybal Center on Palliative Care in Dementia.
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.
The National Academies of Sciences, Engineering, and Medicine need your input for a decade-long plan on how best to prevent, treat, and care for individuals living with Alzheimer’s and related dementias and their care partners.
The National Academies are issuing a call for commentaries from people living with Alzheimer’s Disease and Related Dementias (ADRD) and anyone who currently cares or has cared for someone with ADRD. The commentaries will inform the Decadal Survey of Behavioral and Social Sciences Research on Alzheimer’s Disease and Alzheimer’s Disease-Related Dementias. These decadal surveys outline the 10-year plan for research goals and identify opportunities for prevention, care, and better understanding of the disease in society.
The National Academies are looking for submissions of up to 1,000 words from individuals with Alzheimer’s or other dementias, and individuals that are serving or have served as care partners to individuals with dementia. Submissions can touch on any or all of the topics below as they relate to ADRD:
The deadline for submissions is March 13, 2020.
Information regarding submission guidelines can be found here and more details about the Decadal Survey can be found here.