Last month, the Penn Memory Center held its first virtual caregiver forums in response to the uncertainty and tension that the COVID-19 pandemic has added to your distress around caregiving.

These forums were 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 was 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:

Important Notes:

• Penn Memory Center clinical visits will be on the phone or through video conference until further notice. If you have a visit scheduled, a patient care coordinator will be in touch to help prepare you for this visit.
• 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.
• All research visits at least through March 31 are being rescheduled. If you have an upcoming research visit, a research coordinator will be in touch to reschedule.
• 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.

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

By Alison Lynn, LCSW & Cynthia Clyburn, LSW

Precautionary 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 and staying home as much as possible. There will likely be reduced access to care programs and services, such as adult day centers and home care, that 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, but 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 – It is difficult at this time to have a very accurate picture, but Covid-19 appears to be a serious disease threat. The Centers for Disease Control and Prevention (CDC) include, in their range of possible futures for the illness, a prediction that more than half of the US population could be infected. 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. This is usually temporary, and most people will return to, or close to, their baseline once life returns to normal.
• 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. 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 or read a good book. 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. Have family and friends mail cards and letters to them.

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 if they have put procedures 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.

• 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, 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.
• 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
• Watch videos on the 4K Relaxation Channel or go on a “virtual” train ride
• Do a chair yoga routine:
• Print adult coloring pages

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.