RESOURCES
COVID-19 and Dementia Care
Dear friends of Dementia Spotlight Foundation,
With the continued spread of Coronavirus Disease 2019, also known as COVID-19, in the United States and around the world, we’d like to share some helpful hints and practical tips for Persons living with Dementia (PwDs) and their caregivers/care partners. A special thanks to William T. Hu, MD, PhD, Associate Professor Department of Neurology, Center for Neurodegenerative Diseases at Emory University School of Medicine for his assistance with these guidelines.
We also want to assure you that we are honoring the CDC, state and local recommendations to suspend all of our in-person education classes and trainings through the end of March. We will reassess next steps and rescheduling of cancelled events at a later time as the restrictions continue to change rapidly over time.
Please be considerate of your neighbors during this overwhelming and chaotic time, especially those who are older or live alone. Though it is imperative for us all to practice social distancing, also be mindful of the isolation it may cause.
We will continue to offer our virtual Memory Cafes and will be adding a virtual Caregiver Support Group beginning Tuesday, March 24th at 11:00 am EST in effort to help people keep connected and decrease social isolation. Please visit the Dementia Support Groups section under Programs on our website, https://dementiaspotlightfoundation.org/dementia-support-groups/ , for more information regarding our virtual support groups or contact Alyss Amster at alyss@dementiaspotlightfoundation.org.
Here are some helpful hints and practical tips for Persons living with Dementia (PwDs) and their care partners living at home or in independent living. This general advice does not apply to everyone and does not constitute professional medical guidelines. Please contact your doctor if you have questions about your specific situation.
1. Remember that older (60+) adults are very vulnerable to COVID19 virus. Even if their younger care partners (adult children, paid help) are healthy, these younger people can carry the virus without knowing it or having mild symptoms not dissimilar to seasonal allergies. For now, frequently clean surfaces accessed by PwD with cleaners/wipes known to kill the virus. Care partners should also wash hands with soap or use hand sanitizer frequently, and consider wearing mask & gloves if there is any symptom of cough, sore throat, or mild fever.
2. Many communities have recommended social distancing to reduce the number of people who are sick at any given time. Because older people are more vulnerable to COVID19, they should stay home as much as possible. However, they can still exercise in their yards multiple times a day, take walks in the early morning when there are few others around, keep the lights on from 7AM to 6PM, and stay physically active during the day (e.g., engage them to help with cleaning). This will ensure they still get tired to sleep through the night.
3. Taking care of someone else at a time like this will challenge your own health. If you know other care partners, set up a phone tree/network to check on each other & health and well-being. Make a plan for what to do if the PwD & primary care partner gets sick.
4. Many clinics are cancelling appointments which are not urgent or emergent. If you take prescription medicines, make sure you have a 90-day supply.
5. Because people are staying home and regular clinical appointments are cancelled, some clinics may have many people suspected of having COVID19. If PwD needs to be seen by their regular doctor in person, call ahead to see if there is a time/location for people not suspected of having COVID19.
6. A lot of doctors’ visits may be conducted over the computer or tablet in the next few months. Make sure you have a reliable computer/tablet available to communicate with doctors for the PwD, and practice using some of the programs (e.g., Zoom, Skype) by speaking with your family/friends.
7. If you anticipate that there is a need to physically go to a clinic or the Emergency Room, staff there may be dressed in protective gear which can increase anxiety for PwD. Watching people in similar gear on TV can also worsen anxiety. Consider preparing a picture-card at home with someone dressed up in protective gear, and introduce this imagery to PwD as a friendly reminder that they are there to help.
8. Many schools have cancelled classes, and sometimes PwDs and school-aged children are cared by the same family members. If possible, consider having PwDs and school-aged children at physically different locations. If this is not possible, consider having one family member dedicated to helping the PwD .
9. In-person religious services involving others (e.g., church, temple) increase the chance of spreading the virus. There are many TV-based religious services which can be considered. Otherwise, ask your religious leaders about the possibility of conducting phone/internet-based services.
10. If you feel that the PwD is sick with something concerning for PwD, first consider recovery at home with hydration and treatment of fever. If there is a cough, call your doctor and follow their guidance which may include trying a cough suppressant or a short clinical visits. COVID19 testing still has very long lines, and use your best judgement if you are advised to go to one of the testing sites.
11. Consider limiting news broadcasts intake into your home to help decrease anxiety levels and/or confusion or PwDs.
Other important resources:
Local Health Department websites
CDC especially:
https://www.cdc.gov/aging/covid19-guidance.html
Georgia Department of Health:
https://dph.georgia.gov/novelcoronavirus
Florida Department of Health:
http://www.floridahealth.gov/diseases-and-conditions/COVID-19/need-to-know/index.html
Wishing you and your family good health. As always, if there is anything we can help with, please let us know.
All our best,
The Dementia Spotlight Foundation Team
Articles
A Caregiver’s Promise is their Bond
When caring for a person who is living with dementia, you may get to a point where you hear them mutter things that are so bizarre, that there is no making heads or tails of what they are talking about. But keep in mind, through all this chatter, you may come across...
Positively Georgia: Dementia Spotlight Foundation
Whitney Oeltmann and Alyss Amster talk with CBS 46 News about their experiences helping families affected by dementia.
Early-Onset Speaks Out Webinar
Gary Joseph LeBlanc and Whitney Oeltmann host this webinar with special guest Carrie Richardson living with Early-Onset Alzheimer's at age 39 and David Benedetto living with Early-Onset Alzheimer's & Frontotemporal Degeneration age 41, speak openly about their...
Bathing Dilemmas and Dementia
Bathing can be one of most difficult personal care activities that caregivers face. The reason? Bathing and showering is an intense and intimate experience for people with dementia. Such people may perceive this hands-on procedure as being a threatening, even...
The Hand-in-Hand Relationship of Anxiety and Dementia
Over the past several years, I have heard it promoted that anxiety and its symptoms be labeled as hidden elements of dementia. I don’t believe that they are hidden very well, for studies have shown that upwards to 70% of people living with dementia-related diseases...
The Difference between Hallucinations and Delusions
If you should be experiencing the illness of loved ones or if you are caring for patients in a health care setting, it is essential that someone become their advocate; even more so, it is necessary if they are afflicted with Alzheimer’s disease or some other form of...
The Falls of Dementia
Here’s something I noticed many years ago: “The further advanced dementia becomes, the closer their feet will stay to the ground.” What I mean by this is, people who are living from a dementia-related disease most likely develop an unsteady gait, hardly lifting their...
Checklists:
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Trusted Connections:
Helpful Websites:
LeadingAge
LeadingAge serves as a community partner and connector to solve problems and create new opportunities to better serve an aging America.
The Eden Alternative®
The Eden Alternative® is an international, non-profit 501(c)3 organization dedicated to creating quality of life for Elders and their care partners, wherever they may live.
Teepa Snow
Teepa Snow is one of the leading educators on dementia and the care that accompanies it, in the US and Canada.
The Dementia Action Alliance USA
The Dementia Action Alliance USA is a non-profit national advocacy and education organization of people living with dementia, care partners, friends and dementia specialists committed to creating a better country in which to live with dementia.
Pioneer Network
Pioneer Network supports models where elders live in open, diverse, caring communities. Our aim is nothing less than transforming the culture of aging in America.
G. Allen Power, MD
G. Allen Power, MD is a board certified internist and geriatrician, and newly named Schlegel Chair in Aging and Dementia Innovation at the Schlegel—U. Waterloo Research Institute for Aging in Ontario, Canada.
Books:
Books by Gary Joseph LeBlanc:
Managing Alzheimer’s and Dementia Behaviors
The primary purpose of this Health Care Edition of Managing Alzheimer’s and Dementia Behavior is to assist both “Healthcare Professionals” and “Family Caregivers” alike in providing the best care possible to those living with Alzheimer’s and other dementia-related diseases.
Staying Afloat in a Sea of Forgetfulness: Common Sense Caregiving Expanded Edition
When my father was first diagnosed with Alzheimer’s, I read everything I could get my hands on about the disease. Right off the bat I could tell if it was written by a physician, pharmaceutical company or even a nursing home. When caregivers are looking for help, the last thing they need is medical text so complex they already forgot what they read by the time it’s laid back down. This is what got me started on writing about common sense caregiving, which turned into a weekly column and now into this book. My goal is to make this book as “caregiver friendly” as possible. Sharing my triumphs and hardships from my plus three-thousand day campaign in dealing with the disease of Alzheimer’s and the world of memory-impairment.
The Aftereffects of Caregiving
Throughout the many years that you, as a caregiver attend to the countless needs of your loved one, or ones, you will lose fragments of your life that may take years to recover. You may come crawling out of your caregiving campaign wondering if there’s any of the original “You” left. Is this you? Are you feeling a little lost, fragile, maybe hesitant to move forward in life? This book was written specifically for you! We want to help you find yourself again or at least show you ways to reinvent yourself. We know from personal experience that the aftereffects of caregiving can be catastrophic. Our intent in writing this book is to help you open your front door and step back into the world. There is life still out there waiting for you.
Books by G. Allen Power, MD:
Dementia Beyond Disease: Enhancing Well-Being
“From the internationally acclaimed author of the groundbreaking and award-winning book Dementia Beyond Drugs comes another eye-opening exploration of how to improve the lives of people with dementia and those who care for them. In this revised edition including updated facts, studies, and terminology Dr. G. Allen Power demonstrates how to achieve sustainable success in dementia care by changing the caregiving lens to focus on well-being and the ways in which it can be enhanced in people living with dementia.”
Dementia Beyond Drugs: Changing the Culture of Care
“An experienced geriatrician exposes why our current system of nursing homes and long-term care produces misery in our elders, particularly those with dementia, and foils the efforts of genuinely caring and compassionate staff to provide a better life for them. Through illuminating examples, see how a radically different approach to dementia care reduces the need for harmful psychotropic drugs and transforms how we engage the people living with this debilitating disease.”
Books by Atlanta Author and Geriatric Practitioner Nancy Kriseman:
Meaningful Connections: Positive Ways To Be Together When A Loved One Has Dementia
Meaningful Connections is Nancy’s newest book, which is designed to help caregivers find new ways to engagewith loved ones who have Alzheimer’s or other types of dementia. Suggestions, ideas, and case examples are presented throughout the book. The book includes chapters on how to have positive visits, how to engage with loved ones, as well as information on how to cope with difficult situations and end of life issues. Available locally from Tall Tales Books.
Other Books
Dr. Jennifer Bute was a highly qualified senior doctor in a large clinical practice, whose patients included those with dementia. Then she began to notice symptoms in herself. She was finally given a diagnosis of Young Onset Dementia in 2009. Jennifer believes that her dementia is an opportunity as well as a challenge. When she resigned as a General Practitioner, she resolved to explore what could be done to slow the progress of dementia, and to help people living with it. Inspired by the work of neuroscientist Professor Kawashima that showed significant cognitive recovery in patients with dementia, she adopted the principles of his approach and has produced materials for the ‘Japanese Memory Groups’ that she runs in the dementia inclusive village where she now lives.
The Long Hello: Memory, My Mother, and Me
Since Cathie Borrie delivered her keynote performance at the World Alzheimer’s Day event sponsored by the Community and Access Programs of the Museum of Modern Art, her self-published manuscript has won rapturous praise from noted writers and Alzheimer’s experts alike, from Maya Angelou, Lisa Genova, and Molly Peacock to Dr. Bill Thomas, Jed A. Levine of the Alzheimer’s Association, NYC, and Meryl Comer of the Geoffrey Beene Foundation Alzheimer’s Initiative. Now it is available to the general public for the first time in a trade edition.
You Might be a Caregiver if: You Give yourself to Others then Wonder what Happened to YOU!
Caregivers, perhaps the strongest of personality types, derive much of their personal satisfaction through pleasing Others. As a result, they often lose perspective on how to please themselves! This book will help these amazing individuals to learn about themselves through increased Awareness and Acceptance of who and what they are; and more importantly why they do what they do!
They do say the hardest line to write in a book is the first, in my case it will be the last, as eight years ago i was told i had the Alzheimer’s Type of dementia, only to be told, four years later i had been misdiagnosed, and it wasnt Alzheimer’s, But the Lewy Bodys type dermentia, please read to see WHAT HAPPENED NEXT
Creating Moments of Joy – Jolene Brackey
Jolene Brackey has a vision. A vision that will soon look beyond the challenges of Alzheimer’s disease and focus more of our energy on creating moments of joy. When a person has short-term memory loss, her life is made up of moments. But if you think about it, our memory is made up of moments, too. Available locally from Tall Tales Books.
Learning to Speak Alzheimer’s – Joanne Koenig Coste
More than four million Americans suffer from Alzheimer’s, and as many as twenty million have close relatives or friends with the disease. Revolutionizing the way we perceive and live with Alzheimer’s, Joanne Koenig Coste offers a practical approach to the emotional well-being of both patients and caregivers that emphasizes relating to patients in their own reality. Available locally from Tall Tales Books.
The Validation Breakthrough – Naomi Feil and Vicki de Klerk-Rubin
Validation is a practical way of communicating with and managing problem behavior in older adults with Alzheimer’s-type dementia. It helps reduce stress, enhance dignity, and increase happiness. Since its inception in 1989, Validation has helped thousands of professional and family caregivers improve their relationships with residents and loved ones with dementia. Caregivers who use these techniques validate older adults’ expressed feelings, rather than focusing on disorientation and confusion.
When Caring Takes Courage: Alzheimer’s/Dementia: At A Glance Guide for Family Caregivers – Mara Botonis
Top Tips for Common Care Challenges… From helping your loved one live well with Alzheimer’s/dementia to the secrets of capable caregiving, these easy to implement ideas give you a head start on creating the best possible day. When it comes to Alzheimer’s and dementia care, the only thing predictable about the experience is that it’s unpredictable. The more ideas and approaches you have, the better your chances are you’ll find something that works well for you. Available locally from Tall Tales Books.
Relentless Goodbye – Ginnie Horst Burkholder
Ginnie Horst Burkholder shares from the heart about caring for a spouse who is slowly slipping away to Lewy body dementia (LBD). Burkholder’s memoir reveals how she handles the constant challenges through humor, love, commitment, and faith. At the same time, she does not gloss over the loss, pain, and loneliness on this emotional roller coaster ride that invaded her marriage and family following her husband’s diagnosis. Available locally from Tall Tales Books.
Alzheimer’s From The Inside Out – Richard Taylor
Offers a glimpse into the world of individuals living with Alzheimer’s disease. The author, who was diagnosed at age 58, shares his account of his slow transformation and deterioration. Addresses complexity and emotions surrounding issues such as the loss of independence, unwanted personality shifts, struggle to communicate, and more. Available locally from Tall Tales Books.