Support for family caregivers during COVID-19 (pdf from Arch National Respite Network)
For families, friends and care providers of individuals with Alzheimer's disease and similar illnesses
The changes we’re experiencing due to the COVID-19 outbreak are hard for everyone, but for people with Alzheimer's disease and similar illnesses, the suddenness and severity of these changes in daily life can be extremely stressful. The loss of freedom and daily routine can feel like punishment. They don’t feel sick. Everyone else looks fine. Why is everything shutting down?
Caregivers of individuals living with Alzheimer's and all other dementia should follow guidelines from the
Centers for Disease Control (CDC). The care you provide is always vital to the quality of life and well-being of the person for whom you provide care. The Coronavirus epidemic places extra burdens on you in providing that care. Here are some guidelines to individualize according to their age and needs.
For people living with dementia, increased confusion is often the first symptom of any illness. If a person living with dementia shows rapidly increased confusion, contact your health care provider for advice. Unless the person is having difficulty breathing or a very high fever, it is recommended that you call your health care provider instead of going directly to an emergency room. Your doctor may be able to treat the person without a visit to the hospital.
People living with dementia may need extra and/or written reminders and support to remember important hygienic practices from one day to the next.
Consider placing signs in the bathroom and elsewhere to remind people with dementia to wash their hands with soap for 20 seconds.
Demonstrate thorough hand-washing.
Alcohol-based hand sanitizer with at least 60% alcohol can be a quick alternative to hand-washing if the person with dementia cannot get to a sink or wash his/her hands easily.
Ask your pharmacist or doctor about filling prescriptions for a greater number of days to reduce trips to the pharmacy.
Think ahead and make alternative plans for the person with dementia should adult day care, respite, etc. be modified or cancelled in response to COVID-19.
Think ahead and make alternative plans for care management if the primary caregiver should become sick.
Pay attention to flu or pneumonia-like symptoms in yourself and others and report them to a medical professional immediately. Follow current
guidance and instruction from the CDC regarding COVID-19. Tips to keep yourself and your loved ones healthy include:
Avoid close contact with people who are sick.
Avoid touching your eyes, nose and mouth.
Stay home when you are sick; work from home.
If you or the person you are caring for have regular doctor’s appointments to manage dementia or other health conditions, call your health care provider to inquire about a telehealth appointment. As a result of the COVID-19 pandemic, Medicare has recently expanded telehealth benefits to allow seniors to access health care from the safety of their homes.
Cover your cough or sneeze with a tissue, then throw the tissue in the trash.
Clean and disinfect frequently touched objects and surfaces using a regular household cleaning spray or wipe.
Wash your hands often with soap and water for at least 20 seconds, especially after going to the bathroom; before eating; and after blowing your nose, coughing or sneezing.
If soap and water are not readily available, use an alcohol-based hand sanitizer with at least 60% alcohol.
Always wash hands with soap and water if your hands are visibly dirty.
Use Facts and Plain Language
Explain that the virus is new. And because it’s new, there is no vaccine for it, and people can pass it on to others without even knowing it.
If they want to know more about the virus, explain that it affects people’s lungs and makes it hard to breathe, and that people can pass it to others without feeling sick themselves.
Explain that schools and businesses are closed, and events are canceled, so that we can keep from spreading this virus and making too many people sick at the same time.
Reinforce that it’s up to all of us to do what we can to make sure we don’t get each other sick. Enlist their help to slow the spread of the virus by staying home, washing hands and surfaces that are touched a lot, and keeping a distance from people if they go outside.
Life may be different for many months, we are all in this together, and we will all keep looking out for each other. Family, friends, neighbors, services, and helpful people are everywhere.
Make sure you have enough of your loved one’s medical supplies and medications for an extended period.
Help Create a New Routine
No school or work. Activities canceled. Taking action can help offset feelings of helplessness, frustration, depression and anger.
Provide support to create a new routine together. Make it visible. Fill it with things to do that they choose and have control over.
Add new activities that you learn about online as more opportunities spring up.
Support connections with friends and family through technology, such as FaceTime, Google Hangouts, Facebook, Zoom, texting and phone calls. Find ways to reinforce that relationships with other people have not changed, even if the connection looks different for now.
More Home Engagement Opportunities
If you have relied on outings as a way to keep your person pleasantly occupied during the day, then removing them from the schedule means you have to fill in those times with other engaging tasks and activities. So, plan for that. Consider the kinds of at-home activities that seem to please and engage your person. Are there ways to repeat such activities over the course of a day? Are there similar kinds of activities you might try (if the person enjoys helping with cooking, might s/he enjoy helping with the laundry)? Try new things out and add those you see to be working well to your toolbox.
Pay Attention to Your Own Isolation
If following the “rules” means you are finding yourself more homebound, be sure to check to see how this is making you feel. Perhaps take some preventive steps before you begin to feel a touch of cabin fever or a sense of being isolated. Make deliberate arrangements with family, neighbors, and friends to have regular contact. Phone and FaceTime calls can be helpful.
Know Your Own Risk Factors
Do you have a chronic condition? Are you immunosuppressed? Many caregivers themselves have health issues, so don’t put yourself in unnecessary danger.
Help from Outside the Home
If you have someone coming into the home to help care for your person, then the general rules should apply to that person as well. The person should observe the kinds of hand washing and sanitizing you are observing, be urged to follow good self-care procedures, and monitor him/herself for symptoms of Covid-19 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’s 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 would 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?
Monitor the health of your loved one, and keep in touch with their medical team
Many health care plans and practices have their own guidelines for how and when they should be contacted about possible COVID-19 exposure or symptoms. Call your loved one’s primary care doctor and ask how they want you to proceed.
Call ahead before going to some medical appointments
To minimize the risk of exposure, many healthcare facilities are handling some appointments with telemedicine. Medicare and other insurance providers have expanded coverage to now include telemedicine. Call your loved one’s healthcare provider in advance of the appointment to see if the appointment can be held via telemedicine.
Be aware of any changes to visitation policies
Many hospitals and emergency rooms no longer allow visitors, including family caregivers, in treatment areas or patient rooms. In a situation where you are not allowed to be with your loved one in the hospital or emergency room, discuss a strategy with staff that will allow you to get updates on your loved one. Many skilled nursing and assisted living facilities have made changes to their visitation policies. Check to see if outside visitors are allowed before making a trip.
Only go to the Emergency Room for emergencies
If you suspect that you or your loved one are experiencing COVID-19 symptoms, call your doctor.
Prepare for a possible quarantine
If your loved one has been exposed to COVID-19 or has developed symptoms and/or tested positive for the virus, you will need to manage a 14-day quarantine.
Can your loved one stay in a specific room and away from other people in your home? They should also use a separate bathroom, if available.
Avoid sharing personal items such as: dishes, towels, and bedding
Clean all surfaces that are touched often. These include: counters, tabletops, and doorknobs. Use household cleaning sprays or wipes according to the label instructions.
Sources: Alzheimer's Association,
Caregiver Action Network, Emory University Goizueta Alzheimer's Disease Center, Washington State Council on Developmental Disabilities and
Arch National Respite Network.