Coronavirus (COVID-19): Tips for Dementia Caregivers

Most likely, dementia does not increase risk for COVID-19, the respiratory illness caused by the new coronavirus, just like dementia does not increase risk for flu. However, dementia-related behaviors, increased age and common health conditions that often accompany dementia may increase risk.

For example, people with Alzheimer's disease and all other dementia may forget to wash their hands or take other recommended precautions to prevent illness. In addition, diseases like COVID-19 and the flu may worsen cognitive impairment due to dementia.

As communities and care services begin reopening, it is important for caregivers to consider the risks and take additional safety precautions for people living with dementia. 

Tips for dementia caregivers at home

Caregivers of individuals living with Alzheimer's and all other dementia should follow guidelines from the Centers for Disease Control (CDC), and consider the following tips:

• 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. 

Tips for supporting persons with dementia who receive home-based services

If you currently receive or plan to receive services from a paid health care professional in your home:

• Contact the home health care provider and ask them to explain their protocols to reduce the spread of COVID-19.
• Check the home health care professional’s temperature before they enter your home. Anyone with a temperature over 100.4° F should be excluded from providing care.
• Ask the health care professional if they have been exposed to anyone who has tested positive and if so, do not allow them into your home.
• Ensure that the health care professional washes their hands upon arrival and regularly throughout their time in your home.
• Ask the health care professional to wear a mask.
• Be aware that bringing anyone into your home increases the risk of spreading COVID-19, even if CDC guidance is followed.

Tips for supporting persons with dementia who live in long-term care or residential care settings

The CDC has provided guidance on infection control and prevention of COVID-19 in nursing homes. This guidance is for the health and safety of residents. Precautions may vary based on local situations. 

• Check with the facility regarding their procedures for managing COVID-19 risk. Ensure they have your emergency contact information and the information of another family member or friend as a backup.
• Do not visit your family member if you have any signs or symptoms of illness. 
• Depending on the situation in your local area, facilities may limit or not allow visitors. This is to protect the residents but it can be difficult if you are unable to see your family member. 
• If visitation is not allowed, ask the facility how you can have contact with your family member. Options include telephone calls, video chats or even emails to check in. 
• If your family member is unable to engage in calls or video chats, ask the facility how you can keep in touch with facility staff in order to get updates.​

  Improving the response to COVID-19 in long-term care settings

  The Alzheimer's Association is urging state and federal lawmakers to implement new policy solutions to address the issues impacting long-term care during the pandemic. The only way to end social isolation is to ensure every residential care community has access to rapid testing for all residents, staff and visitors. Join the Alzheimer’s Association and urge state and federal policymakers to implement new policy solutions to address the issues impacting these communities during the pandemic.

  Learn More

Considerations as long-term care and community-based care services reopen

If you or someone you care for typically rely on home or community-based services, you may have experienced a disruption due to restrictions caused by COVID-19. As communities begin phased reopenings and these services become available again, it is critical to weigh the risks associated with restarting these care options.

Long-term care settings

The Alzheimer’s Association believes visitors are only appropriate at a long-term care community when that community has the capability to employ rapid testing for all staff, visitors and residents, and adequate and consistent access to personal protective equipment for all staff. The communal nature of these settings combined with the older age and underlying chronic conditions of most residents make the people living there extremely vulnerable to COVID-19.

Many long-term care communities have closed their doors to visitors due to the COVID-19 pandemic and heightened risks to residents. This has been an especially difficult time for caregivers and families who have been unable to see their loved ones in person. There are always risks with in-person visits, but as long-term care communities begin to allow visitors during the ongoing pandemic, there are additional steps you must take in order to reduce the risk of spreading COVID-19.

• Postpone your visit if you are exhibiting any symptoms of COVID-19, such as fever, cough or difficulty breathing. 
• Consider an outdoor visit to minimize risk of transmission, when rapid testing is not available. Outdoor visits should still include social distancing, wearing of masks and no physical contact. Ask the care community if this is a process they are supporting.  
• Consider alternative ways to connect when possible, such as through phone or video calls. 
• Before your visit, check with the care community on its visitation policies.
• Bring your own face mask, put it on before arriving at the facility and wear it at all times.
• Maintain social distancing for the entirety of your visit. 
• Wash your hands regularly and avoid touching your face.
• Inform staff immediately if you develop a fever or symptoms consistent with COVID-19 within 14 days of your visit.

In-home care services

Even when precautions are taken, any outside person entering your home increases the risk of spreading COVID-19. The risk of exposure is greater for individuals living with dementia, who tend to be older and have underlying health conditions.

To help reduce the risk associated with in-home care, it is essential that you require care providers to:

• Wear a face mask or cloth face covering. (Recommended personal protective equipment should be worn when personal care and medical services are being provided.)
• Inform you if they are experiencing any fever symptoms consistent with COVID-19 or if they have been exposed to anyone with the virus. If so, they should not visit.  
• Wash their hands with soap and water for at least 20 seconds upon arrival and frequently throughout the day — especially after using the bathroom, before meals, and after coughing or sneezing. 
• Avoid eating at the same time as the person living with dementia.

Out-of-home or community-based care

At this time, out-of-home care options, such as adult day programs — which are communal by nature — aren’t safe for people living with dementia. People with dementia may have trouble following social distancing guidance, and are extremely vulnerable to COVID-19 due to age and other medical conditions. Adult day care programs face significant challenges because attendees are cared for in close, group settings.

You could consider programs that offer virtual activities to encourage social engagement. Some services also provide meal delivery.

Considerations if your family member’s residential facility has an incidence of COVID-19

It is important to note that there are no simple answers and, at this time, there is no way to completely eliminate the risk of your family member being exposed to COVID-19. However, there are some questions to consider if you are faced with this situation. The answers to these questions can help you make the best decision for your family.

Keeping the person in the facility

• Ask the facility about their quarantine procedures. What is your level of confidence that CDC guidelines are being followed?
• How many people in the facility have been impacted by COVID-19? Are those affected staff, residents or both?
• Is your family member able to follow social distancing procedures (with or without help)?
  • In some cases, the person may not be able to walk or move about on their own. This could help maintain social distancing.
• Does the facility have and use personal protective equipment?
• How many staff members interact with your family member on a regular basis? Is the facility able to limit the number of staff who work with your family member?
• Is the facility adequately staffed to provide the level of care your family member requires?

Moving a person home

• What level of care does the person need on a day-to-day basis? (For example, is the person able to bathe and dress him- or herself? Are they continent? Are they ambulatory or do they need assistance moving?)
  • Is your family able to provide the level of care needed?
  • While limiting the number of people who have contact with the individual is important, it is also important to assess the number of people needed to provide adequate care.
• Does anyone in your family have COVID-19 currently?
• Are there individuals in the home who work outside of the home? If so, the risk for exposure is increased.
• Is it possible to hire home care workers? This option comes with its own level of risk. 

Moving to another facility

• Moving a family member to another facility may be an option. However, there is no way to know whether the new facility will remain free of COVID-19 cases.
• Is the facility accepting new residents?
  • Some facilities are not accepting new residents, depending on location.
• Have there been COVID-19 cases in the new facility?

Tips for supporting persons living with dementia who are in the hospital

While many hospitals are restricting or limiting visitors to help curb the spread of COVID-19 and protect patients and staff, there are still ways to support the person living with dementia during their hospitalization. CDC guidance allows care partners of persons with dementia to visit if they are essential to the person’s physical or emotional well-being.

If visiting in person

• Be sure to familiarize yourself with the safety requirements of the hospital beforehand.
• Bring your own face mask and put it on before arriving at the facility.
• Wash your hands regularly and avoid touching your face.
• Limit your visit to the room of the person living with dementia. (Avoid going to other locations in the hospital.)

If you are unable to visit in person

• Communicate with the person through phone or video calls.
• Give your contact information to the attending nurse and ask for it to be written on the white board in the person’s room. Find out what kind of communication will be possible and how you can expect to receive updates.

​Staying healthy

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 your hands with soap and water if your hands are visibly dirty.

Tips for caregivers and people living with Alzheimer’s seeking COVID-19 testing

As a caregiver or a person living with dementia, you may be concerned with the risks of going out in public to get tested for COVID-19, or to enter a doctor’s office or another testing environment. The CDC offers guidance and information on COVID-19 testing:

• There are two types of tests available: a viral test, which tells you if you have the virus currently; and an antibody test, which tells you if you were infected in the past. 
• If you think you have COVID-19, call your health care provider and arrange a telehealth appointment. Your provider can help determine if you need to be tested. 
• Your health care provider may be able to test you directly, but depending on their supply of tests, you may need to seek another source. 
• Visit your local or state health department website to find the latest information and locations for testing in your area.  
• You may want to consider drive-through testing, which allows you to remain in your car while being tested. Many state health departments are coordinating with community centers or other public locations to provide drive-through testing. Other companies, such as CVS, are offering free drive-through testing at selected locations. 
  • Call ahead and see if you need to make an appointment. 
  • Bring a doctor’s order, your ID and an insurance card with you to the testing site. 
  • Leave your car windows up until otherwise instructed. 
  • Stay home while you await the results of your test. 
• The U.S. Food and Drug Administration approved two versions of an at-home testing kit. However, the sample you collect from your saliva or nasal passage will still need to be sent to a laboratory. Talk to your health care provider about the efficiency and availability of at-home testing and if it’s right for you.