Questions From Families Facing Alzheimer’s During the Pandemic: What Your Family Needs to Know

While COVID-19 continues to affect the health and well-being of millions around the world, it presents unique challenges for more than 5 million Americans living with Alzheimer’s and the more than 16 million caregivers who provide them with unpaid care.

We sat down with our own Beth Kallmyer, Vice President, Care and Support, to tackle the topics which most affect caregivers and the ones they love, along with frequently asked questions asked through our free 24/7 Helpline. 

Beth, we know that dementia doesn’t increase risk for COVID-19. However, those living with Alzheimer's and dementia may have an increased risk due to other behaviors and conditions. What are these primary risk factors?
A variety of factors come into play when it comes to risk, primarily dementia-related behaviors, increased age and other chronic health conditions. Families should be aware that the elderly, especially those with preexisting chronic conditions — such as heart disease, respiratory issues or diabetes — are at the highest risk for complications from COVID-19.

We know that people living with dementia are often underdiagnosed for viruses like the flu, and viruses like COVID-19 may also worsen cognitive impairment due to dementia. If your loved one has flu-like symptoms, take the person’s temperature. Do not go directly to an emergency room unless the person is having difficulty breathing paired with a very high fever. Your doctor may be able to treat your loved one without a hospital visit.

What are the crucial hygiene tips for those providing care to people living with Alzheimer's and other dementia? 
Caregivers and loved ones in the home will likely need to assist people living with dementia practice safe hygiene. As people with dementia may fail to wash their hands or follow other precautions to ensure safe hygiene, it is the caregivers that must be vigilant. 

Some tactics for keeping these habits in place include demonstrating proper, thorough hand-washing with the person affected; placing signs in and near the bathroom indicating that it is important for people to wash their hands with soap; and keeping alcohol-based hand sanitizer in the home as a hand-washing alternative. You may also consider a hand-washing schedule.

The Alzheimer’s Association encourages caregivers to follow guidance from the Centers for Disease Control (CDC) regarding COVID-19. This includes avoiding touching your eyes, nose and mouth, avoiding contact with people who are ill, covering coughing or sneezing with a tissue, disinfecting frequently touched objects in the home and washing your hands consistently.
 
For people with Alzheimer’s and dementia living at home, what advice do you recommend to limit visitors for the health of these caregivers and their loved ones?
As the majority of people living with Alzheimer’s are over age 65, this puts this population at the highest risk for complications from COVID-19, especially if a person with dementia has other chronic conditions. Caregivers should be proactive in protecting their loved ones by preventing contact with anyone outside of the immediate household, except in cases where absolutely essential. Know that it is okay to say “no” during this time of crisis to protect everyone involved. 

If your loved one requires in-home care, outside caregivers should be screened regarding their current health to ensure they are not experiencing any recent symptoms or bouts of illness. Don’t be afraid to ask; you are protecting yourself and your loved one.

What suggestions do you have for creating a nurturing environment for people living with dementia during this time of heightened anxiety?
It’s important to keep calm and reassuring in your interactions with family members living with dementia. Creating a safe and secure environment is one vital step to ensure your loved ones feel protected.

Depending on where your loved one is in the course of the disease, put the current situation in a context that they can understand. If they are unable to, don't overexplain. You may tell the person that by staying inside, you will be safe together at home.

If a home health care worker or other caregivers are wearing masks for added protection, communicate this to the person with the disease in order to alleviate any fear or anxiety this change may cause. Explain that this temporary measure is in place for everyone's safety.

If someone sees sudden or sustained changes in the behavior of their loved one, what should they do?
It's important that caregivers monitor their loved ones affected by Alzheimer's and respond quickly to any signs of distress, discomfort, or increased confusion. People living with Alzheimer’s and other dementias may not be able to communicate how they are feeling. 

While changes in the person don’t necessarily indicate a condition like COVID-19, it’s important that caregivers be diligent. Investigate what is causing the behavior. When someone cannot communicate verbally, their actions may be sending a message. Stay alert and aware and contact your health provider if you see any sudden changes in behavior.
 

Assisted Living Facilities and Nursing Homes

In order to protect the health of their residents, facilities are restricting access to outside visitors. What questions should family members be asking these facilities?
It’s important to ask how you can get updates on your family member’s health and how you can communicate with them during this pandemic. Ask what options are available, whether that is communication over the phone or by computer video chat. Clarify whether phone calls, video chats or the ability to send emails is possible and how best to coordinate with the staff at your loved one’s living facility.

If your family member is unable to engage with you through those mediums, be proactive. Ask the facility how you can keep in touch with its staff in order to get updates about your loved one to ease your own concerns. 

How should I tell my loved one why I cannot visit their facility?
Be sure to explain any changes to normal visiting patterns in a way that the person with dementia or Alzheimer’s can understand. For example, some facilities may allow a loved one to stand outside a window while making a phone call to their loved one. While these different and new ways of communication may be difficult to explain or adjust to, it’s worth trying out if that’s an option for your family.

Communicating about these changes may cause anxiety in the person with dementia, so if you are unable to visit or have a new way of reaching out to your loved one, let the person know, and set up a plan. However you are able to connect, communicating ahead will help the person with dementia grow accustomed to any changes to their routine during this crisis. 

You should be prepared to repeat your explanation over time, so be patient and remain calm. Although these changes can be difficult for you, loved ones with dementia often take cues from the people around them, so reassure them that while the changes are new and different for everyone involved, they are only temporary. The reasons why you can’t visit will be secondary and can be explained simply.

Caregiving at Home

Many people help primary caregivers take on chores such as cooking, cleaning, or helping bathe their loved one. Given shelter-in-place and social distancing orders across the country, what tips would you give to those hesitant to enter a family’s home in fear they could be bringing illness into the home?

These are extraordinary times. Not being able to see someone you love or not feeling comfortable going into their home is a current reality of many families. We recommend following your local state guidelines during this time.

We know these necessary restrictions add to what is already a challenging situation for families. Our free 24/7 Helpline is available whenever you need us. Our staff can help talk through ways to cope and how to manage changes to routine during these trying times.

If it is essential that someone enter the home, ask that they follow CDC guidelines and wear a protective mask. 

How can caregivers bring comfort to people with Alzheimer’s during this time, and how can friends and family support primary caregivers? 
We are all living through difficult times; that is certain. But when it comes to day-to-day care for those with dementia, it is best to keep a sense of normalcy. 

As a caregiver, continue to do the things you typically do: play music, sing, make art, garden at home, look through photo albums. Engage with the person with the disease as you normally would.

Friends and family may not be able to visit the person with the disease or their caregiver, but they can send greeting cards, flowers, a home-cooked meal or arrange a food delivery. Take the time to make a phone call or send a note: whatever you are able to do to let someone know that they are not alone. Anything you are able to do would be appreciated by the caregivers who are facing this crisis at home.

 

You are not alone. We are here for you.

The Alzheimer's Association is here to help families take the necessary measures to prepare for and cope with extraordinary circumstances. For more information, visit our online COVID-19 Help Center or call our free 24/7 Helpline at 800.272.3900. 

Professionals looking for new guidelines to help ensure the delivery of high-quality care for people living with Alzheimer’s and other dementia in long-term & community-based care settings during the COVID-19 crisis can learn more here.
 

TIPS FOR CAREGIVERS DURING COVID-19:

• Keep Prescriptions Filled. Caregivers may ask their pharmacist or doctor about filling prescriptions for a greater number of days to reduce trips to the pharmacy.
• Call Your Health Provider. If you or the person you are caring for has regular doctor’s appointments to manage dementia or other health conditions, call your health care provider to inquire about a telehealth appointment. Medicare has recently expanded telehealth benefits to allow seniors to access health care from the safety of their homes during this crisis.
• Stay in Contact with Your Loved One’s Team. Facilities should be sanitizing common areas and rooms. Ask about what other precautions and tactics are being used to protect patients of residential and assisted living facilities and nursing homes. 
• Caregivers: Take Care of Yourself. Caregiver health is vital during these difficult times. Caregivers with a loved one living in a facility must recognize that they are not abandoning someone who may be quarantined; they are simply taking the necessary steps to help keep their family member safe and healthy. Find ways to ensure your own health is at its best.