COVID-19: What dementia caregivers need to know

Experts from the Alzheimer's Association believe dementia does likely not increase a person's risk for COVID-19, the respiratory illness caused by the novel coronavirus. The pandemic does present unique challenges for the 410,000 New Yorkers living with Alzheimer's, as well as their caregivers.

"Caring for a person living with Alzheimer's disease or another dementia is a full-time job on its own," said Catherine James, Alzheimer's Association, Central New York Chapter's chief executive officer. "COVID-19 and the resulting strategies to flatten the curve have created a new frontier in dementia caregiving."

Efforts to limit contact with others, as recommended by local and federal officials, are intended to prevent the spread of the disease. The Centers for Disease Control and Prevention considers older adults at a higher risk for developing COVID-19. Stay-at-home orders like New York State on Pause have put caregivers on 24-hour duty, as family and friends keep a safe, social distance.

The problem is larger than most people recognize, James said. According to the Alzheimer's Association 2020 Alzheimer's Disease Facts & Figures report, 70 percent of individuals living with Alzheimer's disease reside at home.

"Public health strategies aimed at limiting contact with others are nearly impossible for people living with Alzheimer's and other dementias who rely on family caregivers and others to live their daily lives," James said. "This reality affects these individuals across all settings, including home, adult day services, residential and assisted living facilities and nursing homes."

To help family caregivers navigate the complex COVID-19 environment, the Alzheimer's Association is offering additional guidance to families, including:

Help people living with Alzheimer's practice safe hygiene. People living with Alzheimer's and other dementias may forget to wash their hands or follow other precautions to ensure safe hygiene. Caregivers are encouraged to be extra vigilant in helping individuals practice safe hygiene.

Play gatekeeper with outside caregivers and guests. The majority of individuals living with Alzheimer's and other dementias are over age 65, putting them at the highest risk for complications from COVID-19. This is especially true if a person living with dementia has other chronic conditions of the heart and lungs or diabetes. It's critical that family caregivers carefully monitor who is coming into the home and to ensure all who enter are healthy.

Monitor sudden or sustained changes in behavior. People living with Alzheimer's and other dementias may not be able to communicate if they are feeling bad and showing early symptoms of illness. It is important that caregivers monitor family members closely and respond quickly to any signs of distress, discomfort, or increased confusion. These signs do not necessarily indicate a serious condition like COVID-19, but it's important that caregivers be diligent in investigating what is causing any sudden or sustained change in behavior. Even when people living with Alzhemer's cannot communicate verbally, their actions may be sending a message.

Be calm and create a nurturing environment. The current COVID-19 pandemic is creating added anxiety for everyone. Do your best to remain calm, particularly in your interactions with family members living with dementia. Oftentimes, these individuals will take their cues from the people who surround them. Creating a calm environment will help individuals living with dementia feel safe and protected.

Anticipate and prepare that current care and support options may change. As public health containment strategies for COVID-19 escalate during the next several weeks, it is important for families to anticipate that less help and support may be available. It is also important to discuss alternative plans for care management if the primary caregiver should become sick.

Many primary caregivers are not good about asking for help even as care responsibilities escalate. It's important for family members and friends to be proactive during the current crisis in asking caregivers how they can help.

Ask residential care facilities about its communication policies. In order to protect the health of their residents, many facilities are restricting access to outside visitors, so it's important to ask how you can get updates on your family member's health and how you can communicate with loved ones during the current crisis. Ask to see if phone calls, video chats or even emails, will be offered and how best to coordinate. 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.

Keep prescriptions filled. Caregivers may also want to ask their pharmacist or doctor about filling prescriptions for a greater number of days to reduce trips to the pharmacy.

For more information about caregiving during the COVID-19 pandemic, visit alz.org/covid19 or call its free 24/7 Helpline at 800-272-3900.

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