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We provide you with articles on brain science, timely topics, and healthy living for those affected by neurologic challenges or seeking better brain health.  

COVID-19, Caregiving
By Paul Wynn

Stay Connected to Family Members with Dementia During COVID-19

The COVID-19 pandemic has made caring for people with dementia especially challenging. Whether you take care of a family member at home or connect with relatives in a nursing home, these tips may ease the burden.

Eight years ago, when Denise Goerke began exhibiting unusual behavior—not being able to follow simple driving directions and repeating tasks at work—she and her husband, Dan, never suspected Alzheimer's disease. After all, Denise was only 53. When her symptoms persisted, Denise and Dan sought the advice of a neurologist, who confirmed a diagnosis of young-onset Alzheimer's disease after a thorough examination and medical history. Four years later, Denise's condition had progressed to the point where Dan had to move her to a memory care facility. Over the past four years, he visited her almost every other day. They would sit together and hold hands, and he would share news and stories about their children and grandchildren. "She wouldn't say much, but just being together was comforting to both of us."

Those personal visits came to a sudden halt when the COVID-19 pandemic arrived. Federal agencies and state governments issued stay-at-home directives, and nursing facilities began prohibiting visitors and introducing other safety measures such as postponing trips, restricting communal dining and group activities, and suspending specialized rehabilitative services.

Denise and Dan Goerke
Denise and Dan Goerke. Photo Courtesy of Waga/Fox 5 Atlanta

Since then, Dan, 61, has found new ways to connect with Denise. A health aide who works at the center helps coordinate video calls using a smartphone. He and the aide have also arranged visual visits: At an appointed time, Dan stands outside a large picture window on the first floor of the facility while the aide brings Denise to the inside of the window. "Sometimes she'll stretch out her arm to try to hold my hand, and that upsets me," he says. Despite the glass separating them, Dan still talks to her as if they were in the same room. "I often show pictures of our grandchildren. A few times our son and granddaughter came to see her at the window, and that always brightens her smile."

Like the Goerkes, many people who have family members with dementia are facing challenges during the pandemic and creating new ways to connect and stay informed. "Although families across the country cannot visit their relatives in long-term care centers, they can still be there for them," says Charles Fuschillo Jr., president and chief executive officer of the Alzheimer's Foundation of America, one of the organizations (the Alzheimer's Association is another) that offer tips and advice for caregivers and patients.

To help families navigate this new terrain, dementia and caregiver experts offer these strategies.

Contact the facility. If your relative is in an assisted living, memory care, or skilled nursing facility, ask the staff about any policy changes related to the COVID-19 outbreak. Make sure the staff has current contact information for you and any backup people for emergencies. Request regular updates about the number of COVID-19 cases among residents and staff, how the facility is addressing these cases, and any strategies in place to minimize the risk of exposure or infection. Find out how often staff are monitoring patients, what the staff-to-patient ratio is during the pandemic, and the facility's policies regarding use of face masks and gloves by staff when they interact with residents.

Encourage safe behaviors. While dementia doesn't increase the risk for COVID-19, certain dementia-related behaviors like forgetting to wash hands or stay six feet from other people may increase risk, says Beau M. Ances, MD, PhD, FAAN, endowed professor of neurology at Washington University in St. Louis. To minimize that risk, check on whether the staff can follow and teach such procedures with your loved one at the facility.

Sidestep stress. People with dementia may be confused or agitated about new rules and visitor restrictions, says Beth Logan, a hospice social worker and therapist in Walnut Creek, CA, who specializes in dementia care. It may be upsetting to them to see health care workers wearing masks and gloves. Caregivers can ask staff at the facility to be on the alert for changes in their family member's behavior that might indicate stress and to try to keep him or her from getting alarmed by the crisis.

Provide appropriate information. If your loved one asks questions about what's happening, explain that a virus is going around and you don't want him or her to catch it, advises Logan. "Whatever you say, you want to let them know they are safe and there's nothing to worry about. Then try to distract them by talking about or doing something more pleasant."

Stay connected. Feelings of loneliness and isolation are often more acute for people with Alzheimer's disease, and those feelings can be exacerbated if they are unable to have visitors. Regular communication is vital, says Sudha Seshadri, MD, FAAN, director of the Glenn Biggs Institute at the University of Texas Health Sciences Center in San Antonio. She encourages families to stay in touch through regular telephone calls, video chats, email, or even old-fashioned letter writing. Some families use senior-friendly tablets such as GrandPad that come preloaded with video-calling software and have straightforward interfaces. Other smart devices, like the Amazon Echo Show and Facebook's Portal, offer easy video-calling capabilities. Dr. Seshadri recommends supplementing phone and video calls with cards or care packages filled with photos, snacks, trinkets, and drawings from grandchildren. "People with mild dementia may enjoy simple puzzles or card games or even a CD with their favorite music or an article of clothing they find comforting," says Dr. Seshadri. "The more familiar and personal the items, the more your loved one will feel connected." She also suggests ways to make communicating easier. "Call at the time of day your relative is most alert, and choose topics of conversation that bring joy," says Dr. Seshadri.

When communicating with patients with dementia, refrain from challenging them to remember or to speak in an organized way or even to converse in back-and-forth exchanges. "If your intention is to connect, limit the conversation to yes and no answers," Logan says. You also can communicate through touch and smiles. Patience and good listening skills become more important and words less so. Try not to interrupt, and don't take angry outbursts personally. Speak slowly and clearly and make eye contact, advises Dr. Ances. "If your loved one isn't listening or taking direction, change the topic," he says.

Tips for At-Home Care

If you're caring for a relative with dementia in your own home, follow these precautions to keep them safe and healthy.

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All Icons by Ayub Irawan from the Noun Project

Teach good hygiene. To help your relative remember to wash his or her hands, put up signs about washing hands in the bathroom and kitchen, says Beth Kallmyer, MSW, vice president of care and support at the Alzheimer's Association in New York. "For those with more progressive disease, help them wash their hands or develop a handwashing schedule."

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Dial down the stress. Reading or watching alarming or upsetting news reports is distressing for anyone and can be more so for people with dementia. Avoid or limit news consumption while your relative is around. That's what Annette Adams-Brown—who lives with her 87-year-old mother, Bertha Adams, in a senior community in Syracuse, NY—does for her mother, who is in the early stages of Alzheimer's disease. Adams-Brown makes sure they tune in to her mom's favorite game shows.

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Create a safe environment. Now more than ever, caregivers need to keep their relatives with dementia safe from falls and injuries to avoid having to go to the hospital or emergency department. That means removing tripping hazards like rugs, extension cords, and excessive clutter; making sure hallways and rooms are well lit; having chairs with armrests that can be used for support when shifting from sitting to standing; and installing grab bars in the bathroom. To eliminate the likelihood of exposure to the virus at grocery stores or pharmacies, Adams-Brown orders all medications and food online. If she has to go out, she wears a mask and gloves; when she returns, she removes and disinfects her shoes and washes her hands and face. She also cleans surfaces and other frequently touched areas, including countertops, doorknobs, and cupboard handles.

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Stick to a routine. Establishing regular times for meals and going to bed can reduce agitation and confusion in your loved one, says Beth Logan, a hospice social worker and therapist in Walnut Creek, CA, who specializes in dementia care. Try to schedule activities for him or her throughout the day if possible, whether that's doing simple exercises like chair yoga or listening to soothing music.

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Use telehealth. If your relative must see a doctor, arrange a virtual visit. For your visit, it can be a help to have a digital thermometer, a home blood pressure cuff, and a pulse oximeter (which monitors the amount of oxygen in the blood). Pulse oximeters may provide an early warning sign of breathing problems associated with COVID-19. "These devices are easy to use and reliable in detecting low oxygen levels and even increased heart rates," says Allison Reiss, MD, associate professor at NYU Long Island School of Medicine and board member at the Alzheimer's Foundation of America. (For more information about telemedicine, read "Making the Most of Virtual Doctor Visits.")

If you see any changes in your relative's physical or mental state, contact his or her physician first before going to an emergency department, which is likely to be filled with COVID-19 patients. "The doctor might be able to help your loved one without a visit to the hospital," says Kallmyer.

Dementia Resources