Dementia Caregivers Are Struggling During the Coronavirus Pandemic—Here's What it's Like
It starts out like a coronavirus pandemic story you’ve heard before: a small business owner, trying to get a loan through the CARES Act, is on hold with the Small Business Association for what feels like an eternity. Only this particular story has a twist, because the caller’s 90-year-old mother, who has dementia, is also waiting—alone and naked on a toilet bowl, ready for her daughter to give her a bath.
“I was really stressed,” JJ Flentke, a 50-year-old physical therapist who owns a clinic in Vancouver, Washington, tells Health of the incident. “I’m outside walking around, I’m caller number eighteen hundred—and suddenly, on the other end of the phone, is my mother. I’m like, Oh crap. I told her I’d give her a bath. I forgot...she remembered! I gotta tell you: I can’t count on that happening, but it does when I least expect it.”
More than 5 million Americans have Alzheimer's disease, the most common form of dementia, and 16 million Americans provide unpaid care for people with Alzheimer's. For these caregivers, who are typically family members (and usually female), the current crisis has introduced new challenges. Many, like Flentke, now find themselves working from home, caring for out-of-school children, and tending to a sick parent or spouse—all while being isolated from extended family, friends, and sanity-saving resources like in-home companion care and adult recreation centers. (Flentke temporarily suspended her use of Home Instead, a caregiving service, to reduce the risk of spreading the virus.)
“There’s so much on the news about parents staying home with the kids and what that’s like, but I haven’t heard anything about, ‘Well, what’s it like to take care of somebody with dementia and try to work from home?’” Sharon O’Connor, director of the adult day health program at IONA, a social services agency in Washington, DC, tells Health.
Programs like O’Connor’s give caregivers a much-needed break to work, run errands, or stay on top of their own mental and physical health. Without them, feelings of isolation and depression, which are already common among caregivers, are often amplified. “One caregiver said she feels like a caged tiger,” says O’Connor. “She can’t leave her loved one, and so she has this feeling of being trapped.”
Bonnie Wattles, executive director of HFC, a nonprofit that provides caregiving relief grants to families of people with Alzheimer’s, has come across similar anecdotes. “I heard from one of our hospital partners that there was a family caregiver who was having to repeat details about the pandemic over and over, because the Alzheimer’s patient didn’t remember,” she tells Health. So not only was that caregiver providing emotional support to her loved one, she was also revisiting the pandemic multiple times a day herself.
“When you have someone with cognitive impairment, they might not be able to keep it in the front of their mind that this is what’s going on,” Beth Kallmyer, vice president of care and support for the Alzheimer’s Association, tells Health. “And so then they keep asking, ‘Why can’t I do this? Why is this different?’ Unfortunately, that can create a spiraling effect, because when you get asked the same question multiple times a day as the caregiver, that can be frustrating.”
People with dementia are not at greater risk of contracting the coronavirus (although they tend to be older and therefore more susceptible), but they are more affected than the average person by the everyday sacrifices the circumstances have demanded. “People with dementia do very well when they have a regular routine,” says O’Connor, “and when their routine is disrupted, that often has an effect on their behavior.”
Linda H., a paid companion with Right at Home, has noticed a considerable difference in her 83-year-old client’s demeanor since the onset of the pandemic. “The agitation has increased two, three times,” she tells Health. “She didn’t used to pace; now she paces.”
Before COVID-19, Linda and her client might start their day with a walk through the local mall or in their city park in Fort Collins, Colorado. “Then we’d go to a restaurant, which she really enjoyed, and have lunch before we went back to the house,” says Linda. “Now, of course, restaurants are closed, the mall is closed.” There’s also more chaos in the house: her client’s son-in-law is telecommuting and her granddaughter is home from college, vying for what little quiet space there is in the house to complete her online coursework.
“The stress level has increased a great deal, and I’m watching [my client’s] cognitive abilities disintegrate,” says Linda. “I think above anything else, the anxiety increase has impacted her ability to think better. Kind of like it does with any of us, right? But it’s magnified.”
Similarly, Annette Adams-Brown, who lives in a two-bedroom apartment with her 87-year-old mother in Lakeland, New York, worries that her mom’s dip in physical activity has caused her mind to slip. “She’ll come out of her room and just look around,” she explains to Health. “She’s like, ‘Where am I?’ Or she’ll say, ‘I’m going to the bathroom,’ but she’ll head to the front door. So I see more confusion.”
Graciela Antonio-Ramos, a Los-Angeles-based caregiver with Home Instead, says her client, an 86-year-old in the early-to-mid stages of dementia, is aware of what’s going on (“she likes to read a lot”) but now worries about letting Antonio-Ramos in the house. “Yesterday when I got [there], she didn’t let me in, because she says, ‘You’re probably bringing the coronavirus with you.’” Antonio-Ramos tells Health that she didn’t push back, but instead agreed to work outside in the yard.
“I used to take her hand when she got very anxious,” Antonio-Ramos adds. “I’d say, ‘It’s gonna be okay,’ and I’d grab her hand. But now I have to be very careful that I keep my distance."
To mitigate the impact of the crisis, the Alzheimer’s Association recommends caregivers design a new, stimulating routine for their loved one. “We all still have to do laundry and cook,” says Kallmyer. “Depending on where the person is in the disease, can you engage them in those activities? Or does the person, for example, like Westerns? Well, watch a movie.”
Adams-Brown, 60, has taken to playing card games like rummy with her mom and watching Family Feud. “She will Family Feud you to death. And I know it’s stimulating for her because she has to guess; she’s using her brain,” says Adams-Brown. She also calls family members to fill the time. “But I have to tell people, ‘Don’t talk about this COVID thing. Because she’s watching it on TV, and that just raises her anxiety. Talk about all the positive things that are going on in your life,’” she says.
For caregivers whose loved ones are living in a facility, regaining any semblance of control can feel impossible, especially since a report came out that found nearly 1 in 10 nursing homes have publicly reported cases of coronavirus. That's left caregivers to wonder if their relative is even safe. “One of the things we’ve heard a lot about is the distress that family members [experience] not being able to visit their family member,” says Kallmyer. “But what we’re telling those caregivers is, ‘This is the safest thing. This disease can get transmitted so easily in assisted living communities or a nursing home.'”
Dan Goerke, whose wife, Denise, is in a memory-care facility in Marietta, Georgia, is getting by with what he calls “window visits.” (Denise was diagnosed with early onset Alzheimer’s in 2012, at 56 years old, and has been living in the facility for almost four years.)
“At first, all the residents there could come out into a common area, and there’s a big picture window there, so we could walk right up to that and [the staff] would bring Denise over in a wheelchair and we’d do a visit that way,” Goerke, 61, tells Health. “It’s a lot more difficult now, because they have to be confined to their rooms. To see her [like that] is like visiting someone in a prison cell.”
Still, Goerke talks to his wife from the other side of the glass. “I tell her what’s going on, talk to her about the grandkids,” he says. “I laugh, because if I were to step back and see myself doing this, [it would be] like, ‘What is that idiot doing screaming through a window?’ That’s probably what it looks like. But it’s the best we can do right now, and I’m going to keep doing it.”
He also continues to work, hike, and bike ride, and he limits his news intake to two 10-minute power reads a day: “I’m looking for, ‘What are the statistical updates, and what am I being told to do or not do?’” he says. “And then I turn it off. I just don’t want to be absorbed in all the doom and gloom.”
Kallmyer recommends that approach to caregivers in general. “While the person living with dementia might not always have the context of what's going on, they are going to react to the stress levels of the caregiver,” she says. “It’s always important for caregivers to think about how they’re taking care of themselves and monitoring their own stress, but in this case it’s even more important.”
With the stress levels of caregivers in mind, many organizations have ramped up their support programs. The Alzheimer's Association offers a 24/7 helpline, which caregivers can call for confidential assistance or counselor recommendations. Some Medicare plans also offer 24/7 nurse helplines. Other groups are holding meetings over Zoom, FaceTime, or phone multiple times a week. HFC, for instance, added twice weekly “drop-ins” to its menu (“I sort of see it as emergency relief,” Wattles says. “If you wake up and you’re like, ‘I just need a little boost,’ you can just pop into a phone call”) as well as weekly webinars on topics like mindfulness and self-care."
“What we’re doing through our support groups is reminding [caregivers] how important self-care is,” says O’Connor. “I think for caregivers, that is very difficult. They’re so concerned about meeting the needs of their loved one, we have to remind them that they need to do things to take care of themselves.”
For Adams-Brown, managing the anxiety that comes with being a caregiver has become second nature. “I’m very aware of stress and how it manifests in my body, [because] I’ve had a lot of practice with it,” she says. If she’s feeling overwhelmed, she’ll cook or meditate or retreat to her room to practice yoga or Tai Chi.
Above all, she works on shifting her perspective. “I’m always trying to see the 'lesson and the blessin,’” she says. In this case, “I find the blessin’ is me being here for my mother. I’m comforted in knowing I comfort her.”
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