For caregivers of people with Alzheimer’s, COVID-19 poses new challenges

For the more than 5 million people in the U.S. who are living with Alzheimer’s disease, the COVID-19 pandemic has presented a whole new set of unique challenges. The same is true for the 16 million family members and friends providing care to these individuals.  For those living in nursing homes or long-term care settings, visits have been prohibited to protect the community from virus exposure; for those living at home with family, the coronavirus has caused fear, anxiety and significant disruptions to regular routines for everyone involved.

Ken Gregersen, for example, moved his wife of 67 years into a care facility in 2016, six years after she began to display symptoms of Alzheimer’s. From then until the pandemic’s onset, he visited Evie at her care facility three times a day, every day, so he could feed her breakfast, lunch and dinner. While Evie is unable to feed herself, speak or walk, Ken says his visits are meaningful.

“When I visited her at 5:30 for dinner, I’d try to spend extra time with her, taking her on a walk, singing songs,” he said. “Hopefully she heard me. I’ve been told by other people that attended to her that she would eat more breakfast for me than for anyone else!”

But in early March, his routine changed. The facility was no longer allowing visitors.

“I really do miss her,” Gregersen said. “I looked forward to seeing her because we could touch. I could hold her hand; I could give her a kiss.”

Now, his visits with her are limited to FaceTime calls, which her nurses facilitate. She isn’t strong enough, he said, to use a cellphone or device by herself — or for him to visit at her window because she wouldn’t be able to turn her head or look outside.

“Both the hospice nurse and the certified nursing assistant have brought their tablet with them so that they can put her on FaceTime, and I can see her face, and I can talk to her; I can sing to her,” he said. “I like to think that she recognizes my voice.”

At-home care has been no less disrupted by the virus. Annette Adams-Brown lives in a 55-plus community with her mother, who has Alzheimer’s.

“I feel really honored that I’m able to be here during her time of need,” Adams-Brown said. “(My mom) is 87 and has been there for me my entire life — good times and bad.  I’ve come to terms that this is part of my life. I don’t look at it like it’s a burden.”

During the pandemic, one of the biggest hurdles Adams-Brown said she faces every day is explaining to her mother what is happening and how to stay safe.

“The interpretation of what she sees on the news is distressing to her because she thinks she can get it by going out in the air,” she said. “I try to explain to her that’s not the case, but she sees the people with the masks on, she hears county executives talking about the numbers, so every day I have to remind her that it’s something that’s been going on for a while, because she thinks it’s something new.”

And although both she and her mother are used to being very involved in social and civic activities in their area, the pandemic has limited their ability to connect with friends and family as they usually would. Whereas they used to go to the movies, the park and religious gatherings, they are now limited to interacting only with one another.  

If you’re a caregiver for someone with a form of dementia, now is likely a more challenging and stressful time, but there are ways to cope. Here are five ways you can make a trying situation just a little bit easier to set yourself — and your family — up for success.

1. Prepare to be patient

Patience is a necessity when caring for someone with dementia, but during a pandemic, it’s that much more important, said Beth Kallmyer, vice president of care and support at the Alzheimer’s Association, so it’s best to have a plan in place to help them cope.

“Explain changes in ways a person with dementia can understand,” she said. “Be prepared to repeat this explanation over time, as the person may not remember. Even though changes may be upsetting, it’s important to remain calm. People with dementia will often take their cues from the people around them.”

This applies to encouraging proper hygiene, too: Consistently reminding your loved one to wash their hands — and even writing the instructions down and posting them somewhere they’ll see regularly — can help keep them safe from the virus.

2. Respect the rules

While it may be frustrating to be cut off from seeing someone you love because of the pandemic guidelines, remember that it’s for a very, very good reason, Kallmyer said.

“The current environment is necessitating difficult changes for everyone, and many are not optimal or what we would choose,” she said. “Caregivers need to recognize 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.”

3. Don’t isolate yourself entirely

Even with social distancing guidelines in effect, remember that staying connected is important, both for you as a caregiver and for the person with the disease. Gregersen, who volunteers to facilitate support groups for caregivers through the Alzheimer’s Association, has continued to be in touch with group members on FaceTime and conference calls.

 “It’s not the same as being together, but it helps a lot to see each other’s faces and hear each other’s voices and share some experiences,” he said. “Caregivers need a support group. This isn’t 100%, but it’s better than nothing!”

 Positive social interaction also helps maintain a sense of normalcy for people with Alzheimer’s. Adams-Brown explained that she’s been encouraging family members to call her mother and keep the subject matter light in order to offer support without adding to her anxiety. In addition, she goes though old photographs with her mom to remember things from her past, when possible, and reminisce about happy times.

 Kallmyer agrees that staying in touch is important for all parties: “If you are unable to visit, reassure the person you will keep in touch in other ways. Ask about alternative communication methods, including phone calls, video chats or emails. If your family member is unable to engage in calls or video chats, ask the facility how you can connect with staff to get health updates.”

 4. Let yourself have moments of solitude

 Self-care is critical when someone with dementia depends on you, whether they live at home or in a care facility, so carving out time for yourself is imperative.

 “Exercise is key,” Adams-Brown said. “It’s wonderful. It works wonders. Meditating is another option.  A lot of people think you have to be trained, but it’s just about focusing on one thing that lifts your spirits. I do a lot of smiling, a lot of laughing. Sometimes, when it gets unbearable, I may go for a walk myself.”

 5. Stay active and healthy

 Keeping up a routine and maintaining your health is the best way to prepare yourself for the end of the pandemic restrictions, Gregersen said. Beyond getting up at 5 or 6 in the morning and riding his bike for an hour each day, he focuses on keeping himself virus-free so he can see his wife as soon as possible.

 “I think it’s important to stay healthy yourself and try to find something to keep busy, because this is going to end sometime, and we want to be ready to resume our contact again as soon as we can,” he said.

 Gregersen said he can’t wait for that day to come. “Evie and I are a close couple. We’ve always held hands; we’ve always done a lot of touching. And I just look forward to holding her hand and kissing her on the forehead and giving her a hug.”

 Adams-Brown, too, is excited for that day, when she can allow her mom to see her aunt and have some fun.

 “I’ll be very happy to see my mom see her sister,” she said. “She’s very much spiritually connected to her, and it’s amazing. They are so funny. They cheat playing cards!”

 If you are struggling with being a caregiver to someone with Alzheimer’s disease during the COVID-19 pandemic, the Alzheimer’s Association’s tips for caregivers and its 24/7 Helpline, 800-272-3900, are available with resources and guidance.