Dementia Care and Communication during the Coronavirus Pandemic

By Rachael Wonderlin, MS

Special thanks to Michelle Tristani from Benchmark Senior Living

Communicating with people living with dementia is never an easy task: for many families, it’s the hardest thing they do on a regular basis. Concerned with how to answer challenging questions from an aging loved one (“Where are my parents?”) to coping with repetitive phrases or requests, family caregivers are often unsure of exactly what words to use or even what tone to use.

Enter: COVID-19. In a time where our world seems overrun by stress and uncertainty, comes even more stress and uncertainty for families who have loved ones living with dementia. How can you best communicate with a loved one if their senior care community is shut down due to coronavirus concerns? How can you visit? What do you say to a loved one who may be experiencing anxiety, but may not be able to understand exactly what’s happening around them?

Put simply, here’s the key: we don’t want to add our own anxiety into the mix.

Many people living with dementia experience what I call, “Timeline Confusion,” which essentially means that they aren’t living on the same linear timeline that we are. It makes sense, then, that a person with dementia may talk about events that happened 40 years ago as if they happened yesterday, or mix up a loved one with someone else. For someone with Timeline Confusion, understanding the effects of COVID-19 is truly impossible—and making them more concerned or worried isn’t going to help matters.

“For persons with dementia, explain that there is a bug or flu going around, not that a viral pandemic is shutting the world down,” Michelle Tristani, Corporate Director of Memory Care at Benchmark Senior Living explains. It’s true: sometimes, too much explanation is far worse than any explanation at all.

So, does it make sense to call your loved one with dementia on the phone? The short answer is: it depends.

Here are my tips for calling a loved one living with dementia who lives in a community:

1. Stay calm. Anxiety is very contagious. When you are visiting or talking with someone living with dementia, do your best not to bring them into your anxiety. Trust me: it won’t make you feel better, either.

2. Assess. If you are not able to visit your loved one, assess if they can use the telephone. Have you called them before? Do they understand who is calling when you speak? How is their hearing? Consider whether it makes sense to reach out to them via phone.

3. Prepare. If it DOES make sense to reach out via phone, make a little script of what you want to say to them. I would recommend avoiding a whole explanation of why you can’t visit. It is likely to be confusing and isn’t really solution-based. A good thing to say is, I’ll see you soon, things have been pretty busy lately, I love you and I’ll be by ASAP.”

4. Don't over-introduce. This really goes for any phone conversation, but try to not over-introduce yourself. By this I mean, don’t call and say, Hi, Mom, this is your eldest daughter, Lynn.” (Unless, of course, that’s the same sentence you have been using this whole time and it would be strange to change it now). I recommend something like, This is Lynn,” because it gives your listener an opportunity to define who Lynn is to them. Your Mom may know that Lynn is her daughter, but she may be picturing Lynn as a 10-year-old. You don’t sound 10, so she thinks you’re a different Lynn.

5. Get help if you need assistance to make the call successful. Can a staff member at their community help them use the phone? Can you find a phone that transcribes messages as you’re speaking, so that they don’t miss a word?

6. You are doing your best. Recognize that, no matter your circumstances, you are doing the absolute best that you can. Your loved ones know that you love them. You are not neglecting your person by not seeing them or calling them: you’re doing the best that you can to keep them safe and happy. Most people living with dementia who cannot use the phone anymore also do not understand the passage of time. For example, there’s a very real chance that they’ll think you were there yesterday when you see them for the first time in a week.

Think through creative options if you’re looking for ways to connect with loved ones with dementia without using traditional phone calls. For those who are local and in-person, try visiting a loved one from the other side of the window.

Here are some more creative options we’ve seen people accessing in the last few weeks

  • Video calls: be sure that you’re asking for help with video calls when you need it—can a staff member help your loved one get set up? Perhaps you can set up transcription on the calls so that each person can listen and read.
  • Pen pals, virtual or pen and paper: write to a loved one by more traditional means, or even use a whiteboard on one side of a window to get your message across. You can also try text and virtual messaging systems for this!
  • Sharing art: can you share artwork with a loved one, virtually, by mail, or through the window? Draw for each other or share your favorite artist’s work.
  • Virtual trips: I’ve seen more and more museums and programs offering virtual trips and sightseeing—what a cool way to “take a trip” together!
  • Outdoor programming with megaphones or music events: can you be together, listening to the same music, while still staying 6 feet apart?
  • Care packages: design a care package for your loved one and ship or deliver it!
  • Photo albums with recorded messages: there are photo albums with audio recording devices that are perfect for linking memories to audible descriptions.

If you’re worried about your loved one remaining engaged and active despite social distancing rules in their dementia care community, take a deep breath. In the last couple of weeks, I’ve seen some truly amazing and creative programs coming out of senior living communities. For example, I spotted a beautiful program for residents in Yorktown Manor, a community based out of Yorktown, IN: the staff set up a “fishing” experience for residents in their hallway, complete with fishing poles and an enthusiastic narrator, talking through the video as if giving a play-by-play for a competitive sporting event.

Another example comes from Michelle herself: “Benchmark Programming Associates are planning safe, engaging alternative programs for independent, assisted living, and memory care. While programs in independent and assisted living will not take place in groups, we have many self-guided, outdoor, ‘threshold and hallway’ programs we are implementing,” Michelle explains in her Programming Planning Guide. “We have 100 days of self-guided packets including a daily schedule. Each packet includes brain challenging activities, Pinterest posts, exercise programs, Associate visits both in-room and from outdoors.”

I’m impressed every day by the new, interesting, and heartfelt ways that people are finding to connect with those living with dementia. Caregivers are a resilient group—this proves it even more.

Rachael Wonderlin is a gerontologist and a dementia care advisor who runs the popular blog Dementia By Day. She is the author of When Someone You Know Is Living in a Dementia Care Community and the forthcoming book Creative Engagement: A Handbook of Activities for People with Dementia