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COVID-19 Communication Guidelines for Loved Ones Living with Dementia

We are living in a strange and stressful time. As I write this, there are signs in MN that we are absolutely doing the right thing by social distancing. There is hope that we have already positively impacted our ability to cope with cases and minimize the number of deaths from COVID-19.  But how in the world are we supposed to explain this situation, “sheltering in place”, visiting restrictions, and the proliferation of masks and gloves to loved ones experiencing cognitive changes, many of whom cannot hang onto new information for very long?

The good news is that we do NOT have to explain ALL of it. In fact, please don’t try.  Here are some guidelines for communication that can help satisfy, soothe and make sense to a person living with dementia.

One size doesn’t fit all. You need to consider where YOUR loved one is, cognitively and emotionally.  Talk to them about the pandemic in a way they can understand. Generally, this will mean:

  • Keep it simple. Don’t over-explain, use too many words, or give a lot of detail.
  • Avoid frightening statistics or dire predictions. These can unnecessarily raise anxiety which lasts long after the statistics are forgotten.
  • Stay calm. Don’t transfer your own anxiety to your loved one. Persons with dementia are very sensitive to the moods and emotions of others.
  • Do not argue. Simply reflect back the person’s concern or emotion.
  • Keep your tone matter of fact and as light as possible.
  • Put this situation in a context that the person can understand. For some, you can draw upon their long-term memories of growing up during World War II, or hearing stories their parents told about it.
  • Focus on positives. Talk about meaningful things in your life that are happening or inspiring things you’ve heard about.
  • After reflecting back and reassuring, distract with activity. Ask for the person’s help with something. Do something fun over the phone with the person.
  • Find something to thank the person
  • Tell them what they mean to you, i.e. name something that you get from them.
  • Don’t make promises you can’t keep about when you will visit next.

Next, you’ll find examples of how these techniques might be utilized over the phone.  Things that you’re loved one might say are listed below.  Possible responses are bolded.

Why can’t you come to visit?

  • Oh, you’ve been expecting me! I’m so sorry. (Reflecting back the person’s concern)
  • There’s a nasty bug going around and they’re trying to keep us all safe. (Keeping it simple and matter of fact)

You don’t care about me at all!

  • You’re feeling like I just don’t care. I can sure see why you feel that way. I’m so sorry. (Staying calm.  Reflecting back their emotion. Not arguing)

This is just terrible.

  • Yes, it’s tough for a lot of people. The good news is that hospitals and government agencies are working hard to get us all through this.(Reflecting back their concern, then focusing on the positives. Cite positive examples of how humanity is coming together.  See the Good News Network website if you need inspiration)
  • We will be safer if we both stay put. This won’t go on forever. (Reassuring, keeping it light) 
  • Mom, you‘ve told me stories of how your Mom and Dad got through World War II, with shortages and rationing. Our country is pulling together in a similar way. We will get through it. (Putting the situation in a context the person can relate to, and reassuring.)
  • Thanks for chatting, Mom. It’s so good to hear your voice! I always feel better after I talk to you. (Thanking the person, letting them know what you get from them) I love you. (Reassuring) 
  • Mom, would you do me a favor? You know that chicken soup with vegetables you used to make?  It had a whole bunch of vegetables in it.  I want to make that.  Can you maybe tell me all vegetables I should put in that soup? I’ll make a list. (Distracting with activity, asking for the person’s help, doing something fun over the phone)
  • Dad, I was thinking today of that song you like to sing, what is it, something about sunshine? …You are my Sunshine, that’s it! How about we sing it to each other over the phone. You can help me if I forget any words. (Distracting, asking for the person’s help, doing something fun over the phone)

When will you come visit me?

  • I will try my best to come as soon as I can. (Reassuring. Not promising a specific date)
  • In the meantime, how about we plan to talk again tomorrow morning? (Making a promise you CAN keep) I’m going to write that down in my calendar so I don’t forget. (Reassuring)

Keep in mind, one of the best things you can do for your loved one right now is to take care of yourself. Pay attention to your own level of stress, be kind to yourself. Stay off social media and the news if it makes you more anxious. Be sure to make some room for relaxation.  Take care, be safe.

Resources for this information include Teepa Snow’s video: https://www.youtube.com/watch?v=6yi79gKdVRo  as well as suggestions from https://www.healthline.com/health-news/caring-for-people-with-alzheimers-during-covid-outbreak#1.-Focus-on-safe-hygiene  and Ashley Barnette, Activities Director, Fountains at Hosanna.  

–Marysue Moses, Dimensions Program Coordinator | mmoses1@fairview.org