As soon as someone is diagnosed with any form of dementia, such as Alzheimer’s Disease, Lewy Body Dementia, or Vascular Dementia, they lose friends and family. Even people who were once close to them may stop coming over to visit. People with dementia often end up becoming more and more isolated because their family and friends don’t know how to communicate with them. Family and friends are often scared of dementia and, as dementia symptoms become more prominent, have a hard time having compassion.
My mother, who lived with Lewy Body Dementia for nine years, began losing people early on. Quite a few friends stopped visiting, and even some family pulled back. Communities my mom was once involved in became inaccessible to her because people would ignore her and not attempt to include her anymore.
Often when friends and family pull back, the hurt is not intentional. It’s just that dementia is hard to understand, and people tend to be unable to believe that folks with dementia can understand and communicate. People also get frustrated at hearing the person with dementia tell the same stories over and over again, ask the same questions all the time, or argue about things that are not actually true, such as whether a deceased loved one is still alive. It is hard for many people to see the world through the eyes of dementia and be patient.
Over the years of being care partners for my mom, my dad and I researched ways to reach out to people with dementia and connect with them. We always tried to tap into compassion first so we could see the world through their eyes and understand them. Through a Montessori-based art program I created, I now teach other people to communicate and care for folks with dementia. Here are five tips to help you remain empathetic.
1. Remember that the person with dementia is doing the best they can.
They are not trying to annoy you, and they are not pretending that they don’t understand. Their mind literally does not work, and they are unable to see or know what you see or know.
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2. Meet the person with dementia where they are.
This does not mean we let a person with dementia jump out of a moving car. We just try and meet them where they are as often as possible, within safe boundaries.
So, for example, when my mom saw bugs in her food and became agitated, I didn’t argue with her. I either removed the food items that looked like bugs to her or gave her different food. I did not try to convince her the food was fine.
3. Do not argue with or correct a person with dementia.
Arguing is useless because the person with dementia has a different reality than we do and will be unable to believe you. Correcting a person with dementia increases shame. Instead of correcting, give them a new instruction or change the way you’re interacting so they can be more successful in the task they’re undertaking.
4. Prepare their environment for success.
There are many things that cause unnecessary issues for people with dementia. For instance, a person with dementia may empty all of the cabinets looking for a glass for water. We could prepare the environment for them by placing large labels on cabinets to tell them what is inside, or by removing the doors from the cabinets so they can easily see what they are looking for. This way, they do not have to rely on memory to find what they need.
Shadows, contrast, and clutter are all things in the environment that must be attended to in order to help a person with dementia function better.
5. Maintain a non-anxious presence.
People with dementia read body language and emotion well. If they don’t follow a direction we give them, and they do something we didn’t ask, they immediately know if we’re upset or annoyed with them. This understanding creates fear and shame and breaks down communication.
Instead, if we attempt to take mistakes and missteps in stride and change how we interact, communication channels remain open, and people with dementia are much more successful.
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While it’s great to read about these concepts, it’s hard to believe they work. To see these tips in action, here is a video of me working with a person with dementia on a wonderful art project:
(The video transcript is below.)
For more information about compassion-based dementia care, please check out my book, Creative Connections in Dementia Care: Engaging Activities to Enhance Communication.
[Headline image: The photograph features an older Black woman smiling, resting her hand on her neck. She has short white hair and is wearing a yellow shirt. Behind her is a blurred sunlit field and trees.]
Hi, I’m Rev. Katie Norris.
In today’s video you are going to see a recipe in Creative Connections in Dementia Care: Engaging Activities to Enhance Communication and I am going to be working with Bob and Luanne.
Bob has dementia and Luanne is his care partner.
You are going to see different ways that as I work with Bob I modify the recipe and present it to him in an accessible manner.
So, let’s get started.
Alright, so Bob, before we get started on our art project, we are going to fill out a little form that says how we are feeling today.
Which face looks most like you- unhappy, neutral, or happy.
I am not happy right now.
Alright, so the neutral one?
Alright, that sounds good.
So, we are going to pick our first color that we are going to use.
Bob, would you like blue or green?
And then we are just going to paint our paper.
So, if you would like to follow me and put yours on the paper here.
And then we are just going to roll across.
So, do we feel like we have our papers covered like we want them or would you like a little bit more?
My thoughts are, whatever you would like is great.
Okay. I think that will be good.
So, I am going to clear all our stuff that we have right now and get our paint for our next part.
Bob, you and I had green paper here.
But then we painted our paper green and so it was hard to see the green painted paper on a green placemat so I switched it out to red.
Now we have our second set of supplies and the first thing we are going to use is our paintbrush.
So, if you would like to pick up your paintbrush.
Alright, and we are going to dip it into the first color on our plate, so that is going to be your red one.
And you can just dip it in and get a whole bunch on there like that.
Yep, anywhere you would like. Great.
And then, since we need a lot of paint every time we do this we are just going to dip it in again.
And then for this dot, if you just take your brush and press it down like that and lift up and see how that works.
Yep, and then lift up. Perfect.
And then we are going to take these cards.
So I am going to give you a card. It was an old gift card.
I know, there’s nothing on it anymore so now we are going to make it all messy with paint.
Alright, Bob, so you are going to take your card in your hand.
Here, you can take this one.
So you are going to do the same thing that I do.
So where your red is, you are going to wipe it. Like you spackle a drywall.
So you are going to pick up your card.
And on your red you are going to swipe it.
Yep. And then we are going to do that again on all the rest of the red part.
So anywhere there is red, you wipe it, like that.
So we are going to use the same paint brush and I know it has red paint on it, but that’s okay.
And now we are going to put that in the yellow paint.
Alright, so you are going to pick up your paint brush and put it in your yellow paint and get a whole bunch on there and make a dot.
And you can overlap colors and do whatever you want.
We are going to pick up our card and I am going to give this one to you.
Alright, and so, on the yellow, we are going to go like this- wipe your card across the yellow.
So you can take your card and wipe it across the yellow there.
I noticed that when I was working with Bob, a couple things.
It’s totally fine, even though I’m making dots, that Bob does lines.
And when I do the swiping I’m going to move the plate away because it is distracting.
And I am going to do the swiping more just kind of free-form because Bob was able to follow that a little bit better and see if that works just as well.
We are going to move on to our white paint now.
Sometimes, if I know the paint color needs to be spread out a little, I cue and guide Bob more by pointing exactly to where he should put some more paint.
I am going to pick up my card and swipe it on my paper and would you like to do that on yours? Pick up your card and swipe it?
That looks awesome. (laughter) That looks so cool. (laughter) Yeah, good job there.
Alright. Do you like it or is there anything else you’d like to do to it?
Is it alright the way it is?
Alright. I like it too! So then we’re all done. You and I used the same colors, but we both did them a little bit differently, right. And yours came out more with the lines, gorgeous. And then I do like all these little tiny kind of swirls and I get this effect. And then Luann does bigger swirls and gets a larger almost like a fan effect with her card.
There are a few things that I noticed working with Bob because I haven’t seen him in about six months and this is the first time we’ve done this project. Bob follows directions much better if I just do it and he follows me, which is a very common Montessori technique where a teacher will present the Montessori activity in complete silence and then the kids go and do the same thing, and so that works really well with Bob. And so as you get to know the person that you’re working with better, it’s always the biggest thing with Montessori is that you need to know the individual person. Every time I do this art project with him, now I know how to modify it to make it more accessible to him. And Luann had a few words about what she likes too about doing the projects together.
I just love at the end, I mean, ‘cause in the middle of the project, I’m really engrossed in what I’m doing, which, which is great fun, but then at the end, looking at what everybody did, they’re always completely different, even though we had the same steps, and the same materials. And so there’s a wonderful discovery, at the end.
Would you like to do some art again sometime?
Okay. Great. And actually, Luann, would you feel comfortable, after, um, having done this all together, if you did this at home with Bob sometime?
How are you feeling now? Which one looks like you? Unhappy, neutral, or happy?
I am thinking… happy.
Alright. One of the reasons we fill out this form is to see if there’s a change. And so when we started the project, Bob said neutral that he was feeling and then afterwards he was happy. And a lot of people wonder how you evaluate if artworks or what it does for someone with dementia and we always say we evaluate it by smiles. So if you are happy at the end, then it’s been a beneficial time together.
Thank you for watching today; we hope that you found this video helpful. For more information about the Carolyn L. Farrell Foundation for Brain Health, please go to our website, www.farrellfoundation.com. (Music)