As caregivers for our loved ones with Alzheimer’s and other types of dementia, we often struggle with adapting activities to their changing abilities. Through our experiences, and what we’ve learned from others on their caregiving journeys, Nancy Treaster and I developed three important tips to help you create meaningful engagement that honors who our care receivers are today.
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Home Safety here
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Takeaways
From the moment of diagnosis, we need to shift our focus from what our care receivers used to do to what brings them joy now.
Tip 1: Adjust Our Expectations
Our care receivers’ engagement and abilities change throughout their journey — even throughout each day.
Key points:
Tip 2: Prioritize Their Safety
As we introduce or adapt activities, safety must be a primary concern, considering both cognitive and physical abilities.
Key points:
Tip 3: Create Engaging Activities
Create activities to reflect their personal history, career, hobbies and interests, while engaging their senses. Whenever possible, engage multiple senses for a deeper connection and engagement.
Key points:
When planning activities:
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Full Episode Transcript
Nancy Treaster
What if I told you that the key to connecting with our dementia care receiver is making the most of who they are now? In this episode, Sue and I explore engaging activities that make the most of who your care receiver is today. We have three tips. Sue, let’s get started.
Sue Ryan
I am, instead of trying to reclaim what dementia takes away, we embrace the present, what they have access to now. And we release our past expectations. While this seems like a simple shift,
It opens up a world of possibilities, transforming frustration into discovery for both us and for our care receivers. Through this lens, we’re now able to uncover new ways to adapt changes for them to have activities they can do now, connect them with those so they’re able to engage with them and get joy from them and feel good about them.
And also, most importantly, we’re able to honor their dignity.
Okay, let’s move on to tip one.
Nancy Treaster
Wonderful. Well, tip one is adjusting our expectations. Our care receivers engagement and abilities changes throughout their journey, changes throughout the day.
When we release our focus on what they used to be able to do and change that focus to what they can do today, we give ourselves permission to accept them for who they are.
Holding on to before. What they used to be able to do just creates frustration creates frustration for us creates frustration for them. We need to acknowledge where they are in their journey and that their engagement and activity level their their ability to engage and their activity level is changing.
And we want to adjust activities that we, we want to adapt activities to their current abilities and their current interests.
When we engage in activities, we want to read their body language. Are they still enjoying this? is it frustrating them because they can’t do it anymore? We want to pay attention to things they’re interested in. This might be a silly example, but my husband would walk around the house and unscrew the tops of the lamps. That was what he was interested in. For some reason, screwing and unscrewing the top of the lamps. First, we have a lot less lamps than we used to on that level because I moved many to the closet. But the second thing I did is I found a child’s toy, a big plastic child’s toy where something screws into a base. And that went in front of him and became an activity that he could enjoy. And it seemed to fulfill his interest of screwing things and unscrewing things from each other. So pay attention to what they’re interested in because there could be simple things that you can add that would help them engage in that activity in a more productive way.
Sue Ryan
And when we’re doing that, Nancy, one of the things that’s really helpful for us is we tend to want to be looking at major things. Often it can be just the tiniest, tiniest thing. And quick story about that, with memory care communities, music comes in quite a bit and is played. And there was a day when a pianist was just knocking it out of the park. Everybody was up dancing, who could get up. People were singing along. It was wonderfully engaging. One of the residents didn’t have access to much movement anymore. And I glanced over and I saw her foot almost imperceptibly moving, but it was moving and it took a lot for that to happen. She was so filled with joy. She was able to get her foot to move even the tiniest bit. I shared that with the other caregivers and we all celebrated. It was so much joy because it was something she could engage with.
So look at the big moments and the big things and also just the tiniest little things so we can celebrate with them where they’re at.
Nancy Treaster
You know, so that’s so important. It really is about letting go of what you expect the outcome to be. When you get a new activity that you want to introduce to your care receiver, let’s say they used to be an artist and you want to give them adult coloring books and you hand them the adult coloring book and they scribble all over the page. They don’t color the way you anticipated when you bought the coloring book. You had an expectation of how much they were going to enjoy this, but they’re still enjoying it.
If they’re having a good time and enjoying it, release your expectations. Same with, for example, puzzles. Let’s say they used to love to do puzzles. Let’s say you buy a dementia friendly puzzle, and you have high expectations that you’re to sit down and all enjoy this puzzle together. And all they do is play with the puzzle pieces. If they’re having fun, awesome. Let go of your expectations. In the end, it’s really just an engaging activity is what we’re looking for something that engages them and interests them. Now, on the flip side, there can be activities that you think will be good for them and they’ll enjoy that just frustrate them. There’s also a part of their journey where they realize they can’t do something. One of my friend’s children decided their dad needed to do word problems all day to help him keep his mind sharp. He hated it. And he kept telling my friend, this really makes me feel stupid.
We went to lunch and she said, what should I do? My children are insistent that he do these things. And I said, let it go. Let it go. Stop. We’re most importantly, trying to create engaging activities to help them have something to do. But we want to first and foremost, preserve their dignity while they’re doing it. If you’re starting a new activity and you’re concerned they might get frustrated, make sure you got a backup activity in mind that’s calming, that you know they can do, because we want to make sure we come back to something that makes them feel accomplished in the end.
Sue Ryan
Nancy, that gets to something that I call drip grief. And as caregivers are going through the journey, every time we see something our care receiver doesn’t have access to anymore, something we won’t be able to share together anymore, there’s a little bit of grief in that for us. It’s a little dripping along the way. And yet for our care receivers, they’re also going through that for several phases of their journey. They still know and they know that they can’t do something anymore and that can be frustrating for them. So when they’re experiencing this drip grief, that’s the knowledge that they can’t do something, as you were saying, the sooner we can engage them with something that comforts them, that reinforces for them, they can still do other things, the sooner we can move them away from being in that stage of frustration and grief.
Nancy Treaster
Okay, so tip, tip two is to prioritize safety. So as we think about engaging in new activities, things that we think they could enjoy, let’s make sure we’re doing them in a way that they’re going to be safe as we present new activities. So keep in mind their cognitive ability, of course, but also keep in mind their physical ability.
If you’ve listened to podcasts that Sue and I’ve done, you’ll hear a lot about depth perception and vision. So that plays a lot in things that you think they can do, but their depth perception really hinders them from being able to do it. Let’s say your loved one loves to help clean up after dinner and they like to wash the dishes or put the dishes away. Sometimes depth perception makes that an activity that they can no longer do safely.
They might start breaking dishes or dropping them. adjust and think about safety when you’re thinking about what it is, a new activity that you’re gonna introduce or frankly an existing activity that you maybe need to make some adjustments to.
Sue Ryan
Yeah, quick story about that was with my dad, he had been doing the dishes for the longest. He loved doing the dishes, a way to contribute, because he definitely didn’t cook. I know that from him. At any rate, when his depth perception was impacted, he couldn’t safely put the plates or the glasses away. And we got plastic, nice looking plastic, but we got plastic. And so it didn’t matter if it dropped, it didn’t break.and he didn’t have to feel bad and he could stay engaged with it. So simple creative things like that.
Nancy Treaster
That’s a wonderful adjustment you made to help him keep his dignity. Awesome. Also, if they’re engaging activities, maybe they love to cook and you’re no longer comfortable that they can should and could be using the knife safely. So make the adjustment. Maybe you do the cutting and you hand them things to put in the pot. So think through the activity as you’re doing it and think through.maybe we can adjust their participation in the activity to create a safer environment. Also, when you’re doing activities that you even think might be the least bit on the edge in their cognitive ability or their physical ability, make sure you’re providing some kind of supervision. That can take a lot of different forms.
Sue Ryan
Nancy, one of the things that’s, you speaking of forms is it can become very creative, really get outside the box. Another example with my dad is he loved getting the mail and he had for years. So he still was connected with getting the mail and loved to do that. And he went at the exact same time every day to get the mail. Where they lived, the mail was all delivered to the clubhouse. So he needed to be able to walk from their home down a path and up into the clubhouse.
The neighbors loved my dad. called him Hal. They loved my dad and they wanted to help my parents out. And so what they would do is one of them would come out, daddy’d start walking down the path and one of them, hi Hal. So he would walk toward them and they would walk together toward the clubhouse. There would be another friend who would be waiting part way on the path and they would start talking and they would walk into the clubhouse. And then they would be getting their mail near where my dad was so they could make sure that daddy could get the key in and get it turned and they’d be talking together and making sure all the mail was collected and then they would start walking back and another neighbor would start talking and help make sure daddy got all the way back. And this was great for everybody. The neighbors wanted to be able to do something to help. Hint, hint, if someone offers to help say, yes, thank you. They got great joy and a sense of being able to help of my parents because they were able to do that. My dad was able to maintain his dignity and still collect the mail. And my stepmother was able to get things done in the home knowing my dad was safe for sometimes 15 or 20 minutes. Get creative.
Nancy Treaster
Wonderful. I like that. Another thing to consider when you’re thinking about safety is just home safety in general as their dementia progresses. The things you need to do to make your home safe also change. We do have a podcast episode we did on that episode number seven called home safety. So if you get a chance, you might want to listen to that episode just to get a feel for the kinds of things that you need to be prepared for if you haven’t gone down that path already.
Okay, tip three.
Sue Ryan
Tip three, we’ve adjusted our expectations and prioritized their safety. Now we’re ready to think about how we create engaging activities and what this is going to be able to be looking like. Every person’s journey with dementia is different. So when we think about creating activities for them, let’s keep in mind their personal history. Think about their career, their work background, their hobbies.
their leisure activities, things like that that they used to connect with when they were doing that. So we can be creating activities with them and for them that they’re gonna have the best opportunity to be relating with. Some of the best activities are those that engage their senses and that stimulate their sense of touch, of smell, of taste, of hearing and sight. For example, music and movement are just huge. Playing familiar songs or playing calming sounds. We did a lot with Jack, 100 % Irish. He loved Irish music. We would play Irish songs.
He would sing along and he loved it. For my dad, when he got agitated, we had specific kinds of music that was very calming and you could literally watch him get calm with it. You could have rhythm activities, you could have different musical instruments, you could have them seated and do dance movements so there’s no issue with what their balance is or anything, and singing or humming along, things that they’re able to do where they’re being engaged with it.
And a lot of those experiences could be just great.
Nancy Treaster
Well, I will tell you this, I hear that from almost all types of dementia that music is a really great activity. And I’ve heard that from plenty of friends. And of course, my father-in-law had Alzheimer’s as well as one of my best friend’s mother’s. And everyone just made a big deal out of music. So who am I to know any different? So my husband has frontotemporal dementia. And so I got my playlist out, songs I knew he’d enjoy. I am singing, I’m dancing, and he is looking at me like I am the biggest fool he has ever seen. Because apparently in frontotemporal dementia, at least the kind my husband has, which is primary progressive aphasia, language and music go together early in the process. So the only reason I bother with this is if you happen to go down the music path and your loved one is looking at you like you’re crazy. It’s okay. Maybe music really doesn’t resonate with them because of the type of dementia they have. I’m just saying.
Sue Ryan
You’re just saying, So whatever it is, we wanna be creating the activities that are engaging the variety of different senses. And some of that is smell. And for example, sense that have calming properties like lavender, massaging their hands with lavender or that remind them of experiences they’ve had in the past.
Meals that they’ve had this the smell of meals at a holiday or a favorite family meal or something that they enjoyed, know, popcorn or having them participate as we talked about before with cooking family recipes, things that are going to remind them and just stimulate emotions from a particular experience. And then visual activities, blocks of different colors. And then Nancy, you had a really creative way that you used photo books.
Nancy Treaster
I did. Every year I create a family album and I’ve been doing it since 2007. And those family albums I would, my husband at the time, had given him all, put all the coffee table books that we had in front of his, of the sofa where he sat a lot. And he would flip through those and look through the coffee table books. And I thought, you know, I bet he would enjoy the family albums. However,
At this point, he was, I wasn’t so sure about his, well, sometimes he’d tear pages in the books. I didn’t care about the coffee table books. So I went out and ordered three random family albums that I didn’t care what happened to them. I let go of the outcome, right? And we’d sit down together and go through the family album and talk about the pictures and stuff. That’s great. But he would also flip through them himself. And I didn’t care if he ripped pages or whatever happened because these were his books, in my opinion, and you know what? I let go of the outcome, whatever happened. And some of them lost a page or two, but most of them he really enjoyed going through the family album.
Sue Ryan
which is great. It’s another way for them to connect. And then yet another one is activities that are related to touch. In the care community, one of the things that was so heartwarming, and I hadn’t had exposure to that before, is baby dolls. That both men and women loved holding babies, some of whom when you moved them they made sounds and things like that.
they would hold, would rock, would hug the baby. Another one is somebody brought in a cat that purred. And they brought in a toy cat that purred and there was a gentleman who sat it on his lap. He happened to have been in a wheelchair and he had that cat on his lap and he would pet that cat and it would purr and he just loved it.
Sue Ryan
And then another one is that real tactile feeling. And one of the ones that was really, really popular was called a bead maze, where there was a wire that kind of moved and it had different brightly colored beads. And they were just fascinated with getting them up. And then the beads would go down and moving them back and forth. And then my dad, who, he was great. He loved to do the dishes and he also loved to do the laundry and he would fold the laundry. And one of the things we did is we would, fill a laundry basket with unfolded clothing and have him go take the basket. He would put it on the bed and he would fold it so carefully and it took a long time to do it. He would fold it wonderfully done and he’d be so proud of himself and we would just celebrate, celebrate, celebrate. And then not too long later after we had a chance to go in and take everything out and shake it all back up again, we would bring the hamper out and ask him to go fold the laundry and he had forgotten by that point that he had already folded it. And so he gave him an activity to do that he was engaged with and he really enjoyed. And then another example of that from the sense of touch was when my husband lost the ability to be mobile, I got him a fidget blanket and we’ll put a link in the show notes. There are a variety of them. But what it had is a lot of different ways that you could have a sensory connection for touching it, have different textures, had things that made sounds, had beads and things like that. So it gave him something for his hands to do.
Nancy Treaster
I like that example. You know, one of the other things you said at the beginning, Sue, of this tip was creating engaging activities based on their interest or their hobbies. And in the concept of touch, one of the things that my husband loved is cars. He was a car freak and he loved to wash his car. He’s also a clean freak. So these two things go together. So on beautiful spring days, nice and warm. And I want to get him outside. I’d back a car out of the garage and we would wash a car. And when you talk about letting go of the outcome, that was critical. would get, he didn’t understand about what it took to get ready to wash a car. So I’d fill the buckets up with soapy water and get the hose out and everything ready, give him a sponge and he would wash the car and I’d wash the car and then I’d rinse the car off and I’m thinking we’re done. And he, I’d look over there and he’s got the soapy sponge and he’s washing the car again and I’d ritz the car and it was well washed cars at all times, thoroughly washed cars, probably the right thing to say. But he was enjoying it, it was attaching back to something that he liked to do, it was a sense of touch which is also awesome, he was in the sunshine and I had to let go of the outcome. But when I let go of the outcome, it was a great activity because you could see how much he was enjoying it.
Sue Ryan
Yeah. And that’s so important because you’re meeting them in the moment. You’re meeting them where they’re at. You could see, you could find joy in your heart because it was bringing joy to his heart. And which is really, really helpful. And one other way is just talking about activities that create social connections. And there are a variety of different activities that create social connections, like small group activities where they have, for example, simple games or puzzles.
And one of the things that’s really helpful here is sometimes our care receiver is really content just to sit and watch. And so when they’re involved in some of these activities, just observe their body language. If they’re calm and they’re observing, it’s all they want to do. So again, we’re meeting them where they’re at. Sometimes they want to get right in there engaged. Sometimes they just want to sit and observe. So another thing is religious or spiritual or cultural activities Quick example with my husband he was a mass everyday Catholic and that was something that was an important part of his life and We made sure that he got to church every single day. I Happen to have been going through graduate school during part of his progression and The other people who came to mass every day said you go study in the back of the church and we’ll make sure that we help him through the service. And it was so calming to him. And when he would get under great amounts of stress, I would take him to church and he would sit there and he would just visibly calm. And then there’s another area where there are specific locations, where there are specific activities that engage both the care receiver and the caregiver. And one of those are the memory cafes.
Another one would are senior centers. I used to go with Jack and we would go to the senior center and we had activities where we were both engaged together with other groups. Those were really, really very helpful. So a lot of different ways to create and nurture social connections.
Nancy Treaster
I like the social connections concept. let’s summarize.
Nancy Treaster
One of the greatest gifts we can give our care receiver is giving them permission to be who they are today. Letting go of outcomes of activities that we support them with and engage them in.
In this episode, talked about in create in this episode, we talked about creating engaging activities for our care receiver that honors where they are in their journey and honors and gives them dignity.
We shared three tips. First, we need to first adjust our expectations. Second, we need to ensure that things are safe, that activities are safe. And third, we want to engage in creative activities that support them with their interest and their senses and then provide some level of social connection if possible.
If you have tips that you think would help create engaging activities for care receivers, please share them on our Facebook page, our Instagram page. The links are in the show notes.
Any products we discuss will also have links in the show notes. And if you can, if you like this podcast, please subscribe to it or follow us and rate and review it as well. We’d appreciate it.
If you use these tips to create engaging activities for your care receiver, you’ll create a wonderful experience for both you and for them.
Sue Ryan
We’re all on this journey together.
Nancy Treaster
Yes, we are.
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