Dealing with Dementia

Mike: I went to go visit my mom last week, and, well, it was a typical visit when you visit somebody who has Alzheimer’s or dementia of any sort. Some good times, some bad times. It’s not always an easy conversation.

Kim: And it’s hard to sometimes be able to care for them when they’re acting like they don’t want the care, too.

Today, we’re going to talk to Jen Brown, who is a long-time speech therapist, and you have worked a lot in your career with people with dementia.

Jen: Absolutely. Yeah.

Kim: And we’re so glad for you to be here. And I think one of the things that can be very challenging as somebody who’s caring for somebody with dementia is that they sometimes don’t want your help or they don’t think they need your help. Yeah. What do you do?

Jen: Right. Right. Exactly. Like, what do you do? You need them to do something or you need to do something for them, and they are resisting. They’re saying they don’t need the help or all of the scenarios that we run into. And so I think the biggest thing to remember with someone with dementia is that the way that they’re behaving, a lot of times we call them “behaviors”. If we sort of change the way that we think about those and realize that it’s more of a response to an unmet need, then that can sort of help us frame how we can approach them in a different way.

So it kind of depends on the situation and the stage that they’re in as far as what you would do.

Kim: Yeah. So give us maybe an example of maybe it’s trying to take a bath. Is that a pretty common situation where there’s a challenge often?

Jen: Absolutely. Absolutely. And, you know, what you would do would depend on their stage of dementia, obviously. But when I talk about this with people, I ask them to sort of imagine themselves in a situation to where you are in your home and you may have just woken up from a nap. You know, we’re all a little groggy and confused sometimes when we have taken a nice, good long nap, but you are sort of still trying to get your bearings. Someone comes in. You may or may not recognize them. They look kind of familiar, but here they are and they’re talking really fast and they’re walking at you really fast and they’re coming and they’re trying to take your clothes off. What are you going to do? Right. You’re going to push away. You’re going to be any human being is going to defend themselves. This is not anything that I am consenting to necessarily get away. I’m going to defend myself.

Mike: It’s a good analogy. Yeah.

Jen: Yeah. Yeah. And it is a lot of putting yourself in their shoes. And so what we know is that as dementia progresses, the ability to make sense of the world around you goes, it diminishes and it takes longer to understand what’s going on. Even, you know, it can be what someone is saying to you. It can be what you’re seeing, what you’re smelling, what you’re hearing, any of that. It just takes a lot longer as the disease progresses to make sense of that. And so us walking into a room at what we feel like is a normal speed, maybe a little rush because we got a lot of things to do. Feels like someone rushing at them and it feels like a physical attack. And so again, you know, like we said, depending on the stage of it, you might walk in very slowly. It becomes very important to be comfortable with being uncomfortable with how fast you’re going to go. It’s going to feel like a snail’s pace, but it’s what that person needs in order to make sense of what’s happening.

Yeah. So even just, even just that slow approach can in certain cases help turn things around.

Kim: And I’ve all, I’ve often heard too, that approaching them from the front, like where they can see you.

Jen: Exactly. Because there is this cognitive tunnel vision to where they literally can’t see you. They don’t recognize that you’re there if you’re from the side. So imagine this disembodied voice telling you to do something that you don’t necessarily want to do or think you need to. You’re not going to do that. And you’re going to fight that.

Yeah. So coming straight on being at their level. So if they’re sitting in a chair or sitting on the bed, actually kneeling down, leaning down and getting eye level as opposed to up above definitely helps as well. Even coming in with a soft voice, a helpful voice, a smile on your face. You can hear that smile in your voice can make all the difference in them understanding your intention, regardless of what you’re saying or doing.

Mike: Yeah. That’s what I do with my mom. When I saw her last Friday, “hi mom, it’s me, Mike, your son. How are you? And she gives me this look.” “Are you a relative?” “I’m your son, mom. How are you?” “You’re Mike?” “Yeah, mom, it’s me.” And you just have to be patient. You do. You do.

Jen: I’ve heard that sometimes you have to give up to 90 seconds for them to process what’s being said, what’s being asked of them. Which feels like an eternity, as
you’re sitting there. Especially if it’s if it’s your mom and you’re waiting for her to recognize you and you’re not sure
if it’s gonna happen today or not. That’s that’s a tough weight but again being comfortable with just sitting and letting them understand what’s going on, who you are, what you want just makes a
world of difference.

Mike:
Yeah and there are so many ways where you have to communicate in a different way. You have to, besides having the patience of knowing that they may ask you the same question four or five times.

I told my mom five times she’s 82 years
old.

How old am I again? I’m 82?
You’re 82 mom you’re 82.
Wow I don’t feel that old

That type of thing where you know it’s almost like dealing with a little kid, because a lot of times when when you have toddlers they ask those same questions over and over and over and a lot of times that’s how my mom has been.

Jen: Yeah absolutely and and being willing to answer those is very important. Not talking down to

well I already told you you’re 82 years old”

No it’s the first time they’re asking the question in their mind and it’s the first time they’re hearing that answer as well.

You realize where they, are what their mindset is, and you you have to be in their world.

Kim:
yeah I always feel like the number one thing you should never
say to a person with dementia is “Remember”

Remember then or remember this”

and I’m terrible. Mike elbows me often because I forget
that with my mom. It is it’s really really hard because you want them to learn, you want them to remember. It’s
really really difficult coming to terms with the fact that they just don’t

Jen: Yeah yeah they they don’t and it’s not
because they don’t want to, it’s because they physically cannot anymore remember.

Kim: and I feel like it’s important to be able to differentiate if somebody is being belligerent or just uncooperative.

Knowing the difference between if that’s their personality and they’re mentally fine, that’s just their personality, versus with somebody with dementia. Don’t you think?

Because obviously if somebody’s just being belligerent, because they’re belligerent and that’s just their personality, and
they’re they know exactly what they’re doing – that’s a whole different conversation isn’t it?

Then when we know somebody has dementia whether it’s sort of beginning stages or more advanced.

Jen: Absolutely and and the way that you say that, it’s a whole different conversation. 100% that’s right. If someone is knowingly doing these things [that’s] completely different. There are other psychiatric disorders. Just you know who we are as people um versus “I truly don’t understand what you want from me and this feels like a physical attack on me”. You would behave in those situations very differently as you know as an adult who can reason.. versus “I’m in a panic type” situation.

Kim:
yeah and I think it’s so interesting to really think of, when you really think in that terms of, there somebody’s coming to
me and I don’t understand what they’re wanting me to do, and really just gives you a different way to think about it?

As somebody, as an adult child, as watching their parent and maybe kind of on the beginning stages..

How do you start identifying that that’s what’s happening versus it being they’re being difficult?

Does that make sense? How do you sort of know where they are and and having to flip that switch really in your own mind as the caregiver of “oh now I understand, they just they don’t understand”

Jen: Right, right, you know I think it comes on over time, and as you’re just beginning to see things be more difficult for them that’s when it’s your cue to, sort of, start realizing that you’re going to have to think differently as well.

Because you know in an earlier stage you might be able to come in, say your name, give some verbal directions about what you want them to do, and they can sort of follow it. And then as it progresses those verbal directions are going to be too much and you might have to go to much simpler words if they stop understanding that, [and even] much simpler words plus a physical sort of cue, [like] “here raise your leg” and you sort of touch the back of their leg, to give them that cue. When that becomes hard then you have to take something else away to where it’s just that physical cue, maybe take away the verbal so you really have to look and pay attention to what’s working. When it stops working that’s when you know it’s time to change.

Mike: Yeah and is it good or bad to show emotion when you’re communicating with someone with Dementia or Alzheimer’s?

Jen:
Ah that’s a really good question, I don’t know that I’ve ever been asked that. Just kind of from experience I’m going to say it’s Yes you need to be able to control those emotions. I think the more positive you can be, the better, because that makes you feel more safe but you know if you’re honestly feeling sad or upset or you know you’re feeling a little lonely too especially if it’s a parent and you know they have that real parenting instinct. Yeah then then yeah feel free to be a human, you’re a human too – You’re not just the caregiver. Yeah and so being human together I think absolutely makes that bond. It’s a great question.

Mike: When I visited my mom last week, and [this] happens every time I visit you know she will say:
Why are you here?
Well I came to visit you and I wanted to visit Dad
Oh how is your Dad? is he okay?
Yeah he’s doing all right
Oh I haven’t seen him in so long
Mom he was here three hours ago

You know and it’s sad, you almost want to laugh but you don’t you have to control that or I do. I try to control and say yeah Mommy
and and I try not to correct her I just say

Yeah yeah you’ll see him again soon mom”

Jen:
yeah what she’s probably saying is
I’m lonely and I miss him
yeah in her mind, it’s been a lot longer but she’s not saying I haven’t seen him she’s saying
“I miss him and I wish he was here”.

Kim: What other things as the caregiver, or as the adult child, can we be doing to try to make our parent with dementia’s life as best as possible?

Jen: I think just being aware, noticing those small changes and not letting it get too far to where you are becoming so stressed out and so burned out as a caregiver that you are just out of ideas and you’re just you’re losing patience. It does take so much patience even if we’re doing it all right and it’s never always going to go [all] right even the best caregiver, the most patient is gonna have days where it’s harder.

Giving yourself a little grace too and like we just said you know remembering that you are human as well.
Just being aware and noticing those subtle changes and trying really hard not to take them personally. You know when they don’t remember who you are when you walk in, that’s one of those big ones. Right and just preparing yourself and knowing, kind of having a plan in place about when this gets hard here’s what I’m going to do next.

Mike:
Exactly. Yeah wow yeah. It’s not easy communicating with someone with dementia / Alzheimer’s but you have helped us tremendously with these tips Jen thank you so much

Jen: Thank you. Thanks for having me today.

Kim: It is really just really thinking about how might they be feeling or understanding how they’re perceiving it so much differently than they did five years ago 10 years ago, even maybe five months ago.

Mike: Yeah it’s a mindset you have to have and it helps to be prepared and planned ready for whatever it is you’re
discussing. If you have any other topics you’d like us to talk about please let us know Parenting Aging Parents

*This transcript is auto-generated. Please excuse any typos or mistakes.