Alzheimer’s Disease – Behavior Manifestations

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Guest:  Fran Emerson – Alzheimer’s Association

Host:  Sally Smith – Author/Resource literature on age-related disease and healthy aging


Sally Smith:  Welcome to Age to Age.  I’m Sally Smith.  Let’s talk.  We have Fran Emerson with us today.  Fran is the Charleston area program director for the Alzheimer’s Association and, as such, is in charge several districts around Charleston.  She has wonderful insights from a long career in dealing with caregiving, dementia, Alzheimer’s, and that whole world, which is what we are hoping to help everyone with in our Age to Age podcast.


Fran, one of the things we talked about were common behaviors associated with dementia and Alzheimer’s.  We know that the brain changes drastically in the area of temper and personality in an Alzheimer’s patient and certain common behaviors come out.  I’ve heard you mention wandering.  We know about agitation, anxiety, things like this.  What are some of these common behaviors, and what are some ways that they might be affected by changes in the brain, fatigue, and other outside issues?


Fran Emerson:  Well, let’s take the wandering, to start with.


Sally Smith:  Okay.


Fran Emerson:  It’s strange that when people are diagnosed with a dementing illness, we start to use different language about what they’re doing.  All of sudden, instead of observing someone going for a walk, or whatever, we say that they’re wandering, and we start to panic.  And, of course, that’s okay, because there are safety issues associated with people with Alzheimer’s wandering.  One of the symptoms of Alzheimer’s, and one of the manifestations, is that the judgment of that person is impaired.  For example, when they want to go out walking along the sidewalk, they’re judgment about when it’s safe or not to cross the road, or that sort of thing, is something we have to keep in mind. 


But we also have to recognize that just because you have a diagnosis of Alzheimer’s, it doesn’t mean you’re doing things without a purpose.  If someone is going for a walk or, as we say, wandering, if they have a diagnosis, they’re going somewhere, and they have a purpose.  Now, whether that purpose is to be out in the fresh air and going for a walk, or needing to go home, going home is often the motivation of someone with Alzheimer’s disease.  That home may be a home that existed 30, 40 years ago.


Sally Smith:  I don’t understand some of the terms.  We’ve talked about sundowning, what is sundowning?


Fran Emerson:  Sundowning is a term given to the manifestations of Alzheimer’s disease, or a dementia, which often occur toward the end of the day.  People may become agitated.  They may exhibit behaviors that they have not exhibited during the day.  They may make incomprehensible verbal noises, or any other things, at the end of the day.  Sundowning often occurs sometime, like, after 3:00, as you get toward the end of the afternoon.  Into the early evening, people become anxious, disoriented.  When you look at sundowning, it’s really that people are tired.  And if you take someone with Alzheimer’s disease, or a dementia, you have to try to get inside that person’s mind.  Here they are.  They’ve spent the whole day struggling to keep some sense of normality, trying to make sense out of the day, trying to just function.  I think about myself.  I go to work and, sure, by the end of the day, I’m pretty tired, and a person with dementia is going to be tired.  So, when someone is sundowning, they’re simply exhibiting signs of tiredness. 


I have a little story that I want tell.  I was talking to a woman with an early diagnosis of Alzheimer’s disease, a very smart lady.  She was willing to share the experience of her illness.  I asked her what it felt like.  She told me not try to having a conversation with her after 3:00, on any day.  She told me that she’s just tired and wants to sit.  She said that it’s like a curtain comes down.


Sally Smith:  Wow.


Fran Emerson:  She said that she just wants to be quiet.  And I think that is a very good explanation of what sundowning might be.


Sally Smith:  Well, that’s interesting because I think so often we think that we want everyone to be happy.  We want them to do phys ed.  We want them to go to play time.  We want them to go to chapel.  We want them to do all the activities.  And maybe sometimes they just want to sit there, and it’s okay.


Fran Emerson:  Yeah.


Sally Smith:  I love that.


Fran Emerson:  Yeah.


Sally Smith:  Now, we talked a little bit about rummaging, pacing, wandering, what about shadowing? 


Fran Emerson:  Shadowing is a term that we give to people with Alzheimer’s disease, or any dementia, that want to remain close to a particular person.  This often occurs with a spouse, caregiver.  A wife, for example, may say to me, ever since my husband’s been diagnosed, he just doesn’t leave my side.  She can’t go to the bathroom.  She can’t go to the kitchen.  He’s there.  She turns around and he’s right there, right at her elbow.  She’ll ask what she can do about it.  So we’ll talk about whether that’s a problem.  But, you know, a person who has had a diagnosis knows that something has happened. 


Now, if I were to be diagnosed with a dementia, I would feel very vulnerable, very anxious.  I would need to be close to the people that I’m closest to now.  This gives them a sense of reassurance and a confirmation that they’re not alone.  They need to see the person that they love and trust.


Sally Smith:  Which you can really understand.  It’s like a small child. 


Fran Emerson:  Yeah.


Sally Smith:  Security.

Fran Emerson:  It’s security.  And it gives that person a sense of comfort.  People will say that it drives them crazy, every time I turn around, he’s there, you know.


Sally Smith:  What about this perverse behavior, where they just want to be perverse.  You have a lovely, long word for it.  Is that a common behavior?


Fran Emerson:  Perseveration.  Perseveration is a term given to repetitive behavior.  Someone with a disease who is persevering in saying something, doing something, for example, I’m hungry, I want to eat, I’m hungry I want to eat or, I want to go home, I want to go home, I want to go home.  That’s a repeated request or statement from the person who just wants to keep repeating it.


Sally Smith:  So, if you were solving that puzzle, you’d try to solve the puzzle of what they’re trying to do, or is not even that they are thinking so much about what they’re saying as much as they’re just repeating it without meaning, and you just have to let it go on?


Fran Emerson:  Yeah.  I mean, if that person is not agitated, and not anxious, about anything, but they’re just simply repeating the same phrase, or the same word, is it a problem for the person?  Is it a problem for the caregiver?  Probably not.  And if it’s not outrageously encroaching on anybody else’s well being, like in a facility setting, I would say just leave it.


Sally Smith:  Mm hmm.  It’s back to our old favorite words, so what?


Fran Emerson:  So what?


Sally Smith:  But when you have something like this other, paranoia, suspicion, now, that would seem to be an unhappy behavior, whereas hallucinations, delusions, you can’t fix those.  But maybe suspicion, paranoia, you feel like, maybe, you could fix, or is that another so what, so I feel paranoia, so I feel suspicion? 


Fran Emerson:  You know, I was associated with a number of dementia facilities in the state of Delaware and was able to observe some of the residents who felt that they were vulnerable to someone else’s actions.  And I guess that’s what paranoia is.  I always understood that you have to validate whatever that person is feeling.  If that person feels that their children are out to take all their money, you know, I often used to sit down with a person and ask them to tell me a bit more about that.  I would ask them to tell me a bit about their children.  I’d ask the person what their children are like.  And, often, if you enter into a conversation about what someone is feeling, in the sense of being under attack, or paranoid, you can usually move that conversation to something more positive. 


It’s a question of validating.  It’s no use saying to someone, oh, don’t be silly, that’s not going to happen.  You’re on a high road to nothing.  You’re not validating what they’re saying.  You’re not forming a relationship with them.  You have to step out of your concept of things and into theirs.


Sally Smith:  I love when you say forming a relationship with them, because that’s another paradigm that people don’t mix with the care of someone with dementia and Alzheimer’s, that they are still able to form a trusting, some sort of a connect, relationship with you.  They are able to, as we know, to some degree.


Fran, thank you so much.  The common behaviors and how they’re seen through your eyes, it’s a wonderful tool for people to be able to say, so what?  You know, a lot of this is, so what?  So, thank you very much.  And thanks to all our listeners for joining us today.  We always welcome your suggestions and comments on our website.  This is Sally Smith, Age to Age, saying good-bye and wishing you courage and joy on your journey.  We are all connected. 


If you enjoy listening to Sally Smith, you can buy her book, The Circle.  It’s the story of how she personally responded to her mother’s journey with Alzheimer’s disease.  It’s a wonderful gift of hope for anyone with a parent with dementia.  Just click on Sally Smith’s name under the Health Professionals tab on the Podcast home page.  All profits support research at the Center on Aging.  Thanks.

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