Emerson – Alzheimer’s Association
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
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
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.