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.
Today, we’re very fortunate to have the director of the Charleston area Alzheimer's
Association, Fran Emerson.
Thank you for coming in and talking with us today, Fran.
Fran Emerson: It’s a
pleasure to be here, Sally.
Sally Smith: Well,
good. I have to tell our listeners that
I was completely blown away recently when I went to speak at a teaching day,
which had to do with the Alzheimer’s Association. I was really impressed by the practical
insights into how, day-to-day, to turn our way of looking at patients from the
way we would look at the rest of our world, to looking at a patient, or loved
one, suffering from these changes in the brain that constitute Alzheimer’s and
dementia. And it turns out that you were the author of that. So, in our next few podcasts, we want to
share that with our listeners.
One of the first pieces of the puzzle that I was most impressed
with was the practicality of behavior management. You asked these questions: Whose behavior can we change? Whose problem is it? Is it a problem? Let’s start with whose behavior can we change?
Fran Emerson: Well, I would
say that Alzheimer’s disease, or any related disorder, and the caring of that
individual who has that disorder is about the patient. This is what we tell caregivers. You know, as soon as you realize that this is
not about you, as the caregiver, and it’s about your loved one, then you can
see it through the eyes of the person who has the dementia. And if you see your loved one behaving in a
bizarre, often unusual way, we put quotation marks around that and say, that’s a behavior. A behavior is simply a reaction to a set of
circumstances that each of us exhibit throughout our lives.
For example, if someone is pacing around the house, is that a
behavior? Well, yes, it is a behavior. And people call that a behavior, particularly
in the long term healthcare industry.
But, whose problem is it? Is it
causing the person with dementia a problem?
No. Is it a problem for the
caregiver? Probably not. But we talk about behaviors, such as
wandering, as if they’re something we want to eliminate. Now, of course, we want to address it, if
there’s a safety issue. And the
Alzheimer’s Association Safe Return program can do that, of course.
Sally Smith: So, a behavior
is really only a problem when it’s a safety issue, or it violates someone’s
rights? If it’s just unusual, or out of
the ordinary, why fix it? And, yet, our
first reaction might be, we need to get this fixed because it’s so
aberrant. Is that kind of what you’re
Fran Emerson: That’s what
I’m saying. We want to fix it because
that person isn’t behaving in the way that they used to. And we have to remember that Alzheimer’s, or
any dementia, is a sickness of the brain.
It’s an illness that affects our functioning, the way in which we think,
the way in which we feel, the way in which we do things, so that if we do
something out of the ordinary, like put on several layers of clothes when we’re
inside the house, that’s a behavior, or so-called problem, or is it? And, you know, sometimes the caregiver can
de-stress themselves by actually looking at that in a different way: well, is it hurting my loved one? Is it hurting the person with Alzheimer’s? Is it hurting me? Why am I worried about this?
Sally Smith: Well, I loved
how Adelle Stanley, in Columbia, your
counterpart in Columbia,
had a wonderful way of saying that. She
kept saying, throughout this presentation:
ask yourself, so what? You know,
so what? It may be strange to me but,
really, ultimately, so what?
Fran Emerson: So what?
Sally Smith: I thought it
was very liberating, in a sense, because having learned, not through any books
or teachings, or classes, but through seeing my mother sink into this, there
were behaviors we wanted to change, and yet, really, now that I think back, so
what? So she wants to put on clothes,
take off clothes, wander? I think one of
the interesting points we’ve learned in our time together, on Age to Age, is that, often, it’s the
caregiver who is the most stressed out, and the person with dementia is,
really, in a little world of lala land; they’re not worried about it. Now, I guess there are behaviors in which
there is a lot of agitation, and that’s a different issue. That might be worth addressing if someone’s
When you say there are behaviors that do need to be changed, you
ask what that problem, or behavior, is related to, when it happens, where it
happens. What are the questions, when
you begin to pull the puzzle pieces apart to try to get to the root of why a
person is acting in a certain way, if it’s a behavior that needs to be changed?
Fran Emerson: We try to get
a sense of some sort of pattern. If
someone is, for example, getting very agitated at the same time everyday, we
look at what is happening at that time.
I tell staff, working in assisted living and skilled nursing facilities,
to look at what is happening: who is
around? What’s happening at that
time? Is it mealtime? What sorts of noises and environmental issues
are present? Try to unravel why
something is happening at a particular point in time. There’s always a reason for a so-called
behavior. There’s always a reason why
someone might be, for example, verbalizing very loudly, like shouting or
repeating themselves at a specific time of the day.
Often, it’s an attempt for someone with a dementia to
communicate. Because, you know, one of
the early losses in late, early-stage, or mid-stage Alzheimer’s disease is the
ability to verbalize what one wants and what one is trying to communicate. For example, if someone is in pain, that’s a
big issue. And, at the bottom of a lot
of so-called behaviors is someone trying to tell you something: I hurt.
I’m uncomfortable. I’m
hungry. I’m tired (particularly toward
the end of the day). There’s a sense
that I want to tell you something,
and that often translates into what we call, behaviors.
Sally Smith: Well, it’s
interesting to see that it’s not as random as you think. And I go back to the example that I had with
my mother. Sometimes it seemed random
but, actually, behaviors have a meaning and a reason. And I think that it’s very interesting to see
how you line up the questions you ask yourself about a specific behavior that
might need changing, and it might give you the tools to actually fix it and
de-stress yourself, because you’ve fixed an aberrant behavior that needed to be
Fran Emerson: That’s
right. And, you know, I can give an
example of a lady that called me. She
was caregiving for her husband, at home, with a diagnosis of Alzheimer’s
disease. He was, normally, a passive,
quite agreeable man, even during his illness, and suddenly he became very
aggressive and violent toward her. She
would call me, and it sounded like she was covered in bruises, saying that her
husband had never been like that and asking me what she should do. I told her that it may be something other
than the dementing illness itself. So,
she got him admitted to the Department of Psychiatry here at MUSC, and he was
diagnosed with a high-grade urinary tract infection. Now, UTIs can really throw you off, even if
you don’t have a dementia. But if you
have Alzheimer’s disease and you have something like a high-grade UTI, that’s
going to translate itself into some sort of unusual behavior. They treated the UTI and he went back to his
normal self. You have to kind of think
outside of the dementia box. It’s not just the disease, it’s other
Sally Smith: That is so
fascinating. Wow. What a great solution. I’m sure she was thrilled to find that there
was a solution.
Fran Emerson: Yeah.
Sally Smith: Thank you so
much, Fran, for sharing that with us.
It’s so interesting to hear, from your experience, these practical
tidbits that can help all of us. Thanks
to all our listeners too for joining us today.
We welcome your suggestions and comments on our website. This 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.