Alzheimer’s Disease – Accepting Changes In Behavior

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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.  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 saying?


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 miserable.


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 fixed.


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 things.   


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.

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