Alzheimer’s Disease - Ten Absolutes of Caregiving

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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’re very fortunate, today, to have with us, again, Fran Emerson, in charge of the Alzheimer’s Association in our area, as well as the surrounding area.  She is a veritable fountain of information on caregiving, Alzheimer’s, and positive attitudes and techniques in dealing with people with dementia.  Fran, one of the things I love is what you wrote to help people deal with Alzheimer’s.  We’ve discussed some of this previously.  But, one of them was ten absolutes:   never do such-and-such, always, instead do such- and-such.  I’m going to ask you to read these and then we’ll discuss some of them, because I think they’re very powerful for anybody dealing with Alzheimer’s.


Fran Emerson:  Okay, Sally.  Well, it’s great to be here again.  The ten absolutes are very important when you’re interacting with someone with a dementia. 


First, top of the list:  never argue, always agree.  Never try to reason with someone with Alzheimer’s disease, always divert the conversation.  Never shame someone because they failed in following an instruction, or something like that, but always distract them.  Never lecture; none of us like that, but reassure.  Never say, remember, but, instead, reminisce.  Never say, I told you, but just simply repeat.  Never say, you can’t, but just model what that person may be able to do.  Never command or demand, just ask.  Never be condescending, just encourage people.  Never force anyone to do anything, just reinforce what they’re doing.


I think these are so important when you’re interacting with someone who is struggling everyday to keep it together. 


Sally Smith:  Well, I really feel that is a mantra that should be at every check-in point on every Alzheimer’s unit.  It’s so simple, but we bring with us our own package, our own life, when we go to work, and it’s hard, maybe, to switch gears and realize that this is a different person.  One thing I’ve heard you say before is that a behavior always has a meaning, stay calm, know the person, and understand the disease.  Now, know the person, is that like their habits?


Fran Emerson:  That’s right.  If you look at it logically, how can you be a personal caregiver to an individual if you don’t know them?  Everybody is so unique, and everybody reacts in a very different way to any illness they may have.  And this is particularly so with a dementing illness.  If you see someone acting in a way that is challenging, or you can’t connect with, do some homework.  You know, what was that person like, what did they do, what was their job, what was their family background, what was their Achilles heel when they were growing up?  We’ve all got pet loves and hates, and little things, that make up our uniqueness.  I think knowing the person is one thing.  Understanding Alzheimer’s disease and what’s happening to the brain is the other.  And if you put those two pieces together, you can develop into a much more powerful and effective caregiver. 


Sally Smith:  So you’re really a detective, in a sense?


Fran Emerson:  That’s absolutely it, Sherlock Holmes.  Elementary, my dear Watson.


Sally Smith:  And, obviously, you have the patience.  That’s a quality I would like to have a little bit more of.  I know, dealing with my own mother, she couldn’t be rushed.  We couldn’t just figure it out right a way.  I mean, things took time, and I had to get on her schedule.  Do you think that most people that go into this work are more innately patient, and that’s one of the reasons they’re successful at it, or is that learned?


Fran Emerson:  I think there are two factors here.  I think some people are more natural caregivers than others, and we talked about that before.  I think that it can be a learned skill.  I think there are some people that will never even dream of going into the caregiving profession, and will always find it a struggle if Alzheimer’s happens to strike their family.  These people, you know, working in facilities, and family caregivers at home, have my utmost respect and admiration, because it takes that degree of patience and commitment.  But, you know, the best thing to do is to understand and accept that this is a disease where you are transformed onto a different planet, when you become a caregiver.  You’re not in your world, as you say.  You need to step into the world of the person that you’re taking care of.


Sally Smith:  Well, you know, one thing that I really appreciated on one of your lists is the therapeutic fibs and hip truths.  I find that quite fascinating, because the part where you say, never argue, I mean, you’re not going to tell them it’s Autumn, and not Summer.  I mean, what’s the point?  But, some people might have trouble with bent truths and therapeutic fibs.  Tell us how they can be your aid in times of trouble. 


Fran Emerson:  I think it’s important that whatever someone with Alzheimer’s disease says, however bizarre, however off-track you know it to be, it’s important to validate that person’s position, so that if someone in a facility is saying, I have to go home because the children will be home from school, it’s very easy to react and say, you’re children are grown up and at work now and you don’t have to go home.  You need to enter that situation because that person is anxious, they want to go home and see their small children; well, what are their names, tell me about your house, and divert the conversation.  You know, you’re accepting the fact that someone’s at that moment in time.  So, therapeutic fibbing, I guess it is.  But, what are you going to do, just spend your time arguing with your loved one, or a client in the facility?  It’s stressful for you and it’s stressful for the person with Alzheimer’s.


Sally Smith:  I love that phrase you used, entering the resident’s world.  And, really, that’s your job, and the best way of giving, of creating, as you say, a stress-free, happy, peaceful environment.  I wish you would close this part out by telling us, one more time, how you approach a person with Alzheimer’s if they’re having trouble.  I remember you suggesting that you don’t come up frontally.  I tried to describe that to somebody recently, and I think that bears hearing again. 


Fran Emerson:  It’s avoiding a confrontational encounter with someone with Alzheimer’s.  So, coming from the side, if you’re approaching a person, is important, so that you’re not confrontationally in front of them, and you’re not creeping up behind them.  And, calling them by name, introducing yourself by name, if they’re seated, getting down to their level, making sure you’re not towering over someone, making sure that the person doesn’t feel that you’re in their personal space.  That’s a real important thing.  If you’re touching someone, make that an unsurprising kind of connection, gentle and reassuring.  Body language and facial expressions are very important.  People can tell a lot by what you’re saying through your expressions, body language, long before you open your mouth.  Seventy percent of your first impressions of someone are actually visual, not verbal. 


Sally Smith:  Interesting. 


Fran Emerson:  They’ve done a lot of research on that.  And they’ve done a lot of research on people with dementia who are particularly sensitive to body language. You know, is this person a friend, or a foe?  Is this person going to hurt me, or is this a nice person?


Sally Smith:  And this goes back, too, to when we spoke about side issues that can affect things.  Some of them may not hear that well, so the visual becomes even more important.


Fran Emerson:  That’s really important.  You know, some people think a person with Alzheimer’s isn’t responding to them, so they repeat themselves, and what do they do?  They shout more loudly, which is counterproductive, because people with Alzheimer’s are not deaf.  They just take time processing. 


Sally Smith:  I see.  Oh, Fran, you bring such interesting insights into this.  Thank you so much for being with us again today.  Thanks to all our listeners too for joining us.  We welcome your suggestions and comments, always.  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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