THE UN-PERSON

            THE UN-PERSON

            The natural reaction, beginning from early in the dementia, is to interact with her (or him) as an un-person (or at best as a child).  There are several components to this mistaken interactive approach.  And clearly everyone does some of these at least some of the time.  On the one hand, the Un-Person is partly or largely gone in terms of communication and thought process.  Still there is a human there, one with human emotions and motivations, especially in relation to interaction with others.  And they still have social intelligence far exceeding the verbal and rational abilities, including a sensitivity about how others hers react to them.

Here are examples of what I saw over and over from friends and relatives, certainly by the time she was mid-stage with the Alzheimer’s process.  

At this point in time, Beverly has been diagnosed several years before, but only had some memory difficulties

Jane (pseudonym)arrived at the house, not having seen us for a few weeks.

Jane:  Hi, David.  Hi, Beverly.  How are you?

Beverly:  Hi.  (hesitation). Uh, fine, doing fine.

Jane (turns to me):  So, how is she?  Is this progressing?  What has happened since the last time?

Me:  Oh, about the same.  No new difficulties.

Jane (still talking to me):  She looks great.  Does she understand anything?

Me:  Yes.  Same as always.

Jane:  So what does her doctor think?

Me (finally turning this off):  Beverly wants to say something.

Jane (turning to Beverly):  Oh, you are doing so well.  You are such a cutie. (exaggerated speech with emphasis, high pitch, and sing-song tone)

Beverly:  (slowly). Thanks.

Jane:  So long since I have seen you. (with continued exaggerated pitch, etc,)

Beverly:  Yeah.

Jane:  Remember where we were last month? (Ditto)

Beverly:  Yeah.

Or, from a Caregiver in a facility:

“Honey, we are ready for a shower, aren’t we?”(high pitch, exaggerated tones)

“Come on.  Let’s get the clothes off for your shower.  Come on. You can help.  Hurry up. We don’t have any time.  Just help me.  Pull off your shoes…”

I was reminded of this issue after a conversation with our great friend Dallas, who interacts effectively with Beverly, even in this late stage.  On the phone, he talks directly to her much of the time, talking to me much less (which is best).  The talk was necessarily limited in terms of topics and ideas, but he always intended to engage her.  There was no “baby talk” tone of voice or expressions in that style.  He talked to her about her, what she was feeling, about times in their childhood.  When he talked to me it was about me, not her.  He did not ask me, in front of her, how she was doing, etc.

            The contrasting, more natural, more tempting style shown earlier is based on the assumption that the brain is so damaged that there is no one there anymore; or early, that this person is there in a very limited way.  We treat those with dementia as not there, or as childlike because of their difficulties. 

            There is a large research literature on the style of “baby talk” (called Elderspeak by some) exhibited by family caregivers, employed caregivers in Nursing Homes & Memory Care, etc.  And there are marvelous anecdotal reports, such as that provided by Patti Davis in her book Floating in the Deep End about her caregiving for her father, former President Ronald Reagan.  A new doctor came to visit about Reagan’s care.  “…he greeted my father in a loud deliberate tone, slowing down his words as if he were speaking to someone who didn’t understand English…He then proceeded to talk about my father [to her] in third person, as if he wasn’t in the room.”  (p.51)  Then she noticed that Reagan was staring at her and she knew what Reagan was thinking, which was what she was thinking, namely that this was a terrible way to treat someone.  When she suggested to the physician that he should talk to Reagan since he was sitting “right here,” the response was that: “He doesn’t understand what we’re talking about…Cognitively he can’t understand.”   The doctor assumed that Reagan was not there anymore.  This answer was totally wrongheaded.  Her mild confrontation of the doctor about this behavior was totally ignored.  Wisely, the doctor was never invited back.

            And it should also be noted that several of the practicing Neurologists who have written about patient care make a simple recommendation about how to manage a medical visit for the dementia patient and caregiver.  When the patient and caregiver first arrive and after initial greeting, they should be interviewed separately.  The physician needs a report from the caregiver about how the patient is functioning, but not a report made in front of the patient.  Having that discussion with the patient present is disrespectful; and, as well, the report will be flawed by the patient being present.  Later the patient and caregiver meet with the physician together, of course.  As I remember, that was a flaw I was aware of in some of our meetings with a Psychiatrist; we were both there.  He talked mostly to her, but it still became my turn to report on how she was doing. 

            The bottom line involves several important points:  The “baby talk” and of talking about them when they are there is demeaning and is so perceived by those with dementia.  Beverly today still has enough social intelligence to be aware of this exclusion from a conversation about her.  This is a patronizing way to talk to anyone.  Beverly, even now in late stage Alzheimer’s, has retained enough social intelligence to recognize the patronizing.  She does not produce coherent speech, but she knows “damn well” how someone is dealing with her at an emotional level.  We must show respect for their remaining humanity.  The use of Elderspeak typically reflects an assumption by the speaker that the person they are talking to or about is incompetent.  Yes, there is a level of incompetence with dementia, but we do not need to slap them with our assumption. We should still show respect for Beverly and for others.  That is not to say that we can succeed by speaking as we would to every adult.  There should be accommodation to their functioning, but not over-accommodation. And the accommodation needed will change as dementia brings poorer function.

            To simplify somewhat, there are two general seemingly worthwhile purposes of speaking this way to dementia folks, as well as lesser purposes, as demonstrated by Resgan’s visiting physician.  The first one is about control; I need to get you to do or participate in some activity, such as changing clothes.  These can be very directive commands and it is likely helpful to soften the order, such as, “We should wash our hands” or “Can you help me take off your shoes?”  And it will help with dementia folks to keep the sentences short and simple, in terms of sentence length, vocabulary, simple grammar.  And, most of all, we should provide concrete directions that are broken down into one step at a time.  Such changes are more likely to be effective than more standard speech.  Still there can be an excess of direction that, in itself, creates resistance.

            The other is to show care for the person; some people assume that this is reflected: by calling the person “cutie pie;” by talking in high pitch, “baby talk” with exaggerated intonation and loudness, by the speech register we would use to a baby.  Even “baby talk” words like “wuv”(for love) or “doggie” or excessive use of repetition (“Bye bye.  Bye bye.”) are in this category.  These changes are the ones most likely to be patronizing and so received. 

            And there is much research evidence that “baby talk” is likely to result in withdrawal and unhappiness, even aggression.  And that it is likely cause some resistance to whatever is needed, interfering with the kind of control needed.  As with humans generally, if you are patronizing and disrespectful, they are less likely to cooperate. 

            Let me mention Beverly’s physician again; Dr. Fehlauer has such a magical way of engaging his patients, sitting down with them and talking face to face.  They are still humans and he knows how to respect them with his style of interaction.  It is no surprise, as discussed before, that the staff (Nurses and all) characterize him as the “dementia whisperer.”

            Obviously there are individual differences in how individuals react to such speech differences, in part as a function of their own style and in part as a function of their relationship with the other person.  Generally, though, people (including those with dementia) would rather not be reacted to as if they were an incompetent baby.  They are already struggling with their own feelings of helpless, loss of control, and anxiety.  Don’t remind them by making them into “babies.”

            It must be acknowledged that following these rather simple rules is hard to do consistently.  I still have phone conversations with others, like her brother, where there are other topics that involve me and him, but not her.  Still we both work at avoiding talking about her while she is there.   Also it is valuable avoid long spells of talking about other matters, as though she was not there; rather we try to steer the interaction back to her.  Still there is no doubt that, at this stage, she does not keep up with the conversation very well, so we have to deliberately bring her back.  And there is the further problem that she is very slow to be able to produce any utterance, so patience is necessary.  And since what she says rarely makes sense, we can help them by affirming what they say or creating a following remark.  We will not be in such a conversation for long periods, but it is affirming to them as humans to give them their moments.  And don’t forget the importance of making “joy” for all, creating laughs often, even if by silliness.

All of the elements that are “bad” practice are irresistible in live interactions.  At the least, carry forward these conclusions:  1) Do not talk about the dementia person while they are there listening.  2) Do not fall into “baby talk” with the high-pitched, exaggerated, sing-song tone, and baby words. 3) Bring them into the ongoing interaction for the time of your visit or phone call; be patient and joyful.  Show your loved one the respect they still deserve.  For certain, when you fallen into one of these “bad” traps, as you certainly will, back up and correct the process ASAP.