IS THERE STILL A HUMAN THERE?

IS THERE STILL A HUMAN THERE?

            When we have an encounter with a dementia patient, it is quite natural to conclude that there is no longer a human or person present.  Except for the earliest stages, this person has no or strange responses to ordinary interaction.  There is often a blank facial expression to others.  And an apparent confusion about what is happening around them.   Even in the intermediate stage of Beverly’s dementia, others might have thought that there was “no one home.”   

And now, late in the process, as Beverly is now, all is much, much worse.   What can she do?  She cannot walk, she cannot make sensible talk any more.  It is often unclear what her emotional tone is, as she is just “out of it,” not at all in touch with what is happening.  The usual “How are you today,” which everyone understands results in no speech.  Activities that should produce something comprehensible, produce no effect.  And, when one looks at her, her eyes are often turned away, looking at nothing in particular, eyes glazed and unengaged even when one is talking directly to them. 

So, you say, this blog will be about trying to say that this is still a human.  How can you make that plausible?  How can I convince others to treat him or her as still a person, a human, as if there was still someone home?

            The justification for claiming humanness is not immediately obvious.  And, admittedly, my deep experience is with only one person, with Beverly.   However, I do not believe that she is an exception to the broader principle suggested by the points raised in what follows.  My observations of, and interaction with, many others support all of this.

            First there is such a basic social need expressed by most of those with dementia on an ongoing basis.  They often look at other people and make at least brief eye contact; they often respond to a friendly “Hi,” though not quite normally.  Nearly all of them will attempt to respond if a question is asked or a comment made.  On the phone with relatives and friends, Beverly regularly tries to respond (still at this late stage in her dementia).  Those on the phones often do not know it, as she can’t quite get her voice to function , though she is trying to do so.  From my view next to her, it is obvious that she is trying to formulate and speak something.  She does often smile and laugh at what others say and the laugh typically makes sense.  When with them, it is critical to monitor nonverbal behavior, especially facial response; there are many reactions, sometimes very subtle.

            It is significant that finding the right topic activates their responsivity.  The recent blog on “Unexpected laughs” make this clear.  To repeat a simple example (from April, 2022):  I was on the phone in her room with her and her brother Larry.  I told Larry that I had just returned from a volunteer activity delivering “Meals on Wheels.”  Larry said, clearly, to me, “You are a saint, David.”  Then to Beverly, “Isn’t David a saint?”  A long pause was followed by a distinctive “Maybe not” from her.  She understood that this question was directed at her and the import of the question was tracked at some level; maybe she did not connect it to the volunteer activity.  But she did grasp that Larry asked if David was a saint and engaged her “sarcasm button” to answer the question.  There was much happening that moved beyond what was typically observable.  This is not common, but happens many times.  One of the caretakers wrote, in response to the blog, that she herself had a “notebook full of stories like this.”

            In the interesting book The Alzheimer’s Solution, the authors Dean and Ayesha Sherzai argue that the dementia brain, even far along in Alzheimer’s still contains complicated networks of information in specific domains, information that appears to be lost but may be activated to consciousness by the right input, an input that connects to a motivation to recall by some specific stimulus.  They report a strong example of an Alzheimer’s patient who, in part as a consequence of a bout of pneumonia, suddenly moved from “stable, alert, and oriented” to completely unresponsive in every regard.  She was very musically oriented, having taught piano for over 60 years.  The medical residents had already demonstrated to themselves how completely unresponsive she was.  Then Dr. Dean Sherzai, her physician, first called her name and also got no response. Then, knowing her musical depth of knowledge, simply asked twice “Who is a better composer, Mozart or Beethoven?”  Following a considerable pause, she said, “What a stupid question.”  From there, continuing connection to music seemed to awaken her functioning and she eventually improved to her previous moderate Alzheimer’s condition.

            Beverly, too, has been regularly aroused by music, though not Beethoven and Mozart; more like pop and rock.  A playlist in her room is very stimulating to her, often bringing her out of great lethargy.  Until very late in the dementia, Beverly still played the piano by ear, loved to sing, and continued to create wonderful harmonies to songs being played by visiting entertainers.  And of course she danced and moved her body to the rhythms of music.  She cannot play the piano now as her physical body has failed.  She does not sing the words to songs, but still works at a melody.  She cannot dance either, but everyone notices her feet and legs and hands moving and her head moving, too.  Music is still in there and activates her.

Both her brother and a close childhood friend can engage her attention and reactions from stories of childhood.  And the staff regularly introduce me, when I visit, as “Here’s David” and she is livelier for a bit.  At this point in time (Summer 2022) she barely recognizes me, only by this naming and, I think, by my voice.  Still the domain of knowledge that involves our relationship can still be activated.  Earlier in the Summer, as I sat with her and held her hand, talking to her with no verbal response to various efforts, she suddenly said very clearly, ”I miss you.”  We cannot read everything into that, but it surely connected to our relationship, past and present

            I have previously been at her facility numerous times, earlier in the dementia, when Beverly and another dementia patient carried on a conversation with multiple exchanges.  The words spoken did not make sense, but the conversation continued with regular turntaking.  As the disease has progressed, such conversations are no more, as far as I can tell.  Still there is a continuation of turntaking.  A statement by someone (directly present or on the phone) directed at her will result in her effort to say something back.  Often the other person has said something complimentary, like “Your hair looks great” or has asked a question, like “How are you to today?”  She will then try hard to say something back, but simply struggles with articulation.  Or she will smile or laugh in response. 

            Nearly everyone follows the simplest of social rules related to moving about in the physical world.  They make space for someone to pass, wait for their opportunity when someone else is moving through a narrow space, etc.  And various social norms continue, often unnoticed as they are so automated.  I think specifically of the distance we maintain in face to face conversation, which is probably normally 15 -18”. I note an “exception proves the rule” case.  There was a man with dementia in Beverly’s facility.  He consistently got very close face to face, around 8 -10”.  It made me uncomfortable, but never felt threatening to me, as it was only this.  Others (staff and family members) talked about him as threatening—based, as far as I could tell, on this violation of personal space.  All others with dementia have maintained an appropriate distance.

            Many try to help others in their environment.  They will try to push someone else’s wheel chair, will be concerned and try to help when someone falls.  Beverly often tried to be helpful to others.  When someone fell or had some indication of harm, she wanted to intervene.  But she was clearly not the only patient showing this trait, as I observed this with many.  And some worked hard to protect others.  And before competent speech left, she verbally expressed concern about others.  One man (Steve) consistently defended any woman who was being insulted by another man (Bob).  (Note these are all people with dementia).   Bob rampaged with insulting talk about women.  When Steve heard any of that, he hit Bob.  I observed this happen more than once.

            Strikingly, many continued to live out some of their family and professional roles.  Many, many times I heard the request, made appropriately to a staff member, that “you have to let me get out; my child (or grandchild) needs me.”  They stated that their child was in the car waiting for “me” to come.  Beverly continued her Nursing, often wanting to help the Nurse give out medications.  And she consistently tried to be the Nurse who could help others with some difficulty they were having.  One man, who had been a contractor, regularly checked the doors, closing the ones that were set open along the hall.  He closed them, checked the latches, etc.  These are all, to us, odd in the circumstances.  Nonetheless they reflect the person they have been.

            And, of course, many different emotions continued to be expressed.  Anger and sadness, but more often happiness, were expressed.  The emotional system was more childlike, though.  An emotion, such as anger, emerged suddenly and unexpectedly and also went away very quickly.  And, almost always, I could make sense of how the situation stimulated this particular emotion.  I have previously admitted to my slow learning about what often stimulates anger; while the circumstances have an oddity, the reasons are not truly imponderable.  Criticizing them, disagreeing with them may quickly lead to anger, but these are not totally different than normal human reactions. 

            And there was generally the need to be physically touched and some remaining sense of appropriate touch.  To this day, late in Alzheimer’s, Beverly wants to hold hands, to be hugged, and makes the quick kiss to others she is close with.  A shoulder rub is always welcomed.  I have seen only one resident who did not want to be touched, which was likely a consequence of the sensitivity to sensory overload, a common characteristic of Alzheimer’s, in this case carried out strongly for touch sensation.  Again, the “exception” to the rule.

            And, perhaps finally, there is a remaining personality for all patients.  Each person with Alzheimer’s is still unique in their way of relating to others, of their interests, of general emotional tone, etc.  Sometimes, as family members report, it is a changed personality.  “He never got angry and threatening like this before.”  For others, it was “She is nicer and kinder than I ever remember.”  Each one of them is still a unique person in many ways.  And various special interests/hobbies/life loves continue.  One man had a skill in visual art, both professionally and in carving pumpkins for Halloween; he had pictures of many of those pumpkins.  He and several others continued to draw and paint.

            And finally, I argue that there is still consciousness, though in the latest stage of Alzheimer’s that seems to be gone. Still the late stage is generally a fairly short period of the Alzheimer’s time.   It is clear that consciousness is there in the earlier stages. Consciousness seems to become limited, starting at least in the middle stage of Alzheimer’s.  There certainly are these traits: disorientation, vagueness, and non-responsivity starting by the middle stage.  Yet, as described above, the right stimulus will precipitate a response.  And that response does, sometimes, reflect a complexity of “calculation” and decision.  In the middle stages, it seems that consciousness comes and goes; when the right stimulation comes, the specific network springs to life and “creates” a conscious being.  We have discussed a few of many available examples.

            Let’s consider the experience you may have when attempting to connect to someone whose dementia is farther along than the early stage.  Suppose you try to engage them with various efforts, ranging from “How are you feeling?” and “What have you been doing?” to questions about their children or spouse and/or about some interest they are known to have (music, movies).  But nothing elicits any genuine engagement, nothing at all or little more than “yeah” or something comparable.  Hopefully you would not simply decide that “no one is home.”  What might be limiting their response? 1) You may not have found the right topic, connecting to what remains in their memory as more salient or arousing.  Try a variety of topics; something unexpected may work.  2) And you may not have presented yourself and whatever you said in the most interesting way.  The process of engagement is comparable to engaging a young child.  First getting their attention is essential; you should attend to their visual orientation, facial expression, and even bodily cues.  Often it is helpful to hold hands.  Then your verbalization should be made with positive excitement.  3) Keep your words concrete and simple.  Questions should be for “Yes/No” or a simple concrete answer. 4) Their reaction may be relatively subtle; they often respond nonverbally as speaking is difficult.  5) Silliness, even gibberish may engage some laughter and open them up.  Our daughter Lori is expert at setting off Beverly for some laughing.  6) And finally they may simply be having a bad day; the variation of mood and functioning can be very high for those with dementia.

            Yes, there is a human there, one with feelings and emotions, with motivation to connect socially, and a brain with a range of information, but difficult to connect with.  Make the effort!