PLEASE TALK TO ME

 

            Why write about having a conversation?  It seems like a trivial issue—maybe.  For some family and friends, their loved one is just “crazy,” “dumb,” or “stupid.”  Admittedly there is something seriously wrong with their functioning.  Nonetheless most of those with dementia want to engage in conversation.   Let us respect the humanness that still is central to their being.  As humans, they want to interact with others, especially with their loved ones. Through all of the developing dementia, Beverly has always shown the need to engage in conversations--with me and with others.  There is much we can do to make our times together happy for us all.

 

            As we all know, a conversation is an oral exchange between two or more, involving observations feelings, ideas, opinions, etc.  With Beverly, feelings and some observations are there; these exchanges are now quite limited, and have been so for a few years.  Early on, though, conversations were generally very normal except she might quickly lose her memory of what was said and be repetitive.

 

            And more generally with others with dementia:  Beyond those early stages, a conversation with your loved one with dementia can be difficult.  The process of a conversation becomes increasingly hard--over weeks and months with their continuing loss. Early in the development of dementia, conversation is normal, but they start to immediately forget what you have told them; you just answered their question about some particular information (Who is coming? Or When will that be?) only to have the question asked again within minutes.   And again!!  As the disease progresses, he or she with dementia is less and less able to express their thoughts. And it becomes increasingly hard to know what they understand of what you say to them.  

 

Despite these limitations, let’s not forget that there is more happening in the brain than is apparent on the surface.  There is, until very, very late in the process, a sense they have of what we feel, especially our feelings toward them.  And they (most at least) have something to say, but struggle with putting it into words.  The process of having  a conversation with them is not complicated, but it demands some adjustments to our habitual ways of having a conversation.

 

            Here are transcripts of conversations with her recently (Spring , 2021).  She is now considered to be advanced Alzheimer’s.  She was certainly much more capable in conversation 18 months ago.  Still there is a little something there with her responses.

 

#1

David:  I am glad to come to see you.

Beverly:  Yeah

D:  I suppose you might want to run me off.

B:  Yeah.

D:  (Fake crying)

B:  (Big laugh)

 

#2. D:  Well, I’m glad I had the picture made so you could see it here.

B:       Yeah

D;  So what have you been doin?

B:  People..people..(unintelligible)

D:  Yes, they do, huh?

B:  (unintelligible). See you.

D:  I see you.  I see you.  I’m here to see you.

D:  What have you been doin?

B:  (Unintelligible)

D:  Yeah, I do.

 

#3 D:  You tired?

B:  Yeah

Long pause

D: Yeah

B:  This, this is the.  It is (unintelligible)

D:  Yeah

B:  This is

…

D:  (Noticing a look on her face). Are you puzzling about something?

B:  (Pause). No (somewhat emphatic)

 

#4 I had been with her for 15 or 20 minutes and she suddenly said this:

B:  Who is this person?

D:  It is me, David

B:  Yeah

 

 

We can speculate about what she understood of my comment and fake cry.  Maybe her “yeah” to wanting to run me off was just a repetitive answer.  But I felt that she understood it because of what followed.  She seemed to understand something about the “fake” in my fake cry.  A real cry would not result in her laughing.  Generally it is clear that “Yeah” is her ready response; it was consistently very quick. She does occasionally utter a “No,” as in the last of # 3.   And maybe she understands some of what I say. Otherwise, there are a few words here and there, but no complete idea that becomes intelligible.  The last one (Who is this person?) is a puzzle; it does not seem to be in jest and is a complete question, though odd.  Perhaps it was repeated as a stock phrase rather than newly created.

 

            I have found the following strategies to work well with Beverly.  First, set the stage with a calm quiet environment with few distractions (noise, movement, lights not bright, not changing).  Maintain a calmness in your actions and voice.  And use their name often, and use your own, as well as the names of others of significance to them (such as children).  Of course, stick to simple ideas with short sentences.

 

            Talk about who they are, who you are and events that have happened between you.  I can always mention our children and get a response.  Or grandchildren.  Or her siblings.  Events that happened recently will likely be lost to memory, such as eating breakfast.  In a later part of Conversation #1, I asked if Jen had played music this morning.  She immediately said “Yeah” though Jen did not play that morning.  The people and activities of years ago are more likely to be remembered.  “You were a great Nurse” is something worth saying to her, and it is true.  And, of course, compliments of all kinds are worthwhile—hair, clothes, and their happy smile.  And those great aspects of their past.  Try stories of specific events from that past, too.  “We had so many wonderful trips to the beach.  There was that time when…”. We often can’t know what they remember, but there is a positive feeling in that.

 

            And, of course, you can suggest other topics of conversation to them, based on what you know about their interests, whether it related to hobbies of theirs or their work history or travel.  I always bring up music with Beverly, suggesting that she just came from music, or that I want her to play on her keyboard, or ask if she wants me to play for her.

 

Keep in mind that their thinking is more concrete when they are farther along with their dementia.  Early in the process, bring pictures (of people they know, especially of children and family) and talk about those in the pictures.  Bring books or magazines with pictures.  Earlier, these activities were useful for Beverly.  Now her vision and thinking are much more limited.  Look at objects in their room and comment on them.  Play some recorded music that you think fits their taste and watch their reactions; then comment about the music and them.

 

And the reminder:  Keep on a positive emotional mood.  Joy in the moment (a previous blog) is great for all.  Very recently, I went in Beverly’s room and said “hi” and she simply started laughing.  We maintained that for several minutes by playfully saying “You think I’m funny,” etc.  Probably the mood had nothing to do with the word, only with tone of voice.

 

Beyond topics of conversation, there is a lot to managing a conversation.  It is essential to patiently give them time to respond—often for an uncomfortable delay.  This may seem obvious enough, but it is quite difficult to carry out.  Of course, pausing is easier in a two-party conversation where you can wait and others aren’t  jumping in to keep the conversation going. I remember various occasions with several people present when she repeatedly tried to enter the conversation, but she was just too slow to say something at the point when it was relevant. Someone else moved the conversation along.  She was repeatedly cut off, so I finally said at one of those junctures:  “Let Beverly say what she is trying to say.” Then she did get to contribute.  These were not uncaring or poor-mannered people; they were simply having a conversation in the way we habitually do. Before Alzheimer’s, she was always quick in any conversation.  T

 

Now the answer to a Yes/No question can be relatively quick, but otherwise planning a sentence is a big effort as the disease progresses.  Later in the process, it seldom gets beyond two or three words even when there is time to plan. And you should also work hard to avoid interrupting them; that is hard to do too.   Just be patient!

 

Even early in the dementia, there are often long delays just to find a specific word.  I recently heard a panel of several with Alzheimer’s talking about their experience.  Delays to find a word was a major topic. They were frustrated about trying to find the word, but it was nice if others let them succeed if at all possible.  One of them mentioned their spouse helping sweetly by asking:  “Is this the word you want?”

 

            And there is the reality that we do not have to fill all of those moments with continuous talk.  Being present to him or her may involve nothing beyond quiet presence, holding a hand or arm gently for a time.

 

            Later in disease progression, they still talk, but it is often “word salad.”  Even if you do not understand what they have said, you can almost always help by saying “Yes,” “That’s right,” or something similar.  Even “I understand” when you don’t!  This is illustrated in the transcript. And linked to this is the concept that it is important to avoid saying, “No” or “That’s wrong” or even “I don’t understand.”  As has been discussed in previous blogs, it is almost always better for us and our loved one if we avoid disagreement.

 

            Sometimes when we don’t understand them, we succeed by asking for a repeat or clarification; make that move cautiously and avoid doing it a lot.  It might simply be “say that again” or “what did you say?” With someone else, we might be more confrontive by telling them to “speak up” or “be clearer” but that is not best with those with dementia.

            

            The difficult, but often necessary move, is to think or pretend we understand them (when the understanding is a guess, even a wild guess).  As is apparent in the transcript above, she will start a sentence and never really make her point, which often dribbles off into incoherence.  Fill in what you think they were trying to say and/or create something that follows from it.  If the word “Mother” is said by Beverly, I will talk about how I have been thinking about her Mother, how we will get a flight to see her Mother soon and take her out for a meal, etc. (None of this is true since her Mother died a number of years ago.). Creativity is an asset here.

 

            And notably the key to most conversations is to understand their emotions and to deal with how they feel.  You can support that happy reaction that they have.  And you can help reduce the sad or angry reaction. Their distractibility makes it easier to change it all by moving away from their sadness toward something to laugh about.

 

            And the remarkable (almost obvious) failing we all will show;  we assume they don’t follow what is being said and sometimes talk about them in front of them.  This is an awful experience, even today, for Beverly.  If you have been around someone with dementia and never done this, that is impressive.  It is such an easy thing to fall into doing.  But don’t talk about them as if they were not there.  They understand something about what is happening.

 

            Then there is the remarkable process of “scaffolding” a conversation with your loved one.  This term has been used in child development in reference to how an informed parent of a young child can help a 3rdparty have a great conversation with the child.  It amounts to managing the conversation in various ways, both. being an interpreter of what the child is trying to say, and of clarifying for the child what the 3rd party saying to the child, repeating a statement with simplified vocabulary and sentence structure.  Management of a conversation is very valuable when it involves a person with dementia; surely it is more difficult with dementia than it is with a child, but scaffolding is useful.

 

            So if you are close to the person with dementia, scaffold the conversation they have with another visitor.  Or hope that one of the Caregivers or Nurses will do that for you if you struggle with a conversation.  Obviously it helps if the scaffolding person knows him or her well and/or knows about particular conversational material (entertainment, a recent meal, their loved ones, etc.) that can be in the conversation.

 

            We should continue to be aware of how important human interaction is, even to people with dementia at an advanced stage.  This is a significant aspect of their humanity.  Engage them in conversation whenever possible.