TALK TO ME
PLEASE TALK TO ME
Why write about having a conversation? Family and friends of a loved one with dementia often conclude that he or she is just talk “crazy,” “dumb,” or “stupid.” Yes, there is something wrong with the conversational functioning of those with dementia. Still most of those with dementia want to engage in conversation; there can be success if managed well. Let us respect the humanness that still is central to them; as humans, they want to interact with others, especially with their loved ones. Throughout her progressing dementia, Beverly has always attempted 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 people, expressing observations feelings, ideas, opinions, etc. Beverly has continued to express these aspects, though her her contributions are now limited. Early on, though, conversations were generally very normal except she increasingly lost her memory of what was said and was repetitive in her own talk.
After the early stages, a conversation with a loved one with dementia can be difficult. The process of a conversation becomes increasingly hard--over the weeks and months as the disease progresses. Earl they start to immediately forget what you have told them, such as asking a question you answered and then asking again within minutes. And again!! Then, as the disease progresses, the person 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.
We should remember, though, that there is more happening in the brain than is apparent on the surface. There is, until very, very late in the changes from dementia, some understanding and especiallya sense they have of what we feel, especially our feelings toward them. And they often have something to say, but struggle with putting it into words. Having a conversation with them is somewhat complicated, so having better conversations will require some adjustmentl.
Here are transcripts of conversations with her recently (Spring , 2021). She is now considered to be in the advanced stage of Alzheimer’s. She was certainly much more capable in conversation 18 months ago. Still there is something functional with her.
#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.
I have found the following strategies to work well with Beverly. First, set the stage with a calm quiet environment and avoid distractions, including noise, movement, bright lights, and changing lights. 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. Something very recent is usually not remembered. 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. Of course, Jen often plays in the 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. Stories of specific events from that past may be remembered and responded to. “We had so many wonderful trips to the beach. There was that time when…”. We often can’t know what they remember; still there is a positive feeling in that if the positivity is only in our voice.
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. I could say that she just came for music entertainment in the facility, or that I want her to play on her keyboard, or ask if she wants me to play for her.
Also their thinking is more concrete when the dementia has developed more. 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. You might talk about objects in their room. Play some recorded music that you think fits their taste and watch their reactions; then comment about the music and them.
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 both laughed for several minutes and I playfully said: “You think I’m funny,” etc. Likely the mood had nothing to do with what I said, 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 us 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. 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.
Her 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 it is important 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 patients talking about their experiences. 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 of course we do not have to fill all of our 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 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 and criticism.
Sometimes when we don’t understand them, we succeed by asking for a repeat or clarification; that should be said cautiously. 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, even when the understanding is a 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.
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 for the person with dementia, 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 and are likely to feel left out.
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 third party 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 third 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, such as entertainment, a recent meal, their loved ones.
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.