I’ve recently spent time with two elderly people who have dementia. Shawn is in the early stage, still able to live alone and take care of himself, although he is forgetful enough that he isn’t able to manage his finances and other personal business reliably. Susan is no longer able to live alone, forgetting to eat and bathe if someone doesn’t remind her.
When I was a kid, one of my grandfathers had dementia, although at the time, we called it “senility.” He often confused me with my mother or my mother with one of her siblings. He typically knew we were his relatives, but he had a hard time pinning down which one. It didn’t bother me at all because whether he knew who I was or not, he was genial and told good stories and sometimes gave me a dollar for ice cream (which was enough back then). I hadn’t known him before his dementia, so for me there was no loss and he just seemed like a happy—if confused—old man.
As I got older, I began to understand the losses people with dementia experience. Susan and Shawn have both expressed how frustrating it is for them to not remember things. They both often lose track of a conversation and will say something like, “What were we talking about?” or “Why was I telling you that?”
Susan recently described one of her childhood homes to me and then asked why she was telling me about it. “I asked you where you grew up,” I reminded her. She blinked at me blankly, clearly having no memory of me asking her that. “Oh,” she said, looking embarrassed.
In the past, I might have been tempted at that moment to either give her a more detailed recap of our conversation or to try to comfort her with a vague statement like, “I forget things, too” or “It’s ok, it wasn’t an important question.” But neither response would have been helpful.
The more detailed recap would likely not have helped her recall the conversation, which didn’t make its way into her short-term memory, and the details I provided might have just confused her more. The vague statements may have come across as condescending or patronizing or, worst of all, lies.
What I do now is remind myself that the purpose of the conversation we were having wasn’t to have a conversation; it was to connect. The information exchanged is irrelevant. Her remembering the conversation would matter if the information was important, but it isn’t. The connection is what matters, and so the way I make her feel is where I put my focus. If I make her feel like she is being patronized or lied to or placated, our connection will not be nourished.
So when she looked embarrassed that she forgot the conversation we were having, I put my hand on hers, made eye contact, and said, “Do you want to tell me more about where you grew up?”
My intent was to make her feel valued and interesting, and I think it worked. She told me several more stories about her childhood. When she said she hated being so forgetful, instead of brushing her concern aside, I used an active listening strategy to acknowledge her worry, saying, “It sounds like you are really frustrated with your memory. Do you want to talk about that?”
She did. She only said a few sentences about it, but when she was done, she thanked me. I think pretending someone’s dementia isn’t real can make the person with it feel unseen and that me giving her an opportunity to talk about it made her feel seen. That’s connection.
I take a different approach with Shawn. He is more likely to repeat stories or misunderstand or misremember events. He gets very agitated about the things he misunderstands. He recently became convinced that he has to collect the serial numbers of all his appliances or they’ll be repossessed.
When he told me he couldn’t find the serial number on his hot water heater, I kept myself from saying, “Nobody wants the serial number on your hot water heater!” Instead I asked a simple question: “Who needs the number?” He thought it was the bank. I considered explaining that a bank wouldn’t be interested in his hot water heater’s serial number, but anticipated that could lead to an argument, with Shawn trying to convince me that the bank did want it and me trying to convince him that the bank didn’t want it. An argument wouldn’t do either of us any good.
In this situation, my purpose was to calm his worries. I wasn’t sure how he got the idea that the bank wanted this list of numbers. With Shawn, I try to ask very simple direct questions and I couldn’t come up with a simple direct way to find out what his worry stemmed from, so I asked a different simple direct question: “Would you like me to talk to your daughter about this?” He said yes and let it go.
With both Susan and Shawn, I try to ask questions that do not rely on short term memory, like “How was your day?” or “What did you have for breakfast?” Instead, I ask more open-ended questions that prompt them to share whatever is on their mind. “What’s on your mind today?” is my favorite. I also like, “What are you thinking about?”
My mother died of early-onset Alzheimer’s just two months ago, and it was important for us, her children (we talked a lot about it!), to avoid making her feel sadder or more confused, so we adopted many of the strategies you mention here. My aunt, on the other hand, would bring pictures of her past life and say things “of course you remember Albert, look at him in this picture, you’ll remember the party you attended together…” and it just broke our hearts and our mom’s heart, too, I think, because it would remind her that there was a problem, that she was “not right.” It’s not always easy to know what the right thing is, especially when you, yourself, hurt, too.
Lucie, I’m so sorry for your loss. It must have been so hard to watch your mom struggle with memory.
This is helpful to me. Thank you.