How to talk to a loved one who has Alzheimer’s disease or another type of dementia
This story is a partCNET’s deep dive into the infinite complexity of the human brain.
I will never forget the last real conversation I had with my late mother-in-law, Grace. She had Alzheimer’s disease for several years, and making calls on her smartphone became difficult for her. I was so surprised to see her name pop up on my screen, calling me on a random Thursday night in the fall of 2021.
“Do you watch 60 Minutes?” she asked.
I paused. I hadn’t watched the newsmagazine show in decades, but I knew it aired on Sunday nights, not Thursdays. I also knew how much Alzheimer’s confused my mother-in-law.
Before her illness, she was always up on the news and had strong opinions on politics – she even campaigned for John F. Kennedy when he ran for president in the 1960s. She kept her mind active well into her 80s by doing daily crossword puzzles in her favorite newspaper, the Los Angeles Times, and she loved to talk to me about new books.
But Alzheimer’s took away her focus, and often her words. I knew how difficult it was for her, how frustrated she became to the point of tears when she couldn’t understand herself. If she thought she was watching 60 Minutes on a night when it wasn’t on, I wasn’t going to agree with her.
“Yeah, I watch 60 Minutes!” I said immediately.
It was the right answer. In a happy and satisfied voice she said, “They are a nice couple, aren’t they?”
A couple? Who was the couple? Mike Wallace and Morley Safer? Aren’t they dead? It didn’t matter.
“Yes!” I said.
“Okay, I’ll let you go now,” she said, and the call ended. Grace died about a month later, aged 85. She had moved from her two-bedroom condominium in California to a beautiful assisted-living facility just eight months earlier, barely getting a chance to enjoy the hair salon, outings, and other perks.
Her health deteriorated rapidly and she soon needed round-the-clock care. We moved her from the hospital to a care and nursing home run by a compassionate Russian doctor, and she only lived there for a week before she passed away.
I am grateful every day that I agreed with her during that phone call. In her world, she was watching “The Nice Couple” on 60 Minutes on Thursday night, and I knew enough about her dementia to try to enter the world she lived in.
‘I’ve got your back’
Diana Waugh knows how difficult it is to talk to someone with cognitive loss, be it Alzheimer’s disease, Lewy body dementia, or another condition. Waugh is a veteran nurse and board-certified dementia physician. Her job, Waugh Consultingfocuses on providing caregivers and family members with tools to communicate with loved ones suffering from dementia.
But Waugh didn’t always know how to do that. Her birth mother, Iona Kiser, suffered from dementia and died in 2008 at the age of 95.
“I did everything wrong,” says Waugh. “I was less than successful with her.”
Since then, Waugh has published a short book, I’ve been thinking: Unlocking the door to successful conversations with loved ones with cognitive loss. She talked to countless caregivers, and has produced numerous videos explaining its approach.
Waugh says he can sum up his philosophy on talking to them in one phrase: “I’ve got your back.” She also has strong feelings about the word “no” — she says caregivers shouldn’t use it. And it encourages caregivers to redirect potentially distressing conversations to focus on old memories that their loved one can easily discuss, rather than trying to quiz them on new information that their brains simply can’t access.
Work won’t give her back that time with her mom, but she helped a lot of other people along the way.
Sheila Qualls’ 86-year-old mother has dementia, and Qualls worked with Waugh on how to better communicate with her mom.
“I miss my mom, but Diana taught me how to ‘get to her,'” says Qualls. “Her techniques made a huge difference in how we responded to my mother and changed our lives.”
The short-term memory drawer has no bottom
Waugh explains that your loved one’s memory has two “file drawers”—short-term and long-term memory. Items in long-term memory are generally still accessible. But the file drawer that is meant to collect short-term memories is bottomless. Memories just can’t stay constant.
“Well if you ask [a person with memory loss] to go to lunch with you tomorrow, they put that in the short-term drawer [and it’s forgotten]” says Waugh. “You show up, they’re still in their pyjamas. A smart person says, ‘Let’s do it.'”
A person with dementia can’t tell you how they feel today, Waugh explains, because that involves short-term memory. But I can tell you “what it was like when they hurt their knee at 40”.
Tap into long-term memory
That’s why Waugh encourages caregivers to use their loved one’s long-term memory whenever possible. Her slim book has numerous workbook pages where she encourages people to write down memories they can take with their loved one. What did they like to try? Listen? Touch?
Always have three stories ready, Waugh tells clients, and then use them to keep the affected loved one talking. Bring up those old memories and encourage them to talk about those things.
Qualls says this tactic works.
“My mom might not remember who I am, but when I start talking about her childhood or childhood experiences, she can tune in right away,” she says.
It can also be helpful to show photos to your loved one, but “make sure they’re old photos,” Waugh warns. A new great-great-granddaughter may be cute, but a person with cognitive loss is unlikely to have any idea who the baby is.
Redirection and redirection
Waugh tells the story of a woman who moved her elderly father from Nashville to Houston and worried that he would want to return to his familiar barn, which was now several states away.
In such a scenario, instead of telling him no, that his beloved barn is gone, Waugh says caregivers should calmly use the barn as a jumping-off point to get the man to talk.
“Say, ‘I was thinking about a racehorse you had,'” Waugh says. “And when they start [talking]let them go.”
Qualls also found this method valuable.
“Diana also taught me how to answer questions when my mother asked where my father was,” Qualls said. “Divert and redirect. Works like a charm. Diana taught me to enter my mom’s world instead of trying to bring her into my reality.”
Seizing the car keys
Many people first become involved in cognitive loss when they realize that their loved one can no longer drive safely. But how do you get them to hand over the keys? You might be tempted to lie and say their car broke down.
That doesn’t work, says Waugh. If a loved one is early in their cognitive loss, “they’re going to call AAA to fix that ‘broken’ car.”
Instead, she suggests telling them about a scary incident you recently experienced on the roads or claiming you recently got lost while driving. Stories like these can strike a chord with someone who is almost certainly starting to notice problems. You may also be able to convince them that a family member needs to use their car for a while, just so you have an excuse as to why it is suddenly unavailable.
Here’s what you should never say
Waugh encourages caregivers to avoid one word: no.
“‘No’ doesn’t do any good,” she says, explaining that the word only makes a loved one angry. If you can divert the conversation instead, the person will likely forget about the diversion in five minutes and be happy to move on. But if you make them angry by telling them “no,” they’ll be angry for the rest of the day, she says.
Waugh understands why frustrated caregivers might be tempted to say no. Their loved one may be insisting that they have to come to work when they haven’t had a job in years.
By saying “no,” the caregiver hopes, she says, to bring the person back to reality by denying their “wrong thinking.” But the person they love lives in their own reality, and the caregiver will have to say “no” over and over again, adding stress to the relationship.
Avoiding “no” makes sense, but Waugh also says caregivers shouldn’t say, “Do you remember?” What may seem like a mild query may be considered a challenging quiz for someone with memory loss.
“It’s like waving a red flag in front of a bull,” says Waugh. “The person probably doesn’t remember whatever it is, and asking them to do that puts them under pressure they no longer know how to handle.”
What to say instead
Instead, Waugh encourages people to use the phrase from her book’s title, “I was thinking…” as a starting point for triggering memories. If a loved one tells you they have to go to work, even though they haven’t had a job in years, calmly say, “I was thinking…” and then go into details about the job they once had.
If it suddenly occurs to them that they’ve lost a loved one – even if it happened years ago, you could start with “I was thinking…” and then relate a happy memory of that loved one’s pie baking skills.
Successful communication with loved ones who have dementia can be extremely difficult. Waugh knows this very well.
“We have to stop looking [our loved ones] as always,” Waugh writes in his book. “When we change our expectations, we can find them as they are. We can have meaningful conversations. Our relationship, although different, will be much more fulfilling. It will give us happy memories of the second part of their lives.”
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