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When a Dementia Diagnosis Is Delivered Without Care
Experts outline steps for clearer, kinder conversations and practical help for patients
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Key takeaways
- Many patients report cold, rushed dementia diagnoses that add distress to an already difficult moment.
- Doctors are often uncomfortable delivering a diagnosis of an incurable disease, leading to limited empathy and support.
- Experts say clinicians can improve delivery by offering compassion, resources and realistic guidance for living well.
- Patients can take actions to get what they need out of those conversations.
Dr. Seth Stern knew there was something wrong long before he received a diagnosis. “I was very specific in my actions,” says the longtime ob-gyn. So when he began to notice inconsistencies in his usually precise behavior in 2017, he was concerned.
Over a period of years, uncommon events included making coffee but forgetting to put the mug in place to catch the hot liquid, leaving his house unlocked and showing up for a funeral on the wrong day.
“All these were extremely atypical for me,” Stern says. But on various physical, blood, imaging and cognitive tests, he scored very well. Still, he remained uneasy.
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In 2022 things came to a head for Stern, now 70, who lives near Atlanta. The previous year his passion for work on the labor ward had diminished. He felt only “apathy,” he says, which was incredibly unlike him. So he went back to his neurologist, someone he’d known professionally and personally for years, to be retested. Again, the results were reassuring. As he was leaving the office, the neurologist mentioned the only test he hadn’t taken was a PET scan of his brain. Stern wanted to do it.
When the results came back, his neurologist called him.
Stern says he was told, “The results of my PET scan came back consistent with FTD [frontotemporal dementia], I need to be seen by a neurocognitive specialist and try to enjoy the rest of [my] life. And that was the entire length of the phone call.”
Dr. Seth Stern received a diagnosis of frontotemporal dementia over the phone. As a physician, he knows it's better to give such information in a face-to-face conversation so patients can ask questions.
Courtesy Dr. Seth Stern
He was stunned. “There was no ‘Do you have questions for me?’ ” he adds, and certainly no empathy.
“Anytime a medical professional has to give undesirable news to a patient, they should do their best to have their patient come into their office to tell them face-to-face,” says Stern, speaking from years of experience. “This way the patient has the opportunity to ask questions and has the potential to bring someone with them to listen to what’s being said.”
Each year there are hundreds of thousands of people newly diagnosed with dementia in the U.S. It can be one of the hardest diagnoses to hear, given there is no cure for the various degenerative diseases, such as Alzheimer’s, that cause dementia. For many patients, the experience of receiving that diagnosis when delivered with little sympathy or sense of hope makes the news feel even more traumatic. But it doesn’t have to be that way.
Too many bad experiences
Stories like Stern’s don’t shock Dr. Daniel C. Potts. A decade ago, Potts, the attending neurologist at the Tuscaloosa VA Medical Center in Tuscaloosa, Alabama, went to a conference where several people living with dementia spoke about how their diagnosis occurred. Listening to them, he cringed.
“Down to the last person, they all had a terrible experience that they recounted with their diagnosis — absolutely awful,” he says. “It made me so embarrassed to be a physician that day.” He left the conference convinced that the medical profession needed to do better. Since then, he’s been raising awareness of the issue among his peers. He believes there has been some progress.
But why do some doctors give these diagnoses so coldly? Potts says neurologists “have a desire to figure things out,” so letting someone know they have a terminal condition makes them uncomfortable. They want to get in and get out.
“I don’t like the feeling I get when I have to tell someone there’s not anything I can do for them, that they have a diagnosis I can’t fix or cure,” Potts says. While he feels that more doctors are realizing life with dementia can be well lived, some fall into a common trap: They see someone with a brain condition as less of a person.
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“We somehow equate cognition with personhood,” he says, adding that if a doctor is skeptical that someone can live a full life with dementia, they may be less likely to offer the person much help and support.
How to deliver the difficult diagnosis
“Delivering bad news is definitely a skill that doctors can develop,” says Dr. Melissa Armstrong, a professor of neurology at the University of Florida. She is coauthor of a 2023 paper on best practices for communicating a dementia diagnosis. “People definitely have received this news in ways that add to their trauma or burden,” she says. “So we know there’s a need to do this better.”
Among the best practices, she says, are showing compassion and empathy, making sure the patient still has hope for the future and pointing the patient and their caregiver to resources where they can learn more and receive support.
“There’s so much we can do to help people living with dementia, even when we don’t have a pill to fix it,” Armstrong says. She adds that physicians can counsel patients on maintaining their brain health and connect them to rehab services “like occupational therapy to figure out, how do I do things better? How do I live a good life, even when some things are a little bit more difficult?”
Lost time
Pat Krebs of Columbus, Ohio, received her diagnosis not from a live human but from the screen of her online health care portal.
Pat Krebs got a diagnosis of Alzheimer’s disease after waiting two years; she feels that time was lost, but is working on lifestyle habits that support her health.
Courtesy Pat Krebs
Two years earlier, Krebs, 65, had begun to notice oddities, including forgetting an old friend’s name and messing up a favorite recipe. But trying to get in to see a neurologist “took four months,” she says. “And when I did, he wasn’t really concerned.”
Krebs scored just below the normal range on a cognitive test and was told to book a follow-up appointment with a neuropsychologist. That person was so busy, Krebs had to wait nine months to see her. The neuropsychologist told her she had mild cognitive impairment but that the cause was unclear and could be related to sleep deprivation.
A year later, back at her neurologist’s office, she underwent a lumbar puncture, a test for Alzheimer’s-related proteins in her spinal fluid. She was warned the results might come through while he was on vacation.
When she got the alert that some results had hit her patient portal, she took a deep breath and logged in, her husband by her side. Her heart sank. “It did say that due to the amyloid plaque and tau protein [in my brain], this diagnosis was consistent with Alzheimer’s,” she says.
Krebs chose to look at her diagnosis on the portal right away rather than waiting for her doctor to return from vacation, and she doesn’t fault her doctors for lack of empathy. But she is frustrated by how long it took to find out what was wrong. She feels she “wasted two years of cognitive health” during the process. She now takes an anti-amyloid medication to help slow the progression of her disease.
Dr. Nathaniel Chin, medical director of the Alzheimer’s Disease Research Center at the University of Wisconsin–Madison, says he discusses medication options — those that may ease symptoms and those that may slow progression in people at early stages of disease — after delivering a diagnosis. But he says there is much else doctors can do for people with dementia.
“If you only focus on cure, well then the answer is ‘No, we don’t have a cure for this,’ ” he says. “But that doesn’t mean people can’t live well and enjoy their life.” This is what Chin pivots to after he breaks the news to patients about their disease.
“We can focus on quality of life, which takes an effort,” Chin says, adding that a change of lifestyle is not easy for most people.
“Nothing is more offensive to a patient than telling them, ‘Well, you need to exercise 150 minutes a week, get your eight hours of sleep and eat this perfect diet,’ ” he says. “I used to say those exact things and then changed as a result of [patient] feedback.”
Being pragmatic, Chin now asks patients if there are little things they can do. If they watch TV, can they incorporate a game show to give their brain a challenge?
Challenging the brain can’t obliterate those proteins that are building up, he says, but, ”we know we can improve brain resilience.” He advocates for activities that “make you feel like you’re learning, but it shouldn’t be exhausting, it shouldn’t be stressful.” He recommends card games because they’re social too.
Pat Krebs is playing cards, doing brain games on her phone and going to sleep earlier than she used to. She was an executive for decades and admits that as a type A personality, it’s been a big adjustment to slow her usual pace as she manages her disease. But it’s also been a relief.
“In some ways, as strange as it sounds, it’s somewhat freeing to have a diagnosis in which you have to recognize that you can’t fix every problem,” she says. She lives on the cusp of realism and optimism about the future.
“It’s a delicate balance some days,” she says.
What can you do?
- Ask around to find a good doctor. Melissa Armstrong notes that dementia specialists are rare. Depending on where you live, you may not have much choice of doctors. Some online resources are becoming available.
- Write down your questions ahead of time. An average doctor visit is only about 15 minutes. Don’t leave the most important questions to the end; you may never get to them. “Go to appointments with the top three or four discussion items ready and stay focused so that you get the most out of the visit,” says Armstrong. Bring someone with you who can take notes at the appointment.
- Educate yourself ahead of time. “Patients and families that do their research on understanding the potential terminology, such as ‘mild cognitive impairment,’ ‘dementia’ and ‘Alzheimer’s disease,’ can ask detailed questions to the clinician,” Nate Chin says. Patients and families can’t control how the clinician discloses the diagnosis, but they can ask clarifying questions and correct any misunderstandings during the visit.
The key takeaways were created with the assistance of generative AI. An AARP editor reviewed and refined the content for accuracy and clarity.
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