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Dealing With Denial After a Dementia Diagnosis

Experts explain why denial complicates dementia care and how caregivers can respond with compassion and support

9-minute read

Paul Wynn,

AARP

Published October 22, 2026

Molly Snee

Key takeaways

Denial of a dementia diagnosis is widespread among both diagnosed individuals and family members.
Fear and loss of control can lead to denial as a psychological defense, while a neurological condition called anosognosia can prevent someone from recognizing their impairment.
Adapting language, avoiding forced confrontation and seeking peer support can help family caregivers navigate the ongoing hurdles.

Laurie Waters of Clover, South Carolina, told no one where she was going. Not long after she was diagnosed with Alzheimer’s disease, she walked into a funeral home and planned her own funeral — the casket, the flowers and every detail. All by herself, she says, without anybody knowing.

“I was petrified,” says Waters, 61, founder and president of Paint Clover Purple, a nonprofit supporting people with younger-onset dementia. Everything she had found online described the decline and loss of independence, leading her to contemplate suicide. Meanwhile, the people closest to her were in denial. They kept telling her, “You’re fine. You don’t look like you have dementia. You beat cancer; you can beat this.”

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While her husband, Ricky, and daughter, Jessica, tried to help, she felt isolated because it took them a while to accept the diagnosis. Then she joined a peer support group run by the Dementia Action Alliance. She remembers seeing fellow member Terrie Montgomery smiling and laughing. “That changed my entire life when I saw that people with dementia were living fulfilling lives,” says Waters.

Causes of denial

Waters’ experience illustrates something families and clinicians see again and again: A dementia diagnosis can be difficult to accept and even easier to deny, both for the person who receives it and for the people who love them. The result can be delayed doctor visits, skipped treatments, missed chances to change habits and lifestyle, and resistance to help. But experts say what looks like stubbornness is often something more complicated — and understanding the difference changes how you respond.

Denial is really several different phenomena that blur together, says Dr. Allen Power, a geriatrician and clinical associate professor of medicine at the University of Rochester in New York, who now teaches and writes about dementia care.

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The first definition of denial is what most people think of: a conscious effort to downplay something you suspect is true. “I think most of us would prefer to be healthy and not have a chronic condition like dementia,” says Power.

Denial, he stresses, is a defense mechanism — and a rather helpful one. “Denial evolved for a reason, to shield people from crisis reactions,” says Power.

That fear in your body is always there, but cognitive issues magnify that feeling, says Dasha Kiper, director of caregiver support for Renewal Memory Partners in New York City. “A person living with dementia might not explicitly be aware of the disease, but they often feel the fear in their body that stems from the confusion and chaos that cognitive impairment creates,” she says. “How we deal with that fear varies from person to person. Some people go into fight mode, becoming more argumentative, defensive and hostile. Others go into flight or freeze mode, becoming more passive, overwhelmed and dependent.”

The second category is a medical condition called anosognosia, a neurologically based inability to recognize one’s own illness or impairments. “In dementia, a person may have significant memory problems or difficulty performing everyday activities yet genuinely believes everything is OK,” says psychologist Xavier Amador, CEO of the Henry Amador Center on Anosognosia and author of I am Not Sick, I Don’t Need Help! “The illness affects the very brain functions we use to recognize that something is wrong.”

The third category is simple forgetting. Someone who accuses others of stealing her purse may have just forgotten where she put it. The practical lesson: Before assuming a loved one is being difficult or acting in denial, ask whether something else could be going on.

When caregivers enter the denial loop

Denial doesn’t affect just the individual living with cognitive decline — it frequently traps family caregivers, creating a dangerous barrier to appropriate care.

Elizabeth Lonseth, author of The Dangers of Denial: Embracing the Challenges of Alzheimer's and Dementia, learned this lesson while caring for multiple family members. While she and her husband immediately recognized the signs of cognitive decline in her in-laws, confronting her own father’s illness was a completely different challenge. Lonseth was only 36 when her father began showing signs of vascular dementia following a series of heart attacks and strokes.

For Lonseth, being “daddy’s little girl” blinded her to obvious shifts in his personality and behavior. The wake-up call came harshly when a Seattle heart surgeon bluntly refused to perform a second bypass procedure on her father, citing his clear cognitive decline. “Even then, the reality was painful to accept,” she recalls.

Lonseth emphasizes that caregiver denial often stems from self-protection, but lingering in it leaves both the caregiver and the loved one vulnerable to severe risks, ranging from home safety hazards to complete caregiver burnout.

“Where the real danger happens is when the caregiver stays in denial,” Lonseth explains. “Because then you can’t care for your loved one. It gives you an excuse not to.” Furthermore, she notes, trying to force a loved one in mid-stage dementia to admit their diagnosis is counterproductive. “Stop trying to make them believe they have Alzheimer’s,” she advises. “Just let them be where they are, because we’re the ones that can’t be in denial. We’re in charge of their care.”

Denial merry-go-round

For many families, denial of dementia isn’t a single hurdle that is cleared once. It’s an obstacle that needs to be navigated again and again.

Steve O’Leary, 78, cohost of the Spotlight on Care podcast and a longtime caregiver-support-group leader in Orange County, California, knows that firsthand. When his wife, Patty, began showing changes, he did everything right. With his daughter’s help, he got her tested early. She was first diagnosed with mild cognitive impairment. A year later, the diagnosis was reclassified as Alzheimer’s. Patty accepted it. They found a doctor they liked, and she generally went along with the medical advice.

The denial came later. When O’Leary, who was still working full-time, needed to bring in a paid caregiver, Patty fought back. “We don’t need anybody here. I don’t need help,” he remembers her saying. When it became clear that she needed more care than he could provide at home and he moved her into a long-term care facility, she pushed back harder.

“I went through really nine months of ‘Why am I here? I don’t want to be here,’ ” he says. Every visit began with “I want to go home,” and a trip back to the house only made things worse. One day, Patty struck the staff member guarding the front door while demanding to be let out. Her behavior was completely out of character. “There’s this continual denial that starts in the beginning and recurs,” O’Leary says. “They’re basically fighting against the disease all the time, and they’re fighting against the idea that there’s something wrong.”

How to respond

There’s no script that works for everyone. “If you’ve met one person with dementia, you’ve met one person with dementia,” Power likes to say. Power and the other experts offered some starting points:

Drop the label if it’s a trigger. If your loved one bristles at “Alzheimer’s” or “dementia,” stop using it. Power once upset the daughter of a patient by writing “Alzheimer’s” on a death certificate; she insisted her mother never had it because “Alzheimer’s patients are violent.” For her, the word carried meaning that wasn’t true, so he stopped arguing about it. Kiper says to mirror their vocabulary, as long as the words they use aren’t harmful. Kiper has heard of one family that gave the disease a made-up name.
Ask whether it’s denial at all. Look for signs of anosognosia or plain forgetfulness before treating a loved one’s resistance as willfulness. Pushing someone to “admit” something they genuinely can’t perceive leads to hurt feelings and anger on both sides.
Do it with them, not to them. Power’s mantra, borrowed from the disability rights movement, is “Nothing about us without us.” Don’t make decisions behind a person’s back. Sit down and find out what driving or independence means to them, then look for workarounds. Think collaboratively. A daughter whose mother living with dementia packed all her underwear and no outerwear for a trip changed her approach. She decided to say, “Shall we pack together?” and ask, “What slacks are you going to wear?”
Ask yourself: Is it true, and is it kind? Kiper encourages caregivers to notice when raising the diagnosis sets off a fear response. If it does, change the subject. Telling someone, “You have dementia,” she says, can feel to them like “your brain is crazy and you’re no longer reliable.” She asks caregivers what they hope to accomplish and reminds them that their deeper truth is love and protection, even if a gentle white lie sometimes serves it. O’Leary found that the phrase “The doctor says…” worked for him with Patty.
Build trust together. Amador developed an approach called LEAP to help communicate with people with anosognosia. LEAP stands for listen, empathize, agree and partner. “Use the LEAP approach to address your loved one’s concerns and work together on a solution that supports safety and independence,” says Amador.
Find your people. Kiper says that talking with others who understand helps regulate the brain’s fear response, and that caregivers need an outlet beyond the person they’re caring for. For people living with dementia, Waters says, peer groups can be a lifeline. She says: “Look for support groups — whether in person or online — that you feel comfortable with; new peers and friends are waiting out there for you.”

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Paul Wynn, a veteran health care writer, has spent over a decade immersed in the caregiving community, both as a family caregiver and as a journalist covering caregiving issues for national publications.

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