Ideally, Emily Ong would be interviewed in her kitchen. This is where she feels most comfortable, where she engages with scent and texture, the weight of a knife in her palm, the shimmer of hot oil, the rhythm of slicing, stirring, tasting.
A dementia advocate who lives in Singapore, Ong was diagnosed with young-onset Alzheimer’s in 2017 (she was later reassessed as having mild cognitive impairment, which raises the risk of dementia). She sometimes struggles to find the right words or feels disoriented. But in her kitchen, she can tell her story. “That is the best way to know me,” Ong says. “My brain is fully engaged.”
Reporting on dementia rarely steps inside the home—or mind—of someone living with the condition. Instead, coverage keeps its distance, often fixating on prevention studies or overhyped breakthroughs; other stories cast the condition as a slow-motion tragedy. These narratives flatten a far more complex reality. “In news, it’s about clickbait,” says Australian activist and researcher Kate Swaffer, who lives with young-onset dementia. “It might be better for the story. It might be easier for the journalist. But is it the truth?”
After more than a century of study, scientists still don’t know what causes Alzheimer’s disease (itself the most common form of dementia)—let alone how to reliably diagnose, treat, or cure it. “This one disease really continues to stump us,” says Liz Seegert, a freelance writer and contributing editor specializing in aging for the Association of Health Care Journalists (AHCJ).
But dementia isn’t just a biomedical puzzle. It’s a deeply personal condition, one often accompanied by ageism and ableism. It is experienced in vastly different ways by more than 57 million people worldwide. Telling those stories demands both skepticism and compassion: resisting hype, scrutinizing expert sources, and above all, listening to people who live with the condition.
“There’s this myth: Once [they’re] diagnosed, you can’t look at them, can’t talk to them, you can’t trust them, you can’t believe them,” says Swaffer, author of 2016’s What the Hell Happened to My Brain? “Just try it, before [you] say we can’t.”
Covering the Science Critically
Dementia research has been marred by manipulated data, retracted studies, and industry influence. Many touted therapies have failed, and some drugs remain on the market despite serious risks. “Breakthroughs are few and far between,” says Charles Piller, an investigative journalist for Science and author of 2025’s Doctored: Fraud, Arrogance, and Tragedy in the Quest to Cure Alzheimer’s. Yet press releases—and headlines—don’t reflect that reality. When covering claims in dementia research, Seegert suggests a test: “Is this something you’re going to look at in five years and think, ‘I can’t believe I fell for that’?”
This skepticism is especially critical when covering the “amyloid hypothesis”—the idea that sticky protein plaques in the brain cause Alzheimer’s disease. Despite decades of research and billions spent on amyloid-targeting therapies, some scientists now argue amyloid is a symptom, not a source, of the disease. Several trials suggest amyloid-clearing drugs may actually accelerate brain shrinkage. And some researchers now suspect alternative causes, including autoimmune disorders, viral infections, disrupted oral microbiomes, or how the brain processes metals like copper and iron.
The unsettled state of the science raises the stakes for potential treatments. Since 2021, the FDA has approved three Alzheimer’s drugs designed to clear the brain of amyloid: Aduhelm, Kisunla, and Leqembi (which made Time magazine’s list of 2023’s best inventions). Drugmakers claimed reductions in cognitive decline of 23 percent, 35 percent, and 27 percent, respectively.
Like many drug studies, dementia research often excludes older adults with multiple health conditions—the very people most likely to be prescribed these drugs. Reporters should press researchers about who was excluded and why, then explain how that relates to the drug’s effects in real-world populations.
But these are relative figures. Participants didn’t improve; they simply declined more slowly than those on placebo. It’s the difference between a steep slope and a gentler one. “They can twist numbers and make them sound phenomenal,” Seegert says. “Twenty-seven percent sounds like a lot—but 27 percent of what?”
Seegert helps readers grasp these murky statistics with analogies. “A 25% discount on a $2,500 laptop would be a bigger deal than a 25% discount on a $4 cup of coffee,” she and co-author Kerry Dooley Young offered in a 2023 AHCJ guide to covering the drug industry.
Journalists should also examine who participates in these trials. Like many drug studies, dementia research often excludes older adults with multiple health conditions—the very people most likely to be prescribed these drugs. Instead, trials recruit younger participants with mild cognitive impairment or very early symptoms.
Reporters should press researchers about who was excluded and why, then explain how that relates to the drug’s effects in real-world populations.
How a trial defines success matters, too. Many use the Clinical Dementia Rating–Sum of Boxes, which assesses cognition by asking a person to remember where they were born, for example, or to describe how two items are alike. But an individual’s scores can fluctuate hour to hour, depending on stress, sleep, and mood. And what’s considered a significant gain in trials—improvement of a half-point (or less) on the 18-point scale—may be imperceptible to patients or carers.
Some studies cite biomarkers like amyloid levels in spinal fluid, but these don’t necessarily correlate with the severity of cognitive decline or the loss of daily, independent functioning. Rather than parrot statistics, unpack how results translate into real life. A person may care whether they have amyloid buildup in their brain, Seegert says, but “I care more that I’m able to get in my car and drive and find my way home.”
If a drug’s real-world impact is negligible, that may be your story.
Side effects are just as critical to note in coverage. Most amyloid-targeting Alzheimer’s drugs carry serious risks, including potentially lethal brain swelling and bleeding, known as ARIA (amyloid-related imaging abnormalities), which can affect up to one in three treated patients in some clinical trials. The term may sound melodic and benign, but it’s not. “People should translate what that euphemism really means,” Piller says.
Melody Petersen laid out this reality in a 2024 article for the Los Angeles Times about a 79-year-old Leqembi trial participant. “Infusions of the drug gave her headaches so severe they sent her to bed,” Petersen wrote. “A week after the third dose, she was at a restaurant with her best friend when her speech slurred and she had a seizure.” The woman died five days later.
Trials must report all adverse events to the FDA, but those details don’t always appear in press releases or journal articles. Journalists can check ClinicalTrials.gov or the FDA’s Adverse Event Reporting System (FAERS) for red flags like ARIA and participant deaths. A FAERS search of Leqembi, for instance, shows ARIA among the most frequently reported side effects. (If federal databases are inaccessible, search for archived versions and non-governmental sources of data.)
Vetting Sources and Calling Out Conflicts
Reporting on dementia should also cover who’s shaping the narrative around studies—and their motivations.
After all, Alzheimer’s drugs are billion-dollar products. Aduhelm launched with a $56,000 annual cost. If 1 million of the 1.3 million Americans living with Alzheimer’s were prescribed it, Piller details in Doctored, the “$56 billion price tag would nearly quadruple Medicare spending on any other drug.” (Leqembi and Kisunla cost $26,500 and $32,000 per year.)
Given these stakes, dementia research is riddled with conflicts of interest, says Piller. In Doctored and Science, Piller describes a revolving door between the FDA, academia, and pharmaceutical companies in which officials cycle through the institutions that develop, evaluate, regulate, and profit from new drugs, “spiking their salaries” as they go. In a 2025 investigation for The Lever, independent journalists Shannon Brownlee and Jeanne Lenzer found four out of six FDA advisers for new Alzheimer’s drugs had financial ties to pharma through funding, consulting fees, or speaking honoraria.
That’s why journalists must scrutinize sources for any potential biases. A COI doesn’t make a source off-limits. But it should prompt tougher questions and clear disclosure for readers.
Journalists should approach people with dementia as sources, not subjects.
Plug a source’s name into the Centers for Medicare & Medicaid Services’ Open Payments database, which tracks industry payments to healthcare providers (but excludes researchers without MDs). Academic researchers disclose financial ties in journal articles, but may do so incompletely; CVs, personal websites, or consulting histories might reveal more. And don’t exempt advocacy groups from scrutiny. In 2024, for example, the Alzheimer’s Association championed anti-amyloid drugs while receiving $6.4 million from pharmaceutical companies.
Journalists can also seek credible experts who can help sort hype from reality with tools like the Lown Institute’s vetted List of Industry-Independent Health Experts, sortable by specialty and affiliation.
Watchdog dissent may surface “a motherlode of great critique,” says Lenzer, in letters to the editor or response articles in high-profile journals like The BMJ, JAMA, or The New England Journal of Medicine (or in dementia-specific publications such as JAMA Neurology, Alzheimer’s & Dementia, Journal of Alzheimer’s Disease, and The Journal of Prevention of Alzheimer’s Disease). The PubPeer forum, where scientists anonymously critique studies and flag retractions, is another gold mine.
Centering Lived Experience
In a 2016 episode of This American Life, Carl Duzen, a retired math and physics teacher with Alzheimer’s, described struggling to draw a clock (a common cognitive test). “No matter what, I—I just—I couldn’t—I couldn’t do it,” he said.
Ever the scientist, Duzen broke it down: a circle split into twelfths, each tick mark denoting one hour, five minutes, or five seconds. Using a clock, he realized, means visualizing multiple layers of time at once. “Not that I could do it easily for a while,” he said, “but that I at least understood why I was having trouble.” Where a doctor might see a symptom, Duzen saw a puzzle—and met it with curiosity.
This illustrates why journalists should approach people with dementia as sources, not subjects. “Don’t underestimate the people with dementia,” says Hom Shrestha, a researcher with dementia. “They are still meaningful. They’re still able to communicate.”
Too often, stories default to caregivers as stand-ins—a practice many people with dementia have long criticized.
Yet too often, people with dementia are spoken for rather than heard—reinforcing the stereotype that they’re passive, hollow, and dependent. “People assume we cannot participate,” Ong says. “It’s just that our lived experience is not easily digestible from the external.”
Journalists can aid in that translation. Approaching people with dementia as experts in their own lives both reaffirms their dignity and ensures story accuracy. Too often, stories default to caregivers as stand-ins—a practice many people with dementia have long criticized. “To me, even if you have a very good narration from the family side,” Ong says, “it’s still not the true account of a lived experience.”
Of course, every experience is different, so it’s important to choose with intention. Covering a clinical trial? Talk to a participant. Covering a care facility? Speak with a resident. Writing about early diagnosis or biomarkers? Ask someone with dementia what their diagnosis clarified—or didn’t. If your story is about an assistive technology, have a real user review it.
Groups like Dementia Alliance International and the National Council of Dementia Minds—both led by people with dementia—can help connect journalists with relevant sources. So can local support groups and personal blogs. Trial participants often post on ALZConnected’s online forum, and hashtags like #DementiaVoices and #LivingWithDementia can surface first-person accounts on social media.
Swaffer says journalists have no excuse for failing to source people with dementia. “They’re just not looking hard enough,” she says. “You’ll find us; we’re everywhere.”
Interviewing With Care and Consent
When it’s time to interview, tailor your reporting approach to your sources’ needs. Traditional hour-long or rapid-fire conversations can be exhausting—or simply inaccessible.
Instead, ask sources with dementia how they’d prefer to communicate. Some people may prefer written exchanges, with time to reflect. Others may find in-person meetings less disorienting than video calls. Mornings may be better than evenings, when fatigue or confusion can set in. Go at their pace, pausing when necessary. Ask one question at a time. Be ready to repeat or rephrase. Accommodating someone’s needs doesn’t diminish their expertise—it amplifies their insight.
Before an interview, Ángela Ávalos Rodríguez introduces herself, outlines her story’s purpose and reach, and ensures sources understand they can decline at any time. “It’s almost like reading them their rights,” says Ávalos, a veteran health reporter for La Nación in Costa Rica. Reporters must confirm that sources grasp what participation entails and provide informed consent. Carers can support that process, but in most cases they cannot consent on someone else’s behalf.
Building rapport takes time. For a 2022 multimedia project on dementia-friendly homes, reporters at The Straits Times in Singapore spent months visiting Peter Lim, who has dementia, at his home before bringing in video cameras and imaging equipment. “We couldn’t just barrel straight ahead and get what we wanted,” says correspondent Akshita Nanda, who writes about health.
It’s helpful to be flexible with setting, too. For Peter, home is where he can be most himself, singing along to the karaoke machine in his living room. For Ong, that’s in the kitchen, cooking. For someone else, it might be walking in nature, or gardening.
Even when verbal communication fades, people with dementia may continue to express themselves through art, gesture, music, or movement—forms of communication journalists can include in their reporting.
In a 2019 feature for The California Sunday Magazine, Katie Engelhart followed Debra, a 65-year-old with dementia who chose to end her life. Engelhart later told Nieman Storyboard she relied on deep, prolonged conversation to understand, then portray, Debra’s inner landscape. When Debra read, Engelhart wrote, “it was as if the pages lost their outer borders and the words danced away.” Her thoughts “felt like seeds that never germinated.” Though Debra could be scattered, months of careful reporting (including access to Debra’s texts and medical records) allowed Engelhart to weave those fragments together. “I wanted to help my readers feel their way into this woman’s chaotic mind,” she wrote.
Even when verbal communication fades, people with dementia may continue to express themselves through art, gesture, music, or movement—forms of communication journalists can include in their reporting. “There are other instruments of observation,” says Ávalos, who cared for her mother while she lived with dementia. “I understood my mother without saying a word.” Her advice to journalists: Slow down, pay attention, and observe the full context.
In her 2025 investigation into older adults abandoned at a public hospital in San José, she tells the story of “Manuel,” 81, who went to the ER with bruises from a fall and, after 127 days, still wasn’t discharged.
“’Manuel’ remembers very little of his life. His memories are like a cloud that passes in front of his eyes and evaporates without leaving a trace,” Ávalos wrote. [This passage has been translated from the original Spanish.] Unable to rely on his account, she describes his current setting instead: the unused cane perched by his hospital bed, gauze tying down his hands, high windows that let in little light, beeping machines that punctuate the otherwise silent room. His lethargy, she notes, could stem from medication—or intense isolation.
Scholar and artist Anne Basting encourages asking “beautiful questions”—ones with no right answers. While meeting with a man with dementia who no longer spoke, she spotted a piece of driftwood in his home. “Can you show me how water moves?” she asked. The man picked up the driftwood and answered wordlessly. “In his hand,” Basting said in a 2020 TED talk, “it became buoyant, in sync with the motion of the waves that he made with his arms.” Suddenly he was not disabled, she continued, but “a master puppeteer, an artist, a dancer.”
With consent, journalists might share journal entries, artwork, or audio recordings. The Straits Times documentary begins and ends with Lim reading aloud a letter he penned shortly after his diagnosis: “My brain works in such a difficult way, but this is okay. I will take it as it comes.”
Representing Dementia with Dignity
Language is a powerful tool that can either dismantle or perpetuate stigma. Conversations about dementia are rife with clichés both glib (“a few screws loose”) and grim (“the long goodbye”), while terms like “demented” or “senile” are unscientific and offensive. Describing someone as “suffering” from dementia or labeling them a “patient” outside of a clinical setting assumes a universal tragedy. In 2024, a prominent Alzheimer’s researcher publicly compared the people he studied to “infants in a human body.” These portrayals not only stigmatize but obscure the reality of dementia. “Guess what? Before dementia I suffered,” Swaffer says. “For many people with dementia, it’s actually not our experience.”
Metaphors, too, can be problematic. Calling dementia a “plague,” “tsunami,” or “time bomb” conveys urgent danger—at the cost of implying that people with dementia pose a threat to society.
Ong recalls a Singapore newspaper article in which a family described their loved one’s dementia as a “monster” they now lived with. “When you look at the article, you don’t see any other thing,” Ong says. “You see the word ‘monster.’” The framing, she says, is crushing.
To find the right language, ask people how they describe themselves. Many prefer “living with dementia” or “with a diagnosis of dementia.”
It’s not about ignoring or sugarcoating the difficulties of dementia, but holding them alongside moments of joy, autonomy, and presence—to report on what is being lived, not what is lost.
Here, though, pay careful attention to the cultural context of your reporting, relying on the guidance of local advocates and people with lived experience. In certain cultures, the term “dementia” is heavily stigmatized and is avoided in favor of terms like “cognitive decline” (used in China), “cognition disorder” (in Japan), “memory loss disease” (in Nigeria), or “memory disorder” (in Finland). Certain languages—such as Punjabi, Kituba, and Swahili—have no synonymous terms for dementia.
In some Indigenous cultures, memory loss is viewed as spiritual transformation—a shedding of ego and worldly attachment. “This is a continuing circle of life,” through spiritual and cosmic worlds, says Shrestha, who researches dementia care in Indigenous peoples worldwide and belongs to Nepal’s Newar Indigenous community. A person with dementia holds a unique vulnerability and wisdom, he says; it’s an honor to care for them as tenderly as one would their newborn.
Visual framing matters, too. In The Straits Times project, video journalist Jordan Lee deliberately avoided high-angle camera shots, which literally look down on subjects. Instead, he put the camera at eye level or from the source’s point of view. In print and online, avoid visual clichés, such as disembodied hands, blank stares, or someone confined to bed. These images undermine responsible storytelling.
Finally, consider the framing of your narrative. Focusing exclusively on future breakthroughs or cures renders invisible the millions living with the disease today. “There’s this deep-seated belief that our best hope lies in biomedicine,” Brownlee says. “But that ignores the care part. That’s where our focus should be right now—until we have better treatments.”
It’s not about ignoring or sugarcoating the difficulties of dementia, but holding them alongside moments of joy, autonomy, and presence—to report on what is being lived, not what is lost. “It has to be real, it has to be factual,” Ong says. “And yet it should give that sense of hope.”
Marion Renault is a freelance science and health writer whose work has appeared in The Atlantic, The New Republic, Slate, STAT, The New Yorker, Wired, and more. They live in Lausanne, Switzerland.