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The real breakthrough for dementia: smashing the stigma

If a family member develops Alzheimer’s, you’re pretty much on your own — no one wants to talk about it. Changing that would improve people’s lives sooner than any drug will.

An image from photographer Joe Wallace’s "Portraits of Dementia" project to capture the humanity of people living with the condition. The subjects of Wallace’s photographs have ranged in age from 29 to 100. Find more images and details at portraitsofdementia.com.
An image from photographer Joe Wallace’s "Portraits of Dementia" project to capture the humanity of people living with the condition. The subjects of Wallace’s photographs have ranged in age from 29 to 100. Find more images and details at portraitsofdementia.com.Joe Wallace

On Monday, the Food and Drug Administration is expected to announce whether it is approving aducanumab, a new drug that is supposed to slow the progress of Alzheimer’s disease. The decision is going to be controversial either way. Many neurologists say that the evidence for the drug is too flimsy; in fact, 10 of the 11 independent experts asked to review it said there wasn’t enough proof it worked. Meanwhile, patient advocacy groups have pressed the FDA to OK it. Their point: We essentially have nothing else.

It’s true. Even though we keep hearing that a breakthrough for Alzheimer’s is right around the corner, it’s been 17 years since a new drug came on the market. Pharmaceutical companies have invested billions looking for that miracle medicine, ending in a string of disappointments. According to one analysis, 87 Alzheimer’s drug research programs have shut down since 2008. The few drugs available now only temporarily ease the symptoms.

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Even if aducanumab is approved, the evidence indicates it can help only people in an early stage of the disease. There’s nothing in the works for most of the 6 million Americans who already have more advanced Alzheimer’s.

So we can’t pin our hopes on breakthroughs. Science is not going to save people from dementia anytime soon.

Instead, I’ve got another idea that could help right now: Blow up the stigma.

I learned how pernicious this stigma is when both my parents began showing signs of dementia a few years ago. Because dementia is very common, I figured that dealing with it would be straightforward — that there was an established game plan for what to do and when to do it. Instead, with nothing to prescribe and no good way to treat it, doctors basically shrug their shoulders and offer their sympathy. “Keep her active,” said the doctor who diagnosed my mom, without any suggestions about what that meant or how to accomplish it.

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With dementia, you get a diagnosis, and the rest — the torrent of logistical, financial, and emotional consequences — is up to you to figure out.

An image from Joe Wallace’s "Portraits of Dementia" project.
An image from Joe Wallace’s "Portraits of Dementia" project.Joe Wallace

As I wrapped my head around this new reality, I had hundreds of questions. The most urgent one: If I can’t help my parents beat the disease, how can I help them live with it — and maintain happy, rewarding lives? Some people with dementia remain active and socially engaged for years after their diagnosis. For others, like my parents, things change faster. I wanted to help them transition gently into whatever new phase was coming and enjoy the rest of their time on this planet.

Medicine had no answers, so out of desperation I talked to anyone I could: friends, neighbors, strangers at the park. Almost everyone had a story of caring for a friend or family member with dementia. Many of them felt just as overwhelmed and alone as I did. This wasn’t just my private misfortune, I realized. It was a tidal wave.

I stopped feeling so sorry for myself, and I started asking why. If my situation was so common, why was it invisible?

Dementia is hidden because it’s unmentionable. It’s clouded by fear and shame.

Wrenching — but funny, beautiful, and absurd

As we adjusted, my parents’ phone stopped ringing. Old friends drifted away. I don’t really blame them; after all, my parents had done the same vanishing act in the past when one of their friends was affected. It wasn’t cruelty but fear. People don’t know what to say or how to act with someone who has dementia.

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It’s a fear of the unknown. It’s frightening to watch someone change. Dementia is not just memory loss; it alters personality, thinking, and daily life in unpredictable ways. It’s scary because we have no idea what causes most dementias — there are dozens besides Alzheimer’s — and we mostly can’t predict who will get dementia, how fast it will progress, or what will change. Even the biology of most dementias is mysterious. Scientists know that brain cells die, but they don’t agree on how or why.

Dementia also makes people dependent on others. That’s where the shame comes in. For many in this individualistic, self-reliant culture, that’s the most disturbing part. I know it was for my parents.

An image from Joe Wallace’s "Portraits of Dementia" project.
An image from Joe Wallace’s "Portraits of Dementia" project.Joe Wallace

So because of fear and shame, we don’t talk about it. We hide people away; we pretend that the crushing cost and commitment of caregiving can be handled quietly at home. “It is a bad disease, but we bring to it this burden of our interpretation, which is biased and cruel,” says Dr. Tia Powell, director of Montefiore Einstein Center for Bioethics and author of “Dementia Reimagined.” “It just makes it worse.” On top of that, the secrecy benefits hucksters, who promise cures with dietary supplements, brain-zapping lights, and other expensive junk.

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But pretending it’s not happening isn’t working anymore. The number of cases of dementia is skyrocketing as people live longer. The Alzheimer’s Association estimates that nearly 13 million Americans will have the disease by 2050 — and that’s not counting people affected by other types of dementia, such as Lewy body, frontotemporal, and vascular. Each case transforms a whole family that takes on the responsibilities of caregiving. The surging number of people who need help and accommodation requires a collective response.

So let’s start talking about it. First of all, let’s drop the scare words. Let’s stop calling it an abyss or a mind-stealing monster.

An image from Joe Wallace’s "Portraits of Dementia" project.
An image from Joe Wallace’s "Portraits of Dementia" project.Joe Wallace

The truth is, some people have only mild symptoms for years. “An awful lot of people are living with early- or mid-stage symptoms, being helpful, living a full, meaningful life,” says Jackie Pinkowitz, co-founder of the nonprofit Dementia Action Alliance. “We haven’t represented that very well in this country.” The alliance has a speakers’ bureau that arranges for people who are living with dementia to speak to communities, medical students, corporations, and the like — showing firsthand what’s possible even with the disease.

When I reached out to Daniel Gibbs, a retired neurologist in Oregon who himself is dealing with early-stage Alzheimer’s, he was about to leave for a two-day boating trip. He says his memory is not what it was. But he’s living. He hikes, reads two books a week, and recently co-wrote his own book, “A Tattoo on My Brain,” which describes his experience as well as lifestyle changes that help delay the onset and progress of the disease.

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But even people with more advanced symptoms are still human, still individuals with their own thoughts and experiences.

Massachusetts photographer Joe Wallace captures their energy with warm, expressive portraits that spark empathy and curiosity. The photos inspire a human connection. Looking at them, you wonder: Who is this person, and what is their story? “The ultimate goal is conversation,” he says. “If you can talk about it, you can solve a lot of these problems. Particularly the loneliness and the despair and the futility.” At shows where he displays his photography, he often invites caregivers and families to have a conversation about dementia, sort of a spontaneous support group meeting.

The truth is, dementia can be funny, wrenching, beautiful, and absurd. Sometimes all at once. To my surprise, I’ve sometimes seen this reflected on TikTok. Posts tagged with #dementia, mostly by members of the family of people with the disease, fit all that reality into a minute-long clip. A dad with dementia rocks out to Ozzy. An older woman points to a baby picture of her own daughter, now her caregiver, and says sweetly, “That’s my mommy.” After claiming she doesn’t know the piece, a tiny woman hunched at the piano tears into Beethoven’s “Moonlight Sonata.”

An image from Joe Wallace’s "Portraits of Dementia" project.
An image from Joe Wallace’s "Portraits of Dementia" project.Joe Wallace

Regularly seeing dementia depicted in all its variety would make it less intimidating. Because while it’s incredibly hard, it’s not all despair. Logic and analytical skills fade, but that’s not all there is to life. The ability to experience joy, pleasure, love, and laughter persists. My mother, for instance, has always been curious and observant. Now she can get totally absorbed in something that interests her. She’ll zero in on details, like the construction workers on the neighbor’s roof or a bug on a leaf. At those times she is intensely present, living vividly in the moment.

With this understanding, we can have a conversation about what a good life with dementia could look like. It should be led not by doctors but by people with these disorders and their families and caregivers.

I’d start here: Nobody wants to be hidden away and isolated. Everyone wants to make as many decisions about their own life as possible. “People with dementia want to be treated like a human being,” says Wallace. “They want to eat what they want to eat. If they like dirty jokes, they want to hear a dirty joke.”

Creating that good life will require a new way of thinking. It will mean education and support rather than pills and procedures. It’s on us — the people who don’t have dementia — to stretch our brains enough to make it happen.

Many people with dementia want to remain productive. Maybe somebody smart can launch an employment agency or part-time-jobs bank for them, like what’s been created for people on the autism spectrum. People with more advanced symptoms often love music, so what about podcasts or even musical training designed for people with cognitive impairment?

For that matter, why can’t people with dementia have fun? Some restaurants, museums, and community centers now host “memory cafés,” which offer social opportunities and activities like art, music, and games. That’s just a start. I’d love to start the equivalent of a Chuck E. Cheese for our families, a safe and entertaining place that caters to the quirks of those with the disorder in a judgment-free zone. Instead of ball pits and arcade games, we’d have newsreels from the 1930s and ’40s, a wheelchair-friendly photo booth, personal jukeboxes, and a brigade of extremely calm and fluffy dogs. Maybe even a cocktail list. “Family-friendly” usually is a code word for kids, but it really should include our elders, too.

A tidal wave of costs

Even for those who aren’t currently affected, there are self-serving reasons to start this conversation.

We need to talk straight with policymakers about the economics of dementia care. It’s a looming crisis. Because we avoid the subject, most people do not realize that they must prepare to pay the astronomical cost of care themselves. In the Boston area, assisted living runs an average of $73,000 a year; a nursing home is $160,000. Neither option is generally covered by health insurance or government programs until all your money has been spent.

An image from Joe Wallace’s "Portraits of Dementia" project. Find more at portraitsofdementia.com.
An image from Joe Wallace’s "Portraits of Dementia" project. Find more at portraitsofdementia.com.Joe Wallace

Taking care of someone with moderate dementia at home is a full-time job that soon turns into a 24-hour job. There are no affordable solutions. Some families do it on their own, a responsibility that requires someone, usually a middle-aged daughter, to quit her own job. People often hire help, and that job requires profound emotional intelligence, technical knowledge, and specialized skills: managing medications, recognizing common problems like urinary tract infections, persuading someone who is confused and upset to take a shower. But again because of stigma, professional caregivers are underpaid, often earning just minimum wage, and many good ones leave the field. This unsustainable situation demands a collective response.

One of these days, a drug for dementia will come along that really does work. It will almost certainly be something you take at the first signs of cognitive decline to keep it from getting worse. So people will need to be screened for dementia — but they won’t do that if they’re still afraid.

Coping with my parents’ transformation has been by far the most difficult experience of my life, and it’s not over yet. I can’t protect them from most of the difficulties they face. But I can try to lift the added burden of secrecy, for us and for others. I know the fear of dementia loomed over my mother for many years, even though she rarely talked about it. Maybe she knew, on some level, that it would be in her future. Maybe it was just bad luck. Either way, I wish she hadn’t had to carry that dread. The bittersweet irony is that now she no longer worries about it.

If we keep pretending dementia doesn’t exist, if we let the stigma stand, if people are afraid to admit that they or their loved ones have symptoms, not even a great drug will help. But if we start confronting the reality, we make life better not just for those people down the road but for all the people and their families who are grappling with it today. That would be the real medical miracle.

Kat McGowan is a journalist in California who covers health, medicine, and science. Follow her on Twitter @mcgowankat.