Alzheimer’s deserves to be on the front page

Skip and Meg Curtis, New Hampshire innkeepers, one year after he was diagnosed with early onset Alzheimer's.

Meg Curtis read my recent story about Alzheimer’s in PARADE magazine, and she wasn’t happy. Why was her story, painstakingly told to me in an hourlong interview and several followup e-mails, reduced to a simple, two-graph blurb? Why didn’t we include the photograph of her husband, Skip, robbed of his personality by early-onset dementia at the age of 59, so readers could see how shockingly young he was?

“First of all..this is NATIONAL ALZHEIMER’S MONTH!!!!” she wrote in an e-mail last Sunday when the story disappeared. “What appears on the cover is a pie and most of the magazine is devoted to pies! This disease is reaching epidemic proportions, and every one of us will be affected in some way with this disease. Even Medicare could be bankrupted by the Baby Boomer generation.”

Meg was right. Alzheimer’s deserves much more attention than it gets. The struggles she and Skip faced deserve to be told in all their complexities and glories: Her gut-hollowing realization that she had a whale of a bigger problem than a foreclosure notice when her husband finally admitted he hadn’t paid their mortgage in six months — because he could no longer figure out how.

Dealing with an ill-equipped medical establishment (one doctor had difficulty even uttering the name of the disease). Her efforts to keep her beloved husband at home until the end. How little hope she was given beyond Skip’s participation in clinical trials.

An activist now trying to keep the message alive, Meg made a promise to her husband before his death last year  that she would dedicate the rest of her life to fighting “the monster,” as she calls it.

The federal government spends $3 billion annually on research to combat HIV/AIDS, a disease that kills about 10,000 a year, Meg explains. Which is well and good, but it only spends $450 million towards research for Alzheimer’s, a disease that kills 80,000 Americans a year. That’s the message Meg wants to push: To slay the monster, we’ve all got to step up because there’s not an American alive who won’t personally be affected somehow by this disease.

I knew the facts and figures already before undertaking this freelance assignment, having spent a year reporting on caregiving issues and studying long-term care at the Harvard School of Public Health. I also knew, after meeting with several book agents in the throes of my research, that as one put it: “People don’t want to read about dementia — it’s too depressing, and there’s nothing they can do about it to make it better.”

Writing this brief, 600-word PARADE story taught me a powerful lesson about dealing with grieving families. It’s a notion I heard repeatedly during my recent Dart Center for Journalism and Trauma Ochberg fellowship: As journalists who regularly interview traumatized or marginalized people, we owe it to our subjects to explain exactly what we’re trying to do before we interview them.

I could have been clearer about my intentions and limitations with Meg and more honest with myself about the heavy-handed summarizing that a short piece in a general-audience magazine requires. But as someone who routinely writes 3,000-word narratives, I can’t help but want to know the whole story.

This story was just a sliver of a piece of the long slog that families grappling with Alzheimer’s face. It focused on the warning signs of Alzheimer’s: The moment a woman progresses beyond simply forgetting where she put her keys to becoming lost and confused driving around her own neighborhood; the moment a man tells his wife in all seriousness and apropos of nothing, “An airplane has just landed on the roof.”

Perhaps that’s as much as I should have talked to Meg about in our interview. But as I explained to her last weekend, my future stories on caregiving will very much be informed by the whole of her story. In a talk I’m giving to the American Medical Directors Association in March, I plan to drive many of her suggestions home.

“Don’t sit back in your rocking chair and just wait to die,” Meg advises other families. Join clinic trials through the Alzheimer’s Association. Get a second opinion from a memory-care expert, especially if your family doctor is uncomfortable talking about the disease. Know your limits, and don’t forget to take care of you.

Skip Curtis died last year at 63, four years after he was diagnosed — but not before helping researchers identify the disease in a clinical trial involving spinal fluid. “It gave us a purpose,” Meg told me. “And he felt that he was helping mankind, which was his main purpose all along in life.”

His story has contributed in other ways, too. The PARADE piece alone generated so much response that the national Alzheimer’s office in Washington told me their helplines were jammed the day after the story ran. More than 32 million sets of eyeballs read PARADE, and that’s another statistic that can’t be ignored in these days of dwindling print-media consumption.

People still read, and they still crave stories that reflect their fears and concerns, even short how-to articles that are buried alongside cover stories on Thanksgiving pie.