At 56, with sun-kissed skin, long blond locks and a bright smile, Deborah Jobe appears to be the picture of health. So people are often surprised when she tells them she’s living with dementia.
“Are you sure? Maybe you should get another opinion,” she remembers her friends asking after her diagnosis. Others sent articles suggesting she could reverse the memory loss with diet changes or better sleep.
Her frustration with those well-meaning but unhelpful reactions—forcing her to defend her diagnosis—is one reason Jobe chose to share her story as part of the Alzheimer’s Association's latest disease awareness campaign.
The ongoing campaign asks people with early-stage Alzheimer’s and dementia to share what they wish people knew about the disease.
Jobe, of St. Louis, was 53 and at the peak of a business career when she started “blanking out” or blurting out the wrong word during presentations. She’d make jokes about not having enough coffee that morning, but her husband noticed similar troubling episodes at home and urged her to see a doctor. Testing led to a diagnosis of a rare type of Alzheimer's.
What does she want people to know? “This can happen to anyone. It doesn’t have to run in your family, and you don’t have to be in a certain age bracket,” Jobe said.
The Alzheimer’s Association rolls out a major awareness campaign every June for Alzheimer’s and Brain Awareness Month. This year, it wanted to spotlight people living through the early stages of dementia, who often face stigma on top of the difficult diagnosis, said Monica Moreno, the group’s senior care and support director.
“Many people hear ‘Alzheimer’s’ and immediately think of the end stage of the disease,” Moreno said, but people with early dementia can enjoy years as active members of society.
The desire for others to see beyond their diagnosis was a common thread in the patient testimonials. Others spoke of isolation as friends and family distanced themselves, perhaps unsure how to engage.
“They still have much to contribute, but those stereotypes, misconceptions and stigma can really have an impact on their quality of life,” Moreno said.
The campaign encourages people to wear purple in June and share their Alzheimer’s stories on social media using the hashtag #ENDALZ. The group is also staging its annual “The Longest Day” event on June 21, which invites people to “fight the darkness of Alzheimer’s” through a fundraising activity of their choice.
The efforts come exactly a year after the FDA's controversial approval of Biogen's Aduhelm last June, which the advocacy group supported. The amyloid-busting drug once raised hopes that it would slow progression in early-stage Alzheimer's, but it’s been all but abandoned amid skepticism over safety and efficacy and questions about how it was approved. The Centers for Medicare & Medicaid Services has limited coverage to clinical trials only.
Jobe, who says she takes the same medicines as people diagnosed two decades ago, is disappointed that Aduhelm won't be widely available. But she's hopeful about other treatments in the pipeline.
“At least there’s that much more awareness now [thanks to headlines over the controversy]. So let’s see what’s next,” she said.