November is National Alzheimer’s Disease Awareness month, a time for wearing purple and walking in honor of beloved family members. But it should also be a time when we take a step back and acknowledge how little we know about Alzheimer’s—and the impact our misunderstanding has on those with the disease, and their families.
You see, we fear Alzheimer’s disease. The prospect of losing our minds and memories engenders within us more anxiety than any other terminal illness, according to a 2012 survey by the Marist Institute for Public Opinion.
We fear becoming the clichéd dementia patient: A grown woman throwing a tantrum in the grocery store. An older man making loud, lewd comments to passing strangers. A vacuous entity that wouldn’t be out of place in a post-apocalyptic zombie horror film. We fear a stereotype that has been created, not out of callousness, but out of misunderstanding.
“The hardest thing with this disease is having people around me—friends and family—and trying to explain to them every day what I go through,” says Rick Phelps, who has been living with Early-Onset Alzheimer’s Disease (EOAD) for over two years.
Here are five common misconceptions many people believe to be true about Alzheimer’s:
- Alzheimer’s and dementia are the same: Alzheimer’s is actually a type of dementia—the most common type—which is why the two terms are often used interchangeably. Somewhere between 60% and 80% of people with dementia are thought to have Alzheimer’s.
- Forgetting a friend’s name means you may have Alzheimer’s: The difference between a memory slip that signals Alzheimer’s and a one-off incident of aging is the topic of much scientific debate. The general rule is: misplacing your keys every once in a while is normal, but forgetting what your keys are for could be a cause for concern.
- Alzheimer’s only affects the elderly: Dementia doesn’t just strike those with grey hair. The early-onset form of Alzheimer’s that Rick suffers from has been identified in people in their mid-30s. Only about 5% of those with Alzheimer’s have EOAD, but its effects can be especially devastating for families.
- We know exactly what causes Alzheimer’s: Science has yet to determine the precise cause of Alzheimer’s. Many medical experts believe that a combination of biological processes triggers the disease, including: the build-up of neuron-clogging beta-amyloid plaques, the accumulation of brain cell-killing tau protein tangles, and damaging inflammation triggered by an overreaction of the immune system.
- Alzheimer’s turns people into wheelchair-bound zombies: Perhaps the most destructive—and pervasive—Alzheimer’s myth is the notion that people with the disease are doomed to a future in which their human essence will be slowly stripped away. “It’s a terrible disease, but there’s a lot of good left in life,” says Michele DeSocio, whose mother has been living with Alzheimer’s for more than 15 years.
To dispel this final falsehood, Rick, Michele and several other individuals who’ve been impacted by Alzheimer’s disease decided to share their real-life experiences in a groundbreaking story entitled, Fade to Blank: Life Inside Alzheimer’s, a multimedia exploration of the human side of Alzheimer’s, through the eyes of those living with the disease.
The goal of the online narrative is to spread awareness and educate people about the realities of life with Alzheimer’s.
Michele calls the project, “A true labor of love. It is one of a kind.”
“[Fade to Blank] is nothing less than breathtaking,” says Leeanne Chames, whose mother and mother-in-law both suffered from dementia. “I know, without a doubt, that it will touch so many lives.”
Anne-Marie Botek is editor in chief of AgingCare.com, an online community where family caregivers discover that they are not alone and gain the knowledge and support they need to help care for their elderly loved ones. Fade to Blank was underwritten by AgingCare.com as part of a movement to change the way the world views people with Alzheimer’s disease.