Last Updated: March 1, 2019
More awareness has recently been given to reducing the stigma that surrounds Alzheimer’s — whether it is celebrities speaking from personal experiences with the disease or countries like Canada, campaigning against the shame and stigma associated with dementia.
Learn more about Alzheimer’s stigma and four steps that you can take to reduce it in your life.
According to the Alzheimer’s Association, one in three seniors now die with Alzheimer’s and over five million people are currently living with the disease. Those numbers are expected to rise to 14 million people by 2050 — which is why it is of the utmost importance to reframe our ideas about seniors with the disease now.
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From how we care for to how we socialize with parents and senior loved ones with the disease, here are four steps to take to reduce the Alzheimer’s stigma today:
Actor Seth Rogen is the founder of the Alzheimer’s organization, Hilarity for Charity, which raises money for Alzheimer’s research through comedy. Rogen recently spoke to the Senate Appropriations Subcommittee on Labor, Health and Human Services about the urgent need for more Alzheimer’s funding and shared how his mother-in-law’s struggle with the disease impacted his family.
He told Congress he needed to speak out because: “People need more help. I’ve personally witnessed the massive amount of financial strain this disease causes… [I’d like] to show people they are not alone, [because] so few people share their personal stories.”
Rogen hopes that raising funds for research and sharing his personal story will change the stigma associated with Alzheimer’s.
“Americans whisper the word ‘Alzheimer’s’ because their government whispers the word ‘Alzheimer’s,’ and although a whisper is better than silence that the Alzheimer’s community has been facing for decades, it’s still not enough. It needs to be yelled and screamed to the point that it finally gets the attention and the funding that it deserves and needs,” Rogen says.
Additionally, Rick Steves, renowned travel guide author, radio and TV host, recently lost his mother to Alzheimer’s and spoke to the Washington Post about how to reduce Alzheimer’s stigma.
“We’re proud people. There are a lot of social expectations and we have a loved one who is not able to perform in public. So what do you do? I think it’s important to take them into public and let them sit there and let them make noise… let it shine that there is a loved one here who is enjoying this concert,” Steves states.
Richard Taylor, who was diagnosed with Alzheimer’s about 15 years ago and lives in memory care, shares that the only time many residents interacted with others was when caregivers administered their medication or served them food.
“Interaction was not encouraged because it was not seen as a real need. It’s not always that we need to be loved, we have a desire to give love, too. To develop friendships.”
Recent studies show that socialization actually reduces Alzheimer’s symptoms.
Taylor also shares that he experienced Alzheimer’s stigma firsthand. After reflecting on what he could do to change it, he dedicated himself to advocating for a different way for society to look at those with the disease.
Some memory care communities are already looking at the disease and those behind it in a different light. “Dementiaville,” an innovative Alzheimer’s care community, has increased the quality of life for residents by allowing them to experience life as they once had before the onset of their illness.
Taylor says that he and others with the disease just want to be understood. They want others to know, “I am still a whole person. I am not fading away. I am not a half-empty or soulless individual. I’m changing, but I still have the same needs as everyone else. What’s ebbing is not myself, but merely the capacity to meet those needs by myself.”
There is a misconception that upon receiving an Alzheimer’s diagnosis, one loses all decision-making abilities as well as independence.
Most people do not understand the full range of the disease’s conditions, stages and symptoms, all of which vary widely.
As we communicate with our parents and senior loved ones with Alzheimer’s, we must strive to remember that they are not defined by an inability to perform the same functions they once could or to retain the same information they once did, no matter how painful that may be for us to experience.
Our loved ones’ emotional needs do not decline along with a cognitive debilitation, nor do they decline with age at all. They are simply humans, living with an illness.
Do you have any suggestions on how to reduce Alzheimer’s stigma that you’d like to share? We’d love to hear your tips in the comments below.