How to Reduce the Stigma of Alzheimer’s
Alzheimer’s awareness recently got a boost from actor Seth Rogen and travel expert Rick Steves, whose personal experiences with the disease inspired them to speak out about the great cost dementia levies against society due to associated shame and stigma.
Both appealed to the public to reframe our ideas about people who have dementia — from how we socialize and care for them, to how we include them in life events and daily rituals. Learn more about how to reduce the stigma of Alzheimer’s in your life.
1. Understand the Facts
There is a common misconception that upon receiving a dementia diagnosis, one loses all decision making abilities as well as independence. Most people do not understand the full range of dementia symptoms, conditions, and stages all of which vary widely.
Did you know that about 30 to 40% of senior patients who go to the emergency room are cognitively impaired, but do not have a diagnosis of dementia?
2. Think of the Person Behind the Disease
Richard Taylor, who was diagnosed with Alzheimer’s about 10 years ago, experienced Alzheimer’s stigma firsthand. After reflecting on what he could do to change it, Taylor dedicated himself to speaking out and advocating for a different way for society to look at those with dementia.
Some senior living communities are already looking at the disease and those behind it in a different light. “Dementiaville,” a pioneering dementia and Alzheimer’s care community, has increased quality of life for dementia sufferers by allowing them to experience life as they once had before the onset of their illness. For more, read, “The De Hogeweyk Dementia Care Revolution.”
Taylor says that he and other dementia sufferers want to be understood. They want others to know, “I am still a whole person. I am not fading away. I am not half-empty or a 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.”
3. Place a Priority on Socialization
From his experience speaking to senior living communities, Richard Taylor learned that the only time many Alzheimer’s residents interacted with others was when the staff served them food or administered their medication.
“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 symptoms of dementia.
4. Don’t Hide: Go Public
Last month, actor Seth Rogen spoke to the Senate Appropriations Subcommittee on Labor, Health & Human Services about the urgent need for more Alzheimer’s funding and shared how his mother-in-law’s long struggle with Alzheimer’s 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…. [and] to show people they are not alone, so few people share their personal stories.”
Rogan was shocked that his mother-in-law, who was diagnosed in her mid-50s, suffered from the disease at such a young age. He thought Alzheimer’s was “something only really, really old people got” and involved “forgetting your keys and mismatched shoes.”
Rogan hopes that by sharing his story, raising awareness about the disease and raising funds for Alzheimer’s research through his Hilarity for Charity foundation, will change the stigma associated with dementia.
“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.”
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 the stigma of dementia.
“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.”
As we communicate with our friends and family members who have 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. Their emotional needs do not decline along with a cognitive debilitation, nor do they decline with age at all.
Do you have any suggestions on how to reduce the stigma of Alzheimer’s that you’d like to share? Please let us know in the comments below.
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