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Published on: March 25, 2013
by Lois Alcosser for The Hour:
A diagnosis of Alzheimer’s Disease is shattering. But often the worst part is keeping it a secret. When the message to the caregiver is: “I don’t want anyone to know” a tremendous burden is added. The stigma of any mental illness still exists with the implication that it’s a weakness on the individual’s part, as if having Alzheimer’s is the person’s fault.
The same attitude used to persist with cancer. People didn’t want to mention the word. That finally changed and with the end of secrecy came the opportunity to get down to the monumental task of treatment and potential cure.
“Coming out,” letting family, friends and colleagues know what’s happening and loosening the chains of denial is a liberating decision. Nine times out of ten, people find that almost everyone knows someone affected by the disease and has experiences to share. This openness is necessary to fully understand symptoms, learn about lifestyle changes and bring relief and support to caregivers.
Scott Russell of Ridgefield was diagnosed when he was 59. Active, successful, beloved by his wife and sons, admired by friends and colleagues, Scott fell into a serious depression, but after weeks of isolated suffering, he realized that his choice of “Don’t tell anyone” was hurting him and his family. He recalled how “One day I just decided to end the secrecy. Self-pity wasn’t doing anyone any good. I couldn’t change the diagnosis, but I could certainly change the way I was handling it.
“I realized that I could be an example to others and change fear into hope. Still at the very early stages of the disease, I was able to show and tell different groups of people, especially young people, the importance of early diagnosis and treatment. I went to Hartford frequently, to convince legislators that more funding was needed for essential research. I visited schools, to show students that secrecy and dread don’t accomplish anything. Research and clinical trials are aimed at finding medications to stabilize the disease and eventually find a cure, but it takes action, money and commitment.”
Russell is now an Alzheimer’s Ambassador for the state of Connecticut. “Fear and secrecy about Alzheimer’s is exactly the opposite of helping to eradicate it,” he said.
“Coming out” can be liberating for caregivers as well. In Norwalk, the founder of a successful high-tech business accepted his wife’s plea to keep her early onset dementia a secret.
“I agreed because I wondered how my clients would react. Would they treat me differently? Would they think I’d be less reliable at work because of my new responsibilities at home?
“I decided that keeping back the truth was totally negative. Being open and sharing the situation with people at work was much more sensible. I figured that if I occasionally had to alter my schedule, they’d be informed and I wouldn’t have to make up reasons and basically lie. It was the right thing to do. In fact, several co-workers opened up to me about family and friends with Alzheimer’s.”
Eleonora Tornatore-Mikesh, executive director of the Alzheimer’s Association Connecticut Chapter, sees hope replacing helplessness when the diagnosis is Younger/Early Onset Alzheimer’s.
A 24/7 Helpline 800-272-3900 answers questions, locates support groups and provides resources to the community.
“The value of early diagnosis and treatment is proven,” Tornatore-Mikesh said. “It’s part of our new approach to Alzheimer’s. Removing the stigma and ending the secrecy is essential to researching treatment options and to plan for the future. Our vision is a world without Alzheimer’s.”
One of the first steps in “Coming out” is joining a support group. You’re with people who know what you’re going through, and can give you tips about coping. It’s a tremendous relief, hearing what others are doing. Listening to others who are in the same boat makes a big difference and making suggestions to others feels good.
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