Destigmatizing Dementia: 'We're Still Here'
Living with dementia can be isolating for both patients and their families. As social interactions get awkward, people begin to withdraw. Not only do their memories fade, but people themselves begin to fade from view.
At least that's the common perception.
Now a group of local residents, who are living with early-stage Alzheimer's disease, want to change that. They don't want to disappear from the community around them. And they don't want people to forget the individuals they are.
Instead of hiding their disease, they’re celebrating life with it.
'I’m Still Here’
The group meets every Thursday at the Greenwood Senior Center. The weekly meetings give them a place where they can find support and friendship.
They're also working to change the way the public thinks of them. Roger Stocker, 63 and a former architect, is one of them. He was diagnosed with dementia three years ago.
"As long as they keep thinking we’re dimwits who don’t really speak well or don’t know what’s the next thing to say, they haven’t sat down with any one of us and realized we would have things to say that would be smart, that would be intelligent," he said. "We’re not something that’s a mis-benefit to life and country."
Stocker showed off a flyer the group recently put together. The flyer shows their pictures and a quote from each person that sums up what it’s like to live with memory loss. Stocker sees the flyer as a way to shift public thinking and create more dementia-friendly communities.
"It's a kindness thing," he said. "There’s this movement towards taking those with dementia and giving them the capacity to have their own life and at the same time know that they still have inadequacies."
At a recent gathering, the group performed a little rap to sum up their purpose.
There's a new dementia story taking hold
It's not that old story of shame and fear
It's people with dementia shouting: “I'm still here!”
That last line got cheers and applause.
Life Changes After Diagnosis
For most, life after a dementia diagnosis goes on as usual, but with some adjustments. Stocker, for example, continues to drive, though he has to pass a driving test every year. He runs a mile every other day, but he also wears an ID bracelet that has his contact information.
Even so, there’s no denying that life changes for people after diagnosis. And sometimes, they mourn the loss.
"I used to teach school for 44 years," said Cece Ruttkay, 71. She can no longer drive. Speaking is sometimes a struggle. "On the positive side, I have wonderful people in my life who help me. I have a good life, but I feel my time winding down. It gets harder for me to talk.”
"You probably wouldn’t know that because I've been doing so much talking," she said, with a chuckle.
More than 5 million Americans are living with Alzheimer’s disease. And many more will be diagnosed as the population continues to age.
Virginia Nielsen, 77, was diagnosed with dementia more than three years ago. She admitted there are times when she still feels anger, but otherwise she doesn’t fret about what’s ahead, except for one thing.
"I won’t see my grandkids grow up," Nielsen said. "I have two that are little, and three in college. That’s the only fear I have. I’m not afraid to die.”
Charlie Reedy, 62, and a retired Microsoft programmer, has a different fear.
"My biggest fear is that I won’t use the time that I have now in the best way," he said. He does a lot of volunteer work for dementia causes. Today he’s creating a website that provides information and resources for people newly diagnosed with dementia.
Reedy said the disease has taught him to appreciate life, to live in the present moment. The idea of not knowing when the disease will progress and how long this window of opportunity will last propels him.
"I think I should’ve had this attitude whether I had dementia diagnosis or not, to make the most of every day. And to some extent, that’s the good that’s come out of the diagnosis for me," he said. "I’m not wasting time."