Probably the most common perception of those with Alzheimer's is that of a confused, feeble person. But for those in the early stages of the disease, this picture could not be further from the truth. Many of these people are active, vibrant members of the community, experts said, saddled by the misperception that they are incapable and somehow "less than" because of Alzheimer's. But as awareness of the disease has grown, they said, so has the resilience of early stage patients to push back against this image.
"It's in the early stages that they understand that they are in the fight of their lives," said Paulette Michaud, director of early stage services for the NYC chapter of the Alzheimer's Association. "They are so aware of what's going on with them and they know it's only going in one direction. The caregivers know that, too. So, there's that continuous kind of battle with this disease that they're not willing to go quietly."
Richard Taylor, a retired psychologist who has been living with Alzheimer's for eight years, wrote the book "Alzheimer's From the Inside Out" in 2006 and continues to produce a monthly newsletter. Taylor, 65, of Cypress, Tx, travels the country speaking about what it is like to have the disease and is a passionate advocate for the inclusion of Alzheimer's patients into the program development of Alzheimer's groups. Taylor said the common notion that Alzheimer's is a "long goodbye" is false.
"Every day I wake up and I say 'Hello, I'm me, I'm Richard, I am a whole person," he said. "There's nothing wrong with me . . . I may be different than I was yesterday, I might change in the middle of the day but I am a whole human being. Friends, as soon as they find out about your diagnosis, begin to say goodbye to you. They look at you to see what's gone."
Even those with the disease may have an inaccurate perception of dementia, experts said, and as a result, hesitate to reveal their condition to others. Alana Rosenstein, director of early stage programs at the Long Island Alzheimer's Foundation in Port Washington, said the topic comes up frequently in support groups.
"The disease may not be that apparent yet so there may be the issue of 'People aren't noticing what's going on with me do I chose to tell them or do I not chose to tell them? How do I try to cover or do I not try to cover?" she said.
Inevitably, there is acknowledgment of the stigma of the disease, she said. Experts said this stigma -- present with most conditions associated with mental cognition -- can lead patients to isolate themselves and try to "cover up" for as long as they can pull it off.
"There is this unspoken belief that it has something to do with a lack of character and that couldn't be farther from the truth," said Barbara Vogel, program coordinator for the Neuwirth Memory Disorders Program at Zucker Hillside Geriatric Center in Glen Oaks. "These are real illnesses and they need to be treated like any other illness that would effect any other organ in the body."
But because Alzheimer's involves cognitive function, experts said, loved ones sometimes forget that the changes occurring in patients are beyond their control, a situation that results in frustration on both ends.
"You wouldn't say to someone who's diabetic 'Just try harder, you can make your pancreas secrete insulin,'" Rosenstein said. "And yet someone might say to someone with Alzheimer's disease 'Oh just think, try harder you can think of it.' It's not the person with Alzheimer's disease's fault that they have these symptoms anymore than it is anyone else with any physical illness."
Nancy Noel, 66, and her husband Lincoln Werden, 73, of Manhasset have struggled with the changes brought by Noel's Alzheimer's.
"I feel, like a loss," Noel said. "Like I'm not what I was. And I also feel for my husband that he has to do a lot more than he would have had to do if I was still who I was."
Werden said he is frustrated with his wife at times, attempting to be sensitive to her condition and yet wanting to continue to function at the same level they have maintained throughout their marriage.
"It's kind of a weird thing for me because she's still a functionally intelligent woman in many ways yet there's a lot of basic stuff, stuff a kindergartner could handle, that she suddenly is wiped out of now . . . just remembering phone numbers and dates and just to be able to spell even certain basic words is now a problem for her."
Noel takes comfort in the early stage support group she attends at the Long Island Alzheimer's Foundation, where she is surrounded by those walking in similar shoes.
"We talk about how we miss what we don't have anymore," she said. "We talk about how much fun we have together and how great it is to be able to talk about it because you can't do that in the real world."
Also thirsty for the rapport only a fellow patient can provide, Taylor said he loves meeting others who share his disease.
"You have no idea of the sense of connectedness . . . because we're so alone," he said. "There's a kind of existential loneliness to having Alzheimer's. Because I feel the distance. We are growing apart. I can't always define it, I'm not always aware of it. But I know it's getting deeper and deeper and deeper."
Noel said her support group members lean on each other but that while the group has serious discussions it also shares laughter over their memory loss.
"We make jokes about it," she said. "We can do it because it's ours."