Many people consider Alzheimer's disease an unspeakable tragedy. But, with the incidence of the disease on the rise, an alliance of Alzheimer's patients, advocates and caregivers has launched a campaign to help reduce the terror and stigma associated with the illness.
Pensacola resident Brian LeBlanc covers two of those alliance bases. He's an Alzheimer's advocate who also happens to have Alzheimer's. For him, the real tragedy of the disease isn't really what's happening to him, but what's happened to many of the people who know him.
"Sadly, people I've known for years no longer speak to me," he said during a Wednesday (1/25) media event at the Florida Press Center in Tallahassee. "They feel I can no longer communicate with them. Sadder, some of them are even members of my family. They just don't know how to talk to me anymore because they're afraid that if they ask me a question, I won't be able to answer them."
A big part of the problem, LeBlanc said, is that people are afraid of saying or doing the wrong thing around a person with Alzheimer's so they avoid contact all together.
"There may be times when we need a little bit of help figuring things out because we can't do things like we did before. But it doesn't mean we should be banished to our bedroom, or be made to sit in a corner by ourselves. We're still very much alive inside."
There's now a new tool to fight the isolation and the stigma associated with Alzheimer's. It's called a Caring Conversations Tool Kit. It consists of two handbooks, the first detailing the impact of the disease as it progresses and how the patient is likely to react. The second handbook is a guide for family and friends of the patient. Karen Love, executive director of the Dementia Action Alliance, which created the Tool Kit, said it also contains cards on which are printed handy conversation starting ideas and phrases.
"It becomes a way to get into conversations," she explained. "And then the last piece is the video, which tells the story through five different families and their own experience. Person-centered matters because that person-centered relationship based orientation is really important."
Tallahassee City Commissioner Gil Ziffer practices that kind of human contact with his old friend Sandy Halperin who has Alzheimer's. Ziffer said the two spend a few hours of low-key happy time together every couple of weeks. He added city government is bringing greater Alzheimer awareness to its employees.
"We're taking a lot of time with our first responders, with our utility folks and Parks and Rec folks...just about anybody we have in our city government that has direct contact with someone in the community," Ziffer explained. "We're going to go through a training process so they can become aware of the signs of dementia."
On the local care front, Westminster Oaks of Tallahassee Executive Director Don Wilson says a dedicated facility for residents with dementia will soon be under construction.
"(A) freestanding, specialized memory disorder building on the campus of Westminster Oaks, which will utilize state-of-the-art treatment modalities and special structure," Wilson said.
Other resources like the Area Agency on Aging and Eldercare Services of the Big Bend are also reconfiguring their operations to accommodate the ever-growing number of people with Alzheimer's and all those who care for them.
Website for Dementia Action Alliance: http://daanow.org/caring-community-conversations/