Memory Eraser

The Alzheimer's Disease Assistance Center celebrates 20 years of outreach and education

Story by Christine Thompson
Photos courtesy of Taher Zandi

Your name. Your age. Your family …gone.
Your address. Your last meal. Your favorite movie…gone.
Your first date. Your first kiss. Your graduation. Your wedding…gone.
A lifetime of memories erased.

The diagnosis: Alzheimer's disease, the worst type of dementia disorder affecting five million Americans nationwide. And according to the Alzheimer's Association, it's the sixth leading cause of death in the United States. "I remember meeting this woman who didn't recognize her image in the mirror. She was so upset. In her mind she was in her forties but in reality she was about 70," Lynthia Lee Vera, says.

Vera has been an employee of the Alzheimer's Disease Assistance Center (ADAC) since 2001. But before joining the staff, Vera was one of the many people nationwide affected by a loved one's Alzheimer's. "Picture yourself with all of this information you have about yourself, and the last three years of your life have been erased," Vera says.  "When I went to see my father one time, he thought I was his sister and was talking about his mom and dad who had been dead for many years."

And while searching classified ads in the newspaper after her father's death, she remembers seeing the ADAC ad and knowing she just wanted to work. "In my mind I wanted to help people who were affected by the disease," Vera remembers. "I think it helped me heal and accept (her father's death)."

That's what the ADAC did; it provided a place of understanding and acceptance not only for Vera, but for the thousands of North Country residents who use the center's services. The center started off as the vision of one man, Taher Zandi, founder and director of the ADAC. "I used to see patients who suffered from dementia disorders and their needs and their family's needs were beyond the scope of what I was able to offer them," Zandi says. "We had nothing in this area for these folks and I felt a great deal of obligation toward my patients and their family members."

"Picture yourself with all of this information you have about yourself, and the last three years of your life have been erased."

Creating the center was a logical decision for Zandi. Before the ADAC, Zandi explains there was little to no professional expertise or familiarity with the disease and individuals had to go to Vermont or Albany for diagnostic services. Even with the Vermont and Albany centers, patients were being misdiagnosed or under-diagnosed.

During its first years of operation, the center provided diagnostic, assessment, management and support services, and professional educational training. "Over the years, we have served over 15,000 patients with dementia, and their families, sponsored over 800 educational events, and provided educational services to over 8,000 individuals," Zandi adds.

The outreach didn't stop with the center. Six years after opening, the ADAC decided to expand and establish caregiver respite services with the Third Age Adult Center. In the 14 years since it has been open, 2,000 people have been served. "Third Age provides daily social model adult day care services to elder participants with either dementia or frailty," Zandi explains. Third Age allows the primary caregivers the opportunity for time to themselves, and sometimes, they feel guilty about it, Vera adds.

"It's a disease where we know there is no cure,"Vera says. And people are afraid of it. "I remember this one woman. She would cancel and reschedule her appointments because she was afraid of getting diagnosed with Alzheimer's, but we found it was depression." That's why, aside from all its services, the center reaches out to educate the community. The annual Alzheimer's Walk is one of the ways the center raises funds to support community programs and services.

Kenna LaPorte, another ADAC staff member and walk coordinator, feels that a walk is a good way to get the community involved. "It raises awareness and hopefully eases the stigma," Vera says. LaPorte agrees that the more people are aware, and the more information people who are affected by the disease have, the more they can share with their friends and family members.

"Over the years, we have served over 15,000 patients with dementia, and their families, sponsored over 800 educational events, and provided educational services to over 8,000 individuals."

And even though there is no cure, there are ways to slow down the progression of the disease. According to Vera, it's important for the person affected with the disease to socialize and to stay active. "Especially at the beginning," Vera adds. "Have hope that there will be a cure, but know that right now, the key thing is getting people tested, getting awareness, and getting information."

At the end of it all, Vera says just think: "What was your loved one like before the disease?"

Zandi concludes, "we celebrate the fact that in the past 20 years we have stayed with our families and patients, we have guided them through very difficult times and have tried to serve as beacons of hope in this very difficult journey that they had to travel in."

Do you know anyone with Alzheimer's?