More than five million Americans are living with Alzheimer’s. Experts say more than 130,000 of them are Georgians, but they aren’t entirely sure. So far, there is no effective way to track the number of people in the state with the disease.
GPB took a deep dive into exploring Alzheimer’s in Georgia with the original documentary Alzheimer's: Hope For Tomorrow, Help For Today, which aired Tuesday.
Defining The Disease
The disease kills more people each year than prostate and breast cancers combined, but there is still a fair amount of confusion about the difference between Alzheimer's and dementia.
Don Smith, the documentary’s executive producer, broke down the difference in one simple sentence on GPB’s On The Story: “all Alzheimer’s is dementia, and all dementia is not Alzheimer’s.”
Long story short: dementia is a state of cognitive decline that can be caused by Alzheimer’s.
One in three seniors die with Alzheimer’s or related dementia. Smith became more than familiar with those numbers while producing the documentary, but he says the thought of living with Alzheimer’s still scares him.
“It’s hard to get close to this, even as distantly close as I have, and go ‘boy I hope I do not get that’ ,” said Smith. “There are some people you’ll meet on the show who are extraordinarily brave in the way they are treating this.”
Charlie Schaffer, who was diagnosed with mild cognitive impairment in 2011, says he doesn’t consider himself brave for coping with an early stage of Alzheimer’s.
“No, I don't feel brave. I feel like I have a problem I have to deal with,” said Schaffer.
Schaffer’s mother had Alzheimer’s, and he says his cognitive decline may also lead to the disease.
“But to see these brilliant doctors try to find the cure makes me forget my problem.”
In 2013, more than 15 million Americans served as unpaid caregivers to people with Alzheimer’s disease. Harriet, Schaffer’s wife, takes care of him. But she doesn’t use that label.
“I still don’t see myself as a caregiver. I see myself as a wife and partner for life.”
Alzheimer’s Research: Moving Along, But Not Fast Enough
So, how quickly is Alzheimer’s research moving? Dr. James Lah is the lead researcher for the Alzheimer’s Research Center at Emory. He says the research isn’t moving fast enough, but it’s still coming along at “a remarkable pace.”
“Twenty years ago, the field was really quite stagnant from a patient’s point of view. But what’s been happening in the last five to 10 years has been really dramatic,” said Lah. “A couple of generations ago, we probably wouldn’t be diagnosing half the folks we are diagnosing now. A generation ago, we really couldn’t imagine really changing the course or even preventing disease.”
Doctors are actively pursuing treatments to find a cure for Alzheimer's particularly because of the baby boomer population. A section of the documentary sheds light on the challenge facing Alzheimer's researchers: trying to find treatment for the soon-to-be largest group to suffer from the disease.
“The baby boomers are now turning 65 at the rate of 10,000 a day. And one in nine of that 10,000 is going to have the disease. So while our phones are ringing off the hook now, it’s nothing compared to what it’s going to be like in the years to come.”
Lah says the progress of Alzheimer’s research depends on the amount of resources and money that will become available as more people learn about the disease. But Harriet Schaffer says the big funding depends on the support of politicians, not galas and fundraisers.
“I do think that more people are aware now, but I think the real problem is with the politicians. If they would quit fighting about healthcare and all get together behind this, then we’d really make some progress,” said Schaffer.
The Alzheimer's Obstacle In Georgia
In Georgia, some politicians have started making small steps toward supporting Alzheimer’s research, and are working on a way to keep track of the number of people in the state with the disease.
The Georgia General Assembly passed a bill to create an Alzheimer’s registry in April. The registry would allow Georgians to report Alzheimer’s as an illness or cause of death.
In the documentary, Dr. Brenda Fitzgerald, the commissioner of Georgia Department of Public Health, says one obstacle facing the state is finding out how many residents actually have the disease, or a stage of it.
“I think the main thing is, we really don’t know what we're facing in the state. We don’t know how many patients with dementia there are,” said Fitzgerald. “We don’t exactly know the distribution of all the resources, or how we can connect them, and I think the Alzheimer’s registry will help.”
State Senator Renee Unterman (R-Buford) says the registry is the first time the General Assembly has addressed Alzheimer’s.
“Over the years in the state of Georgia we’ve has several laws like Mattie's Call that is specific about elderly people,” said Unterman. “But not anything with dementia.”
Lah says having up-to-date numbers about the disease in the state is an important start.
“And it’s amazing in that the data that we have and the state and the country is extremely spotty,” said Lah. “And so just having the numbers and being accurate about them will be very helpful.”
The number of Georgians with Alzheimer’s is expected to rise 15 percent by 2020 and 46 percent by 2025.