Jen Hillis remembers her mom as a bright, well-educated woman who spent 28 years as a teacher with Greenville County schools helping countless students master the intricacies of calculus and trigonometry.
Then, one day, she couldn’t find her way to the restaurant down the street from her Greenville home.
And when the doctor asked her to subtract six from 100, she was stumped. She couldn’t remember the year she was born. Or the names of common objects.
At the age of 56, her daughter says, she was diagnosed with early-onset Alzheimer’s disease.
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“At first, we’d write it off. Being forgetful happens to all of us,” Hillis said. “I was shocked when he said that’s what she had. I lost it. I had no idea anyone could get it that young.”
Alzheimer’s is a degenerative brain disease that eventually robs its victims of their memory and their ability to function normally and care for themselves.
It typically strikes about one in 10 people 65 and older and as many as half of those over 85, according to the association, while early-onset Alzheimer’s accounts for about 4 percent of cases. And African-Americans are about twice as likely as whites to get the disease.
There is no cure, and treatments to slow its progression have shown limited effectiveness.
Hillis’ mom is one of the more than 5 million Americans — and 79,000 South Carolinians, or 11 percent of the state’s senior citizens — living with Alzheimer’s, a new report reveals.
South Carolina has seen a 17.9 percent increase in the number of people 65 and older estimated to have the disease since 2000, growing from 67,000 cases that year, the Alzheimer’s Association reports. It could reach 120,000 by 2025 as the population ages, according to the group.
And as the state with the 10th highest death rate from the disease, it’s seen an 80 percent increase in mortality since 2000, with 1,570 people dying of Alzheimer’s in 2010.
Almost two thirds of those with the disease are women. The association reports that a woman at 65 has a one in six chance of developing Alzheimer’s in her lifetime, compared with nearly one in 11 for a man. In fact, the group reports that women in their 60s are about twice as likely to develop Alzheimer’s at some time in their lives as they are to develop breast cancer.
“Women are increasingly at the epicenter of Alzheimer’s disease,” said Cindy Alewine, CEO of the association’s South Carolina chapter. “We currently make up the majority of people living with the disease — as well as caregivers for those individuals.”
Some 291,000 South Carolinians care for someone with Alzheimer’s, providing millions of hours of unpaid care valued at $4.1 billion a year, the association reports.
And 60 percent of caregivers are women, with women providing the most intense, round-the-clock care two and a half times as often as men.
Among caregivers who were working, 20 percent of women compared with 3 percent of men went from full-time to part-time work, 18 percent of women and 11 percent of men took a leave of absence, and 11 percent of women versus 5 percent of men stopped working entirely to care for someone with the disease.
The national price tag for caring for people with Alzheimer’s and other dementias is expected to hit $214 billion this year, with the cost to Medicare and Medicaid set at $150 million, according to the association. There are no South Carolina health cost estimates, the state chapter says.
And there could be 16 million Americans with Alzheimer’s by 2050 at a cost of $1.2 trillion, representing “a 500 percent increase in combined Medicare and Medicaid spending and a 400 percent increase in out-of-pocket spending.”
A bill signed into law in January included $122 million in additional Alzheimer’s funding, $100 million of which will be added to the National Institutes of Health existing $484 million budget for Alzheimer’s research, the association reports. The remaining funds will go to other functions, such as supporting caregivers and training health professionals.
It’s the largest-ever increase in federal funding for Alzheimer’s research and care programs, according to the group.
“The Alzheimer’s Association celebrates this significant milestone with our more than 600,000 advocates who have been relentless in their efforts given the current economic climate,” said Harry Johns, CEO of the Alzheimer’s Association.
But, the group says, that’s far less than the allocations for other diseases. And Alzheimer’s is the sixth leading cause of death.
By comparison, the NIH in 2013 got $5.6 billion for cancer research, $3.1 billion for HIV/AIDS, $2.05 billion for cardiovascular disease, $1.06 billion for diabetes, and $524 million for Alzheimers, the association reports.
“Smart investments by the federal government in breast cancer, heart disease, diabetes and HIV/AIDS have resulted in substantial decreases in deaths,” said Alewine. “The time is now to make comparable investments in treating Alzheimer’s.”
South Carolina provides funding to allow caregivers a break, or respite, which is currently set at $778,706, according to Beth Sulkowski, spokeswoman for the state chapter.
Meanwhile, the association’s Walk to End Alzheimer’s drew 6,946 participants, 1,650 more than in 2012, and raised a record $736,738 for 2013, a 19 percent increase over 2012, the group reports.
But too often, Alzheimer’s is something people don’t talk about until it happens to a loved one, Sulkowski said. So the group will launch a nationwide public awareness campaign this spring to engage more people. It’s hoped that will increase funding and, thus, research into treatments and cures.
“If we could eliminate Alzheimer’s disease tomorrow,” said Alewine, “we could save half a million lives in the United States every year.”
It’s been two years since Jen Hillis’ mom was diagnosed. The progression of her disease has been gradual.
Now 58, she can no longer drive and the problem-solving part of her brain has been severely affected, Hillis said. Her family is close by to help, including her octogenarian mother, who was devastated to learn that it was happening to her daughter instead of her.
But at least she still recognizes her loved ones, an ability that many sufferers lose.
“Thankfully, we’re not to that stage yet,” said Hillis, 32. “But there is no cure. No treatment. No slowing it down. And it’s 100 percent fatal.”