Although funding for Alzheimer’s research has improved in recent years, advocates say it’s still not enough to avoid what is predicted to be a public health crisis in the coming decades.

Health care costs associated with taking care of Alzheimer’s patients are expected to skyrocket unless a cure or medications that dramatically slow the progression of the disease can be discovered, advocates for Alzheimer’s research said on Tuesday at the Alzheimer’s Foundation of America conference at the Portland Regency Hotel.

Paula Grammas, executive director of the George and Anne Ryan Institute for Neuroscience at the University of Rhode Island, said that while more than 99 percent of clinical trials regarding Alzheimer’s disease have failed, she is hopeful there will be a breakthrough soon. Scientists have “cast a wider net” as research funding for Alzheimer’s has increased to the current $2.3 billion annually, she said.

Grammas said short of a cure, if researchers could develop medications to stop or significantly slow the progression of the disease, that would help millions.

“We still don’t have anything that treats the root cause of Alzheimer’s, the dying neurons in the brain,” Grammas said.

Meanwhile, scientists have discovered risk factors for Alzheimer’s – including hypertension, obesity, poor diet, diabetes, smoking and a sedentary lifestyle.

Sen. Susan Collins says in her home, Alzheimer’s is known as the “family disease.”

Sen. Susan Collins, R-Maine,  the keynote speaker at the conference and an advocate for additional  Alzheimer’s research funding, shared her personal experiences of how members of her family were affected by the debilitating disease.

Collins’ father, Donald Collins, died in March, 2018 at age 92 from complications of Alzheimer’s and congestive heart failure. Two of Sen. Collins’ uncles – Dr. H. Douglas Collins and David Collins – succumbed to the degenerative disease, in 2008 and in 2011, respectively. Also, Sen. Collins’ grandfather, Samuel Collins, died of Alzheimer’s.

“In my home, Alzheimer’s is known as the ‘family disease,'” Collins said.

Collins supports boosting the National Institutes of Health’s annual spending on Alzheimer’s research from $2.3 billion to $2.8 billion. She has also spearheaded laws that support family caregivers and treat Alzheimer’s as a public health crisis. About 6 million Americans have the disease, a number that’s expected to more than double in the coming decades as the baby boomer generation ages.

Collins recounted her father’s eight-year battle with the disease, and his cognitive decline near the end. In his waning days, he continued to recognize her but could no longer put a name to his daughter’s face.

“I remember when my father could no longer remember my name,” Collins said. “I know just how difficult and devastating this disease is from my first-hand experience.” Donald Collins was a former state senator, Caribou mayor, business owner and World War II veteran.

Collins also shared how her “heroic” mother, Patricia, 92, struggled to care for her husband near the end, including one time late at night when he slipped and fell on his way to the bathroom. A petite 5 foot 3 inches, Patricia Collins couldn’t lift her 6-foot-2-inch husband, and had to call for an ambulance. He lived in a veterans’ home for the final six months of his life, but before that his wife cared for him at home, Collins said.

She said her father lived for eight years with Alzheimer’s, but he was fairly cognizant for the first six years after his diagnosis, deteriorating in the final two years.

“My father was amazingly accepting of his diagnosis,” Collins said. “The rest of us and the family were more devastated than he was.” She said he participated in a clinical trial in Boston several years ago, knowing that it wouldn’t personally benefit him.

Funding for Alzheimer’s research has been one of the few bipartisan actions Congress has taken in recent years, as research dollars have ballooned from $400 million annually several years ago to the current $2.3 billion.

Collins said more research is necessary for humanitarian reasons and also because costs are expected to balloon from the current $277 billion per year to $1 trillion annually by 2050.

“It is estimated that nearly half of baby boomers reaching age 85 will be affected by Alzheimer’s. Chances are that boomers will either be spending their golden years with Alzheimer’s or caring for someone who has it.  In many ways, Alzheimer’s is the defining disease of our generation,” Collins said. “We must not let Alzheimer’s define our children’s generation as well.”