Alzheimer’s: Reagan’s long goodbye

The shaky, handwritten words of the Nov. 5, 1994, note got straight to the point.

“My fellow Americans, I have recently been told that I am one of the millions of Americans who will be afflicted with Alzheimer’s disease,” wrote Ronald Reagan, a simple admission of the illness the former president would live with for the last decade of his life.

“[W]e feel it is important to share it with you,” he wrote, because when he and first lady Nancy Reagan spoke openly about their previous health problems, “we were able to raise public awareness.”

Now, with an Alzheimer’s diagnosis, “we hope this might promote greater awareness of this condition.”

While other famous people had succumbed to this irreversible, progressive neurological disease — including such figures as actress Rita Hayworth, writer E.B. White and British Prime Minister Harold Wilson — the Reagans’ admission took the prominence and public awareness of Alzheimer’s to a new level.

Within a year, the first couple created the Ronald Reagan Research Institute with the Alzheimer’s Association, the nation’s oldest and largest advocacy, care and research organization for the disease.

For years, Mrs. Reagan and daughter Maureen Reagan, a former Alzheimer’s Association board member who died of skin cancer in 2001, spoke about the disease.

As a presidential couple, there’s no doubt the Reagans did great things “for the cause,” said Eric Hall, founder and chief executive of Alzheimer’s Foundation of America, another advocacy and educational nonprofit organization.

“I think he was really the first to lay it out,” said Mr. Hall, adding, “Mrs. Reagan’s championing of the cause has played an enormous role” in putting a spotlight not just on the disease but also the challenges of caregiving and the need for more research.

Since that 1994 announcement, there has been a “groundswell” of interest in Alzheimer’s disease, he said, adding that the AFA, founded in 2002, now has 1,600 member organizations and 13 websites dealing with aspects of the disease.

Reagan’s diagnosis even arguably accelerated the disease being officially identified as a leading cause of death in America.

Prior to 1994, Alzheimer’s was considered a debilitating disease, but not a fatal one. But in 1995, the federal government reviewed mortality data and realized that many deaths attributed to other causes (more than 20,000) were because of an underlying case of Alzheimer’s.

That year, Alzheimer’s was listed as the 14th-most-common cause of death in America, and the eighth most common among people aged 65 and older. An estimated 5 million Americans have the disease today.

It remains incurable and, while research has advanced, the only treatments available delay but don’t halt the loss of memory and of physical and mental functions.

In recent years, Alzheimer’s has been part of the debate over whether tissues from human embryos should be used (and destroyed) by researchers seeking medical cures.

Mrs. Reagan became an outspoken advocate for such stem-cell research, even though Republican President George W. Bush put limits on new federal funding shortly after taking office in 2001.

In 2009, the former first lady applauded President Obama’s executive order reversing the Bush policy. “We owe it to ourselves and our children to do everything in our power to find cures for these diseases,” Mrs. Reagan said at the time.

When Reagan, who was 83 when he made his fateful announcement in November 1994, he wrote that he was feeling “just fine.” But his last public speech had already occurred earlier that year, and his last public photograph was taken a few years later, at his 89th birthday celebration.

He died June 5, 2004, aged 93, from pneumonia, a common complication of Alzheimer’s.

Over those 10 years, Mrs. Reagan and other family members occasionally talked about how Alzheimer’s stole away their beloved husband and father. “The Great Communicator,” for instance, was strangely quiet at the dinner table or couldn’t remember jokes he had told for years.

In a 1996 speech to the Republican National Convention, Mrs. Reagan poignantly talked about “the terrible pain and loneliness that must be endured, as each day brings another reminder of this very long goodbye.”

A few years later, Mrs. Reagan sadly told ABC newscaster Diane Sawyer that “his days are pretty well-defined, I don’t have to plan anything.”

“Occasionally” the clouds part and her husband was like himself again, Mrs. Reagan told Ms. Sawyer.

“If it comes, it comes, and you are happy, grateful,” she said. But while she felt he always could tell how much she loved him, he only “sometimes” knew who she was.

“You come to realize more than ever that we’re all here for a certain space of time, and then it’s going to be over. And you better make this count,” Mrs. Reagan said.