Remembering Nancy Reagan: A Powerful Alzheimer's Advocate

Former first lady's efforts in raising awareness about the illness a key part of her legacy

The world lost one of its most powerful advocates for Alzheimer’s disease research this week with the death of former First Lady Nancy Reagan. She was 94 years old.

After former President Ronald Reagan announced he had the disease in 1994, Mrs. Reagan became a pioneering voice in the fight against Alzheimer’s at a time when it wasn’t openly discussed. She used her influence to advocate for families affected by the illness and to promote awareness. In 1995, the couple teamed up with the National Alzheimer's Association to establish the Ronald and Nancy Reagan Research Institute in Chicago. Over the years, the Reagans' work not only aided in easing the stigma around the disease but also helped raise millions of dollars for research.

“The public disclosure of their Alzheimer's experience created an enormous and much-needed upsurge of interest in the disease from the general public and government officials,” said Alzheimer’s Association CEO and President Harry Johns in a statement released after news of Mrs. Reagan’s death broke.

“It was our honor to work with Mrs. Reagan over the years to raise awareness and inspire progress in Alzheimer's research,” he said.

In addition to advocating for research, the former first lady also gave voice to the struggles faced by everyday Alzheimer’s caregivers, even as she grappled with her own responsibilities caring for her husband. She publicly discussed many of the heart wrenching situations she faced as Mr. Reagan’s disease progressed and she began to feel more alone.

"It's lonely, because really, when you come right down to it, you're in it alone. And there's nothing that anybody can do for you. So it's lonely," the former first lady told Mike Wallace in a 2002 60 Minutes interview.

She also shared some of the ways she coped with her husband's Alzheimer’s. For example, she told Wallace, she would sometimes re-read Mr. Reagan's old love letters to her to help re-gain a sense of connection with him.

Alzheimer’s disease is a fatal, progressive brain disorder and the most common type of dementia. It typically progresses slowly in three different stages – mild, moderate and severe.

Symptoms worsen over time, and include brain changes that manifest in memory loss and difficulty thinking and reasoning as well as personality changes that may include depression, withdrawal, mood swings and delusions, among others. The typical life expectancy for those with the disease is about eight to 10 years after diagnosis, although some people may live as long as 20 years after diagnosis.

More than two decades after Ronald Reagan’s Alzheimer’s diagnosis was made public, roughly 5.3 million Americans now suffer from the disease. The Alzheimer’s Association projects that the number of Americans 65 and older with the illness could triple by 2050.

Mrs. Reagan’s pioneering work in raising awareness about the disease has helped pave the way for those who continue to seek a cure.

Laura Dixon

As Caring's Editorial Manager, Laura writes and edits articles about important issues for family caregivers and seniors. See full bio