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Nancy Reagan’s Caregiving Legacy

On the personal and political level, she stood up for those with Alzheimer's


The passing of Nancy Reagan at age 94 marks the loss of a woman who was known as much for her elegant Dynasty-style as for her influence on her husband Ronald Reagan’s presidency in the 1980s. But it was after she left the White House and her husband was diagnosed with the most common form of dementia — Alzheimer’s disease — that Nancy Reagan helped shine a light on the challenges of caregiving and became a fierce advocate for the science that may one day lead to cures for diseases that can devastate families.

The Long Good-Bye

It was 1994 when former President Ronald Reagan wrote his poignant letter to the American people that for the first time put a famous face on Alzheimer’s disease, a progressive, fatal brain disorder that damages and ultimately destroys brain cells and today affects more than 5 million Americans. In his letter, he acknowledged the blistering effects on the families and especially on the family caregivers, writing, “Unfortunately as Alzheimer’s disease progresses, the family bears a heavy burden. I only wish there was some way I could spare Nancy from this painful experience. When the time comes I am confident that with your help she will face it with faith and courage.”

And so she did.

From that moment until her husband’s death in 2004, Nancy Reagan experienced what Alzheimer’s families call the “the long good-bye,” lovingly caring for a husband who did not even recognize her in the last stages of his disease.

While she stayed by his side as she had throughout their 52 years of marriage, Nancy Reagan also took on a new leading role as one of the strongest voices for embryonic stem cell research — which many feel holds the key to identifying treatment solutions for everything from diabetes to vision loss to traumatic brain injury to Alzheimer’s.

Nancy Reagan, who was famous for her fierce loyalty to her husband’s image, became the graceful fighter in what she felt would be as important to her husband’s legacy — shedding light on a little-known disease with no cure yet — as his impact on the world stage. Her advocacy for what was seen as controversial stem cell research caused her to break with the opposition stance held by then-President George W. Bush and other conservatives in 2001.

She became a voice on behalf of millions of families going through the depleting, aching reality of Alzheimer’s.

— President Barack Obama

After Ronald Reagan died in 2004, Nancy Reagan became even more involved in stem cell research support, as acknowledged in President Obama’s statement Sunday of her passing: “She became a voice on behalf of millions of families going through the depleting, aching reality of Alzheimer’s and took on a new role, as advocate, on behalf of treatments that hold the potential and promise to improve and save lives.”

But for Nancy Reagan, the Alzheimer’s advocacy and awareness was an extension of the unique bond she shared with her beloved “Ronnie.”

The PBS program American Experience explained, “Ronald Reagan preferred to see himself as a simple citizen called upon to come to the aid of the nation he so loved.” Nancy Reagan, in turn, saw herself simply as a devoted wife who was called upon to help the man and the nation she loved address a growing epidemic in Alzheimer’s disease.

A Caregiving Life

In many ways, Nancy Reagan was a caregiving champion long before her husband was diagnosed with Alzheimer’s. When Ronald Reagan became Governor of California in 1967, Nancy Reagan became involved in the Foster Grandparents Program, which pairs senior citizens, some in assisted living or nursing homes, with children with disabilities. She maintained her support for the program when she went to Washington, and as First Lady, expanded it on a national level, helping to raise private funds throughout local communities.

While caregiving can create dynamics that pull families apart, it can also bring estranged loved ones together. That’s exactly what happened with the Reagans. As Ronald Reagan encountered the ravages of Alzheimer’s, his wife and their children (Patti Davis and Ron Jr.) grew closer, after years of a strained relationship.

“I spoke to my mother on the phone every day,” wrote Davis in a Los Angeles Times article in 2012, acknowledging the importance of her parents, whom she called “soul mates.” A harsh critic of both President Reagan and Nancy in earlier years, Davis returned to California from New York to help care for her father.

The disease also led both mother and daughter to understand how stigma gets in the way of finding cures and comfort. While Nancy Reagan became a leading voice on scientific research, Davis formed a support group at UCLA in Los Angeles for the family members rocked by what she calls “slow motion grief.”

Rendezvous With Destiny

In the last few years, it was Nancy who now needed the care of her family more than ever, having suffered from several falls — one in which she broke her pelvis without realizing it. The persistent pain finally drove her to a doctor, who diagnosed the fracture. (According to the Centers for Disease Control and Prevention (CDC), one in three older Americans suffer from falls each year, but fewer than half tell their doctor or a family caregiver.)

With Nancy Reagan’s help, awareness of Alzheimer’s disease and steps to finding a cure through stem cell research have grown considerably but not fast enough, according to leading advocacy groups such as the Alzheimer’s Association and UsAgainstAlzheimer’s network.

In 1996, the National Institutes of Health spent $311 million on Alzheimer’s research. Today, 21 years later, the figure has only risen to $591 million even though Alzheimer’s is the sixth leading cause of death in the U.S. More than $200 billion is spent annually treating Alzheimer’s, which is 400 times the amount spent on finding a cure. This for a disease that kills more people than breast and prostate cancer combined, according to the Alzheimer’s Association.

Nancy Reagan started in Hollywood as an actress in supporting roles and later became the most powerful support system for the most powerful man in the world. On the Today show the morning after his mother’s death, Ron Jr. noted that his parents’ love for each other was special. “She was lonely without him, and said as much. She missed him terribly,” he said.

In 1995, the Reagans together created the Ronald and Nancy Reagan Research Institute, an affiliate of the National Alzheimer’s Association headquartered in Chicago. Its goal is to accelerate research, including leading stem cell initiatives, to find a cure for Alzheimer’s disease. As Nancy Reagan is laid to rest beside her one true love at the Ronald Reagan Presidential Library in Simi Valley, Calif., it’s worth remembering her wish: that as a nation we do not rest until we find a cure for Alzheimer’s.

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