Rising Cost of Caring for Alzheimer's

With no cure for Alzheimer's, families must often provide years of tough care.

March 24, 2009, 4:56 PM

March 24, 2009— -- Hundreds of families gathered at a rally in Washington, D.C., Monday night, in honor of their common mission: to care for loved ones who are slipping ever deeper into the fog of Alzheimer's.

"With Alzheimer's, you go through a progression, a downhill turn, and you don't have the support," Diane Shelton, whose husband has Alzheimer's, said at the rally at the Lincoln Memorial.

With no cure for the disease, families are left to provide years of care as each joins in its own long goodbye.

"Every single change that happens precipitates a whole new round of grieving," said Barbara Barham of Anderson, N.C., whose mother suffers from Alzheimer's. "The first time0 the person doesn't remember your name. The first time they don't remember you're their daughter."

When it came time for Xuan Quach, 36, to address the crowd, people at the rally understood her pain all too well. Her fears and everyday worries had a captive audience.

"I never thought that one day I would have to speak on my mother's behalf because Alzheimer's has taken away so much of her memory," she said.

The Alzheimer's Association estimates that as many as 5.3 million Americans now suffer from this memory-robbing disease, and the number is growing steadily. According to their estimates, it costs the country around $148 billion a year to provide care.

In her hometown of Alameda, Calif., Xuan has had to change jobs and move in with her 62-year-old mother, who was diagnosed six years ago.

"I definitely rely on my siblings to help me, and likewise. We all have roles to play in the caretaking of mom," she says.

Families Pour Hearts Into Round-the-Clock Alzheimer's Care

Xuan and her brother and two sisters have designed round-the-clock schedules, planning how and when they'll feed their mother, dress her, bathe her and organize her growing list of medications.

"In spite of her memory loss and the changes that she's undergone, she still has moments when she's quite lucid. She still has great moments of joy and laughter," Xuan said.

Through it all, Xuan tries to "engage" her mother -- to reach her and perhaps trigger a few more of those precious moments.

"Every family is different," she said. "But for us, to spend time with her and care for her, I think it's a testament to my mother and our love for her."

Xuan's testament is one echoed each and every day by countless families across the country.

On the organization's Web site, you can find message boards, create a calendar to keep track of tasks with your family, and locate assisted living facilities in your area.

To see the complete Medicine on the Cutting Edge archive, click here.

ABC News Live

ABC News Live

24/7 coverage of breaking news and live events