KNOXVILLE, Tenn. — For Darron Kidwell and his family, it was a double shock.
Nearly six years ago, doctors diagnosed his dad with Alzheimer's disease. Two months ago they diagnosed his mom.
"It's kind of stages of grief--while you're living. You want to deny, 'No, nah that can't be right,'" he said.
But after the diagnosis, his family didn't know what to do or where to turn. The doctor simply said to schedule a regular appointment and hope for the best from a terrible disease.
"The doctor was right: it’s not going to get any better," Kidwell said. "But you got to know and be prepared for that next phase, so you know how to make the plan for their care."
Kidwell—now an advocate with the Alzheimer's association—supports new legislation that would mandate more education for doctors so they can provide resources for patients and caregivers dealing.
"[Patients] also just need to plan for some of the practicalities of the disease. What modifications might they need to make to their home," said Rachel Blackhurst with the Alzheimer's Association in Tennessee.
Every year, the state Department of Health reports 3,500 Tennesseans die from the disease. More likely never receive a diagnosis.
Blackhurst said lack of diagnosis not only puts families and patients at a disadvantage, but also could set back research efforts to stop the disease.
And the Alzheimer's Association said that also hurts research efforts to stop the disease.
"It can delay the science," she said. "If you’re not getting confirmed diagnosis of the disease you’re not going to be studying it as well."
Kidwell said he's lucky: Both his parents are well enough to live at home still, and resources and support groups have helped him plan for what to do as their disease progresses.
"I've watched the man I've known my whole life over the course of five years become a totally different person," he said.
That will never become easier, but if the bill passes, he said others may find the support they need.
"What you realize is that someone else has been through it and somebody knows an answer."