Advocates and caregivers rally for Alzheimer's awareness
When his mother started using tinfoil in the microwave, Michael Styles knew he and his brother needed to take a closer look at her health.
Styles, assistant director for Utah's Division of Aging and Adult Services, spoke at a rally at the state Capitol Monday about providing care for a beloved relative who no longer knows who you are. Seven years ago, his mother was diagnosed with Alzheimer's disease.
"I became so angry and frustrated," Styles said of his mother's inability to remember events of his childhood and even the names of her grandchildren.
However, he soon learned to let her steer the conversation. When she reminisced about her past and called him 'Uncle John,' he went with it. "That was the greatest awakening for me," Styles said. "These memories are important to her."
He and others shared personal stories as caregivers and members of Utah's chapter of the Alzheimer's Association urged lawmakers to keep the epidemic in mind.
Jack Jenks, executive director for Utah's Alzheimer's Association chapter, urged implementation of the state's five-year plan passed by lawmakers in 2012 via SJR1 to expand research, raise awareness, provide caregiver support and mitigate the devastating impacts of Alzheimer's and related dementias.
"We'll be working with the interim health and human services study groups over the spring and summer to get some bills ready for next year," Jenks said.
By 2025, Utah is projected to see a 127 percent growth rate of Alzheimer's and related dementias, outpacing the rest of the nation, said Kim Ware, volunteer advocacy director for Monday's event.
Styles said part of his family's struggle stemmed from an ignorance about resources they could tap for help and support.
Bluffdale resident Amy Broderick shared her experience with her husband Noel, a hardwood-floor installer who was diagnosed with younger onset dementia eight years ago. The couple has been married for 16 years and their young daughter is now 13.
"My husband's diagnosis was not an easy one. His symptoms of forgetfulness, confusion and irrational behavior didn't make sense for a man of 32," Amy Broderick said.
Their 15-month search for answers led them through a stream of doctors, psychologists and neurologists. Noel Broderick had to quit work and they finally learned that his condition would only worsen.
Amy Broderick remembers her daughter, then six years old, once guiding her father out of oncoming traffic.
"He wasn't the man I married any more that man was disappearing fast," Amy Broderick said. "I realized our small daughter was struggling too. It wasn't until later that I realized she had not only become an adult but a caregiver as well."
Beset by burnout and exhaustion, Amy Broderick finally found a support group and recalled shedding tears of relief. "I had met nine other people who understood 100 percent what it was like to care for someone with Alzheimer's," she said.
In the meantime, Ware warns that ignoring the five-year plan could have drastic consequences.
"If the state plan is not supported," Ware said, "the medical needs alone for Alzheimer's patients will bankrupt the health care system in Utah."
Alzheimer's disease and related dementias in Utah
50,000 • The number of Utahns affected
127 percent • Utah's projected growth rate in these diseases by 2025
132,000 • Number of Utahns who serve as caregivers at home
250,000 • U.S. residents who suffer from younger onset dementia
1,600 • Utahns who suffer from younger onset dementia