From the Salt Lake Tribune
BY PATTY HENETZ
Advocates for Alzheimer’s education rally at Utah Capitol
Alzheimer’s disease and its crushing burdens on caregivers, families, the health care system, businesses, worker productivity and taxpayers’ wallets must be addressed, a crowd of about 200 agreed during a Capitol rally Wednesday.
Billed as an advocacy day for Alzheimer’s and other dementias and sponsored by the Utah chapter of the Alzheimer’s Association, the event was aimed at lawmakers who are considering a bill outlining a five-year state plan to address the 100,000 Utahns expected to have the incurable brain-wasting diseases by 2025. That would be a 127 percent increase since 2000, the highest growth rate in the nation.
For 13-year-old Boo Bustos, sitting in the front row, the rally was about his late grandparents, Cherie and Ed Hoerman, who lived with Boo’s family after their Alzheimer’s diagnoses. They both died, his grandfather in fall 2010, his grandmother last October.
Boo said he misses having them at home.
“After they had Alzheimer’s, they knew who I was,” Boo said. “But they couldn’t remember my name.”
Sen. Karen Morgan, D-Salt Lake City, and Rep. Carol Spackman-Moss, D-Salt Lake City, are cosponsors of SJR1, the Alzheimer’s State Plan Joint Resolution, now moving through the Legislature. A 20-member task force made recommendations that encourage state agencies, the private sector, the media and corporate and philanthropic organizations to make Alzheimer’s disease and related dementias a top priority. Morgan says she also is working on a bill that would put some of that plan into statute.
Key to the effort is eliminating the stigma that surrounds sufferers and their families by bringing the illness into the open.
Boo plays football with a recreation league team called the Royals. He asked team members to wear purple socks for a game — purple is the color for Alzheimer’s awareness — and posted his plan on a web site. Eight other rec teams wore purple socks, too. At Boo’s game, his parents hung a banner that said, “Royals knock the socks off Alzheimer’s.”
He wants other kids to understand what is happening with their older relatives when they have dementia. “It’s not a good disease,” he said. “If your grandparents get it, try to spend more time with them.”