Advocates for Alzheimer’s education rally at Utah Capitol
Supporters urge passage of a joint resolution that lays out plans for dealing with the disease, other dementias.
Published: January 25, 2012 05:51PM
Updated: January 25, 2012 11:31PM
image
Al Hartmann | The Salt Lake Tribune Lynette Bustos, left, with her son Boo Bustos, 13, joined more than 100 family members, advocates and those impacted by Alzheimer’s disease at a rally at the Utah State Capitol to seek passage of SRJ1, Alzheimer’s State Plan Joint Resolution. Utah is the fastest growing state in the prevalence of Alzheimer’s disease. Boo lost both his grandparents over the course of one year to Alzheimers disease when they both lived in the Bustos's home. They wear purple sashes to symbolize the fight against Alzheimers disease.

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.”

Utah’s Alzheimer’s plan

During 2011, the Utah State Plan Task Force took comment from Utahns with Alzheimer’s disease and family members, medical and human services professionals and other state residents to develop a plan to combat the rise in Alzheimer’s and related dementias.

According to the task force report:

Utah will experience the highest growth rate of Alzheimer’s disease and related dementias, at 127 percent, exceeding any other state.

Half of all people with Alzheimer’s in Utah are in the early stage of the disease.

Most caregivers — 75 percent — are women; 41 percent are spouses; and half are adult children.

Many Utah families, particularly in rural areas, do not have access to post-mortem diagnostic services to know if their loved one did in fact have Alzheimer’s.