PORTLAND, Ore. (AP) — By the best estimate, family and friends provide about $2.2 billion worth of unpaid care to people with Alzheimer's disease in Oregon each year. That's a number equal to the hole in Oregon's budget, and it's not likely to improve anytime soon.
In fact, say Alzheimer's experts, the number of patients will grow — estimates put the number at 110,000 by 2025, a 69-percent spike in cases in just over a decade, as baby boomers begin to grey.
To help Oregonians prepare for that increase, a statewide task force unveiled a proposal Monday that focuses on caregivers, state government and the improving quality of care.
The task force is made up of experts in aging populations, physicians and lawyers. The group has the support of the governor and state legislators, and is part of the U.S. Department of Health and Human Services' national rollout of its National Alzheimer's Project Act.
"We all need to roll up our sleeves and confront Alzheimer's disease now," said Dr. Jeffrey Kaye, a member of the task force and director of geriatric neurology at the Portland Veterans Administration.
The most salient element of the project's goals is to require all caregivers, including family, to get training on dementia and the responsibilities of representing someone with the condition. People in the latter stages of Alzheimer's disease often require in-patient psychiatric treatment and round-the-clock care in a secure setting.
That's not a financial reality for most Oregonians, who are instead left with the choice of requesting a civil commitment of a family member or acting as caregivers themselves. The people who choose to do so aren't required to receive any training
"Family members are thus often appointed as guardians with no training or orientation regarding ethics or the required duties," according to the report.
The proposed solution: By January 2015, Oregon will make training mandatory for anyone appointed to a guardianship position within 90 days of their appointment. The plan does not include an enforcement mechanism for ensuring the guardians get trained.
State government bears part of the burden, too. The report says the state spends $300 million per year in just Medicaid dollars on Alzheimer's patients, and the ripples spread to burden local governments, employers and the healthcare system.
"Families dealing with Alzheimer's face a difficult journey struggling with the impact of this devastating disease," said Kathleen Cody, executive director of the Alzheimer's Association Oregon Chapter, in a release. "By working together, there is hope for the future that caregivers will have the resources they need, and that we will someday achieve our vision of a world without Alzheimer's."
The importance of support groups
Bill Whitney of Southwest Portland was diagnosed with Alzheimer's five months ago. The 82-year-old has rediscovered drawing to help keep his mind engaged. He and his wife, Dee, and his daughter, Marya, are better prepared than most who also struggle to deal with the disease.
"He knows about support groups. He knows about safety issues. His family knows about where to get support for themselves," said Kaye. "Unfortunately, that's not true for most families."
Whitney wasn't afraid to share his story as he did Monday at the unveiling of the state's new plan.
"Instead of living with fear, I live with hope," he said.
Back home he raved about his art therapy class and the impact it has had on him.
"It makes a big difference, I think," he said. "I remember most of it. There are things I don't remember, because I have Alzheimer's, but I remember most of my artwork."
The Alzheimer's Association of Oregon is hosting town hall meetings on the plan later this month in Portland and Salem.
More information: State plan for Alzheimer's disease and related dementias in Oregon
KATU News reporter Patrick Preston contributed to this report.