Every year, thousands of Oregonians are diagnosed with dementia, including Alzheimer’s disease, and family members often don’t know where to turn.
A coalition of legislators, nonprofits and activists says it’s time for that to stop. The group is releasing today a first-for-Oregon road map that calls for additional resources for unpaid in-home caregivers and new requirements for guardians, hospitals and long-term care facilities.
The plan has no deadlines and no authority to mandate action. But it has served to align different groups and will be used as a catalyst for change, with lawmakers and others biting off a piece at a time, says Sen. Laurie Monnes Anderson, D-Gresham.
“The baby boomers are coming,” she says. “We are here — I’m one of them. And the rate of Alzheimer’s and dementia is growing. This is going to have an impact on families; this is going to have an impact on caregivers; this is going to have an impact on state programs. We have to address it.”
Though it’s not an official state government document, “the state is in complete alignment with the policy goals in the plan,” says Mike McCormick, deputy director of the Aging and People with Disabilities division of the Oregon Department of Human Services.
The number of people suffering dementia is expected to climb from 76,000 to 110,000 in Oregon by 2025. But according to Kathleen Cody, executive director of the Oregon chapter of the Alzheimer’s Association, people are already feeling the affects.
“People think that the wave, the tsumani if you will, of Alzheimer’s disease is still on the horizon,” says Cody. “We know from our numbers internally that it is already here.”
In just the last year, the number of calls to the Alzheimer’s Association Oregon chapter and its help line has jumped by more than 25 percent, from 2,729 to 3,479. Some are from people with dementia while others are from family members.
- A one-stop-shopping web site pooling information and resources for people and families affected by dementias.
- Mandatory dementia care training for all guardians in Oregon
- Quality standards for dementia care in Oregon hospitals and long-term care facilities.
- Expanded research
About 25 other states already have plans. Cody says Oregon’s plan will help coordinate efforts, calling it “long overdue.”
State officials, health care providers, nonprofits and Alzheimer’s experts from Oregon Health & Science University formed The State Plan for Alzeimer’s Disease in Oregon task force in late 2010, staffed by the Alzheimer’s Association. It gathered about 600 comments through an online survey and others during seven public meetings around the state.
The report focuses particularly on more than 165,000 Oregonians who care for relatives with Alzheimer’s or dementia, saying more should be done to protect these unpaid caregivers from stress, depression and negative health effects.
A study found that an additional support program for family caregivers allows people with Alzheimer’s to stay at home for 18 months longer on average before being admitted to more costly nursing homes, which cost roughly $80,000 a year.
Multnomah, Jackson and Josephine counties are using grant funds to test out a training and support program for family caregivers for people with Alzheimer’s. Taking it statewide would save an estimated $300 million a year by keeping people out of costly residential facilities, the report estimates.
Health care costs for people with dementia are significantly more than for people who don’t have it. Oregon’s Medicaid-funded Oregon Health Plan spends $300 million annually for people with dementia, according to the report – about a tenth of its budget.
“The numbers are compelling; the aging demographic is only going to increase,” Cody said. “Most of the care is given by unpaid family caregivers. We need to figure out how we can support those caregivers.”
- Alzheimer’s Association, Oregon Chapter Help Line: 800-272-3900
- The Alzheimer’s Network of Oregon: 503-364-8100
- Clackamas County Social Services: 503-655-8640
- Multnomah County Star-C program for coaching caregivers: 503-988-3620
- Multnomah County Aging and Disability Services Help Line: 503-988-3646
- YWCA of Portland Alzheimer’s Caregivers Support Group: 503-988-3840
- Washington County Disability, Aging and Veterans Services: 503-846-3060