AUGUSTA, Maine — The number of Mainers living with Alzheimer’s disease will jump from 37,000 today to more than 53,000 by 2020, according to a new state strategy aimed at helping individuals suffering from the condition and their caregivers.
The new state plan, Maine’s first to address Alzheimer’s and related dementia, was unveiled Thursday at a State House press conference. It follows the release of a national Alzheimer’s plan in May 2012 that calls for finding effective ways to prevent and treat the mind-destroying illness by 2025.
Alzheimer’s is a progressive brain disorder that leads to a steady decline in memory and mental capability. Sufferers typically lose the ability to perform simple daily tasks and can survive for many years with the disease, often requiring help from family and caregivers. There is no cure, though treatments can temporarily ease some symptoms.
Alzheimer’s is the sixth-leading cause of death among all ages in the U.S., a statistic Sally Tartre of Kennebunk knows all too well, having lost her mother to the disease.
“She was the glue that held our close-knit family together,” said Tartre, who helped to develop the new state plan. “We looked forward to her future with her grandchildren. We had no idea that Alzheimer’s disease would claim this future.”
Tartre said she had to leave her job with a local nonprofit to care for her mother, who was living in a nursing facility toward the end of her life.
“People need to talk about Alzheimers, and make a plan,” Tartre said.
With the oldest population in the country and a rural landscape that makes accessing services difficult, Maine faces significant challenges in responding to Alzheimer’s.
The population of Mainers aged 65 to 74 is forecast to swell by 80,000 — 77 percent — over the next 12 years, the fastest of any age group.
The task force found ignorance and stigma about Alzheimer’s, as well as delayed detection and diagnosis of the disease, “fractured and ineffective” care, little support for caregivers and gaps in long-term care services.
The new plan grew out of 2011 legislation sponsored by state Sen. Margaret Craven, a Lewiston Democrat, who directed the Maine Department of Health and Human Services to convene a task force to address the disease. It calls for raising awareness about the disease, providing better diagnosis and treatment, offering support to caregivers and improving the quality of long-term care in the state.
“The state plan engages state agencies, local businesses, the private sector and philanthropic groups to make Alzheimer’s disease a top priority in Maine,” Craven said.
Craven cares for her husband who has Parkinson’s disease and related dementia.
The disease is a major drag on state and federal budgets, not to mention families. The annual cost of Alzheimer’s is expected to reach $1 trillion a year by midcentury, according to the Alzheimer’s Association.
Medicare and Medicaid often fall short in the face of the overwhelming costs associated with the disease, the task force found. Much of the burden of caregiving falls on families. About 147,000 unpaid caregivers in Maine tend to loved ones with Alzheimer’s and dementia, care that’s valued at more than $900 million, according to the state plan.
The plan did not include projections for how much it will cost to implement the recommendations. Maine is the 26th state to develop a plan like this.
“To achieve meaningful progress against Alzheimer’s disease, it must be considered and addressed as a public health crisis,” said Dr. Sheila Pinette, director of the Maine Center for Disease Control and Prevention.
For information about Alzheimer’s and dementia, visit the Maine chapter of the Alzheimer’s Association at www.alz.org/maine or call the association’s helpline at 1-800-272-3900.