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One in eight older Americans -- 5.4 million -- live with Alzheimer’s disease, according to the American Alzheimer’s Association. The disease costs the health-care sector up to $200 billion annually. If those trends hold as the nation’s population ages (the number of Americans over 65 is expected to balloon by 75 percent by 2029), those costs, both personal and fiscal, could increase exponentially. The association places the tangible costs at $20 trillion over the next 40 years.
So what are states doing about it?
In 2009, the Alzheimer’s association worked with lawmakers in 20 states to pass legislation that created State Government Alzheimer's Disease Strategic Plans. They create a system for coordination among state legislators, government agencies, health-care providers and patients to confront the disease through public policy. Advocates hailed the movement as an important step toward crafting an organized approach to a disease that is the sixth-leading cause of death in the United States. As of September 2012, 24 states have finalized a plan, and 16 others (plus the District of Columbia) have established task forces to develop one.
“We have a crisis on our hands, and it’s not getting better. It’s getting worse,” says Matthew Baumgart, senior director of public policy at the American Alzheimer’s Association. “We’re not prepared, as a country, and states are really on the front lines.”
The efforts transcend more traditional politics. California and Texas -- two states that reside firmly on opposite ends of the political spectrum on most issues -- have crafted two of the most detailed roadmaps for addressing the needs of those suffering from Alzheimer’s.
California officials estimate that Medicaid enrollees with Alzheimer’s and other forms of dementia cost the state two-and-a-half times more than those without those conditions. The state expects its number of residents with Alzheimer’s to double to 1.2 million by 2030. Its strategic plan to address that looming problem is broad, ranging from increased public outreach to combat stigma to increased funding to support state and local services. It includes expanding CalCare Net, an online resource for long-term services and support, to all 58 counties and enhancing other consumer assistance programs such as the 2-1-1 information line. California will make various forms that are of particular importance for Alzheimer’s patients and their families -- such a power of attorney and physician orders for life sustaining treatment -- available for free to the public at public libraries and online. The state also intends to increase the care services, such as adult day care and in-home support services, which are available to patients.
Texas officials took particular interest in unpaid caregivers: there are an estimated 10.9 million nationwide and more than 850,000 in Texas alone who care for family members with Alzheimer’s without compensation (the total uncompensated care is estimated to be nearly $12 billion). They set a goal of engaging 20 non-traditional partners in disseminating information about the disease and supports available to those with it and those caring for them. The state will contract with one health-care system or group of primary-care physicians to develop a pilot programming allowing licensed professionals to work with unpaid caregivers to improve quality of care. Texas also plans by 2015 to develop formal guidance for targeted preventive brain health fitness screenings and accompanying training for physicians to perform them. And with their eyes well into the future, policymakers also recommended increase funding to the Texas Alzheimer’s Research Consortium and a 25 percent funding increase for other researchers.
Several themes found in these two states’ plans were common in most states, Baumgart says: training both health-care providers and support staff to handle those suffering from Alzheimer’s and expanding home-and-community-based services for long-term care to ensure that those who are capable of staying at home are able rather than going directly to a nursing home. The latter coincides with broader goals that policymakers have set out for the aging population, as Governing detailed in its October issue.
The long-term hope remains finding a way to eradicate the disease entirely. However, the financial landscape could lead to fewer government resources going toward research and support. California, which since 1985 has had one of the most generous state-funded grant programs for Alzheimer’s research, cut its program by 50 percent in 2009. Those cuts are expected to extend at least through 2015.
But counterexamples like Texas provide advocates with some optimisim. The federal government invested nearly $500 million this year into research, Baumgart says, yet he acknowledges that -- in an era of budget cuts and deficit reduction -- advocates have to remain vigilant in pushing for investments that they say will pay off in the future.
“It is vital that the government not only maintain, but increase its commitment to Alzheimer’s research,” he says, pointing to the expected costs with an aging population. “An increased commitment now can actually save a lot of money down the road, for programs like Medicare and Medicaid, if we’re able to improve treatment and even possibly find a cure.”