With the expected surge of aging Americans over the next few decades, states are trying to prepare for a wave of Alzheimer disease and dementia, which carries with it an enormous societal burden, extracting a toll on families and caregivers, and impacts state Medicaid budgets. In response, nearly every state is turning to Alzheimer action plans to try to cope with what is coming in the years ahead.
With the expected surge of aging Americans over the next few decades, states are trying to prepare for an incurable disease that will worsen with that wave. That incurable disease—Alzheimer—carries with it an enormous societal burden extracting a toll on families and caregivers. It also impacts state Medicaid budgets, which bears the cost of the inevitable long-term care services that are usually required.
Over the past decade or so, nearly every state worked on creating state Alzheimer disease action plans in order to lay out what is needed, or will be needed, in the years ahead. The plans address gaps in current and future services, covering areas such as early detection and diagnosis, care and case management, quality of care, healthcare system capacity, training, workforce development, home and community-based services, long-term care, caregivers, research, brain health, data collection, safety, legal issues, and state government structure.
Another focus of the plans is public awareness; many organizations mark June as Alzheimer’s and Brain Awareness Month, with June 21 called “The Longest Day” to signify the long journey of the disease.
For advocates, the numbers tell the story:
Jennifer Rosen, director of state affairs for the Alzheimer’s Impact Movement, the advocacy branch of the Alzheimer’s Association, said the effort to build state plans began in 2007. In an interview with The American Journal of Managed Care®(AJMC®), she said state governments were not approaching the disease in a coordinated fashion.
“There was a huge learning curve. We as an association previously hadn’t been engaging state governments in a coordinated way,” she said. Rosen described the effort as a “specific, coordinated approach" to address Alzheimer, where the association would convene all of a state’s stakeholders together to conduct a needs assessment. Importantly for states, it gave participants to discuss the public health angle of the disease.
“Because state governments really weren’t aware of the public health crisis…they weren’t aware of the numbers of families affected in their state, they weren’t aware of the impact of the disease, and even looking at the trajectory, the impact and the cost of the disease on state government itself,” she said.
Depending on the disease stage a patient is diagnosed in—there are 3—and other individual factors, someone may need long-term care for many years, Rosen said. “We talked about it as being the most expensive disease in America. And that’s calculated when you look the Medicare and Medicaid costs,” she said.
The first plans started to be published around 2009 to 2011.
Some of those first waves of states have now updated their plans to the second iteration, and nearly every state has gone through at least 1 round. Some states are establishing a dementia coordinator position to oversee plan implementations to ensure that “everybody is talking and that nothing is slipping through the cracks as far as meeting the needs of people with dementia and their families,” Rosen said.
While governments are known for writing reports and plans that never get implemented, in this instance 1 state has gone farther than all others by enacting the plan into law and becoming the first state in the nation to require provider training.
In August 2018, Massachusetts enacted, with bipartisan support, a bill that requires physicians to receive 1-time training at the time of their renewal of their certificate of registration. The training must include, but isn’t limited to, Alzheimer disease and dementia in regards to diagnosis, treatment, and care. The training requirement extends to physician assistants and nurses, as well.
The bill was sponsored by Representative Danielle W. Gregoire, a Democrat, who told AJMC® that the state legislature created an omnibus bill out of many separate proposals. The resulting Alzheimer’s and Dementia Act requires that a provider must tell the patient or family about the diagnosis and provide them with the care plan.
“There are doctors that are reluctant [to tell], and there are also certain situations in which the doctor wouldn’t, say in an emergency department situation, where a doctor wouldn’t want to take that on where they weren’t the primary care doctor and they didn’t feel like it was there responsibility,” Gregoire said.
There is another issue, she added, one where perhaps an individual was diagnosed previously, “but they’re personally not aware of it and that’s where the requirement comes in to share it with the legal representatives or caregiver.”
However, the bill does not address direct care aides, she said. “That’s a whole other crisis that we’re trying to deal with in Massachusetts,” Gregoire said, and said the state is considering options to try and create career paths, educational opportunities, and pay a living wage.
The median annual income for these workers, who provide the bulk of hands-on care, is $13,000, according to PHI, a non-profit institute that works to promote quality long-term care by improving the lives of the direct-care workforce. At that salary, home health agencies compete for low-wage workers who could be working in less stressful retail or food service jobs, as opposed to caring for individuals with complex healthcare needs.
“The number of hours that are approved by insurance companies for home healthcare aides that go unfilled because we don’t have enough workers have quadrupled over the last 10 years,” Gregoire said.
As part of the law, Republican Governor Michael Baker created an advisory council, which will keep making recommendations on legislation that could be acted on in the future.
The bulk of caregiving is provided unpaid, or in what those in the field call “informal” care. Last year, more than 18.5 billion hours of informal care was provided by caregivers at a value of nearly $234 billion. Most of that care was provided by women.
Unless an individual or family has saved enough cash or had the foresight to purchase long-term care insurance before illness hit, Medicaid is the usual payer for the long-term care services that patients can require in the later stages of disease. In 2019, total Medicaid spending for people with Alzheimer or other dementias is projected to be $49 billion. Last year, 1 year in semiprivate room in a nursing home reached about $89,000.
“We’re really concerned about the looming direct-care workforce shortage, the shortage of projected primary care physicians, the current shortage of neurologists and geriatricians,” said Rosen. “And then of course the direct care workforce, when we’re talking about nursing homes and assisted living, home health aides, adult day centers. We see the projections, and the looming workforce shortage is state-by-state.”
Another focus of the plans is early detection, which provides a chance to rule out other possible illnesses that could be causing symptoms such as memory loss, confusion, and forgetfulness, and allows the patient and caregivers to find support and education. It also allows a couple or family to do some financial planning, if they haven’t done so already. It allows the patient to create an advanced health directive spelling out what kind of life-prolonging care they do and don’t want as the illness progresses. For instance, a feeding tube in the last months of life of someone with Alzheimer disease used to be somewhat more common, but it has dropped from nearly 12% in 2000 to less than 6% in 2014.
Earlier this month, the Alzheimer’s Association released a survey that found nearly 9 in 10 Americans would want others to tell them if they were showing signs of memory loss or other issues with cognition. However, nearly 3 in 4 Americans said that having those conversations is challenging.
“We focus heavily right now on the importance of early detection and diagnosis that early detection and diagnosis allows for care planning," said Rosen. "And really working to address the needs of both the individual and the family members living with this disease showed to put their proper care plans in place. That they understand the different stages of the disease and understand how to tap into or access services they may need at any given point. Care planning is just as important for families as it is for the affected individuals."
For a legislator like Gregoire, whose grandfather died from the disease 2 decades ago, the issue resonates with people no matter what their political background.
“I believe that you’d be hard-pressed to find someone in most any room that doesn’t have a personal connection," the state representative said.