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Looking Ahead at Alzheimer, Dementia Growth Trajectory, States Try to Plan Now for Future Care Needs

Allison Inserro
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:
  • Of the 5.8 million people who have the disease this year, the majority—81%—are age 75 or older.
  • Since it is a disease of aging, that number is expected to grow from 55 million in 2019 to 88 million by 2050.
  • In 2019, it is estimated that Alzheimer disease and other dementias will cost $290 billion for healthcare, long-term care, and hospice care, according to the Alzheimer’s Association.
  • By 2050, that cost could rise to $1.1 trillion.
  • Over the next 6 years every state in the country is expected to see an increase of at least 12% in the number of people with Alzheimer disease, with the hardest hit states in the West and Southeast.
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.

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