Editor’s note: Over the past two months, reporters from CNHI newspapers nationally have been exploring the many painful aspects of dementia, its impacts, costs and possible treatments, in a special report that continues today.
Indiana Rep. Greg Porter has two jobs. One is serving his downtown Indianapolis district at the statehouse. The other is taking care of his 94-year-old mother, who has Alzheimer’s disease.
Since her diagnosis five years ago, Porter and his daughter have tended to her at home. He’s learned to be patient when his mother acts agitated, and he always agrees with what she says to avoid upsetting her.
In that time, Porter has also learned that families like his need more help to care for their loved ones, and he believes the state could be doing more to fill that gap.
That’s why he introduced legislation this year that creates a program to put a dementia care specialist in each of the state’s 16 local aging agencies to be the go-to person for all things Alzheimer’s.
Dealing With Dementia
When lawmakers approved the bill in committee, Porter dedicated his vote to his mother. To his surprise, four other lawmakers also cast their “yes” vote in honor of a loved one with dementia in a rare showing of bipartisanship solidarity.
“It did my heart good to hear that,” Porter said. “Positioning ourselves to have the caregivers and the specialist and the coordinators in place will be really pivotal in addressing this disease, which is only going to continue to grow.”
Indiana joins a cadre of states making a mad dash to beef up Alzheimer’s care as the number of Americans with the disease is projected to skyrocket to nearly 14 million by 2060.
That includes states doling out unprecedented amounts of funding to new programs and initiatives targeting what health experts consider to be one of the fastest growing public health crises in the nation.
Michigan is not in this group.
Melissa Seifert, the associate state director of AARP’s governmental affairs, told Bridge Michigan last year, “Michigan continues to rank worse than many other states in terms of the large proportion of taxpayer dollars we spend to provide care in nursing homes, compared to the smaller share of resources that go toward providing long-term care for older adults through home and community-based services.”
She said 68.5% of Michigan’s Medicaid spending for long-term services and supports goes to pay for care in nursing homes, “instead of in people’s homes, where they want to be.”
The reality is that most people, at some point in their lives, will be caregivers or cared for. But people don’t always think about it, particularly when they’re not serving as a caregiver.
In 2022, many state governments set an all-time record by approving nearly $178 million in dementia-specific funding.
That represented an 8.6% increase in total funding across 35 states — including Georgia, Alabama, Illinois, New York, West Virginia, Massachusetts, Pennsylvania, Mississippi, Minnesota, Texas and New Hampshire — and the District of Columbia from the previous year, according to the Alzheimer’s Association. Four other states, including Tennessee, also appropriated tax dollars for the first time to the disease.
The Centers for Disease Control and Prevention this year also awarded 35 grants to implement the federal BOLD Act. The 2018 legislation funds state and local Alzheimer’s programs aimed at increasing early detection, reducing disease risks and preventing hospitalizations. Until this year, only nine states had received grant funding.
Add it all up, and the recent infusion of dollars into Alzheimer’s programs represents a stark shift from a decade ago, when few states paid any attention to dementia care, according to Jennifer Rosen, the Alzheimer’s Association’s senior director of state affairs.
“I’m really optimistic right now,” she said. “We’re definitely seeing a strong uptick in state engagement and state-level policy solutions to address the needs of individuals and families living with the disease.”
That includes 27 states in the past few years creating a state-level dementia services coordinator position to guide policy and funding. Lawmakers in five states approved the position within the past few months.
Of all the dementia policies a state could implement, a services coordinator is one of the most impactful, Rosen said.
“It’s almost like an umbrella for the rest … of our policy priorities,” she said. “It gets to every other piece of the puzzle.”
Some of the most important legislation impacting Alzheimer’s care doesn’t even mention the disease, according to Tyrone Bethune, a senior analyst on healthy aging for the Association of State and Territorial Health Officials.
Public health education that encourages exercise and good nutrition plays a major role in helping prevent the cognitive decline that comes with the disease, he said.
Mississippi has done especially well at getting that message to aging populations, he said. The State Department of Health has incorporated cognitive wellness into its coordinated chronic disease plan and also created an Alzheimer’s resource guide for older adults.
“Those states that have really made an effort to add more prevention efforts have really been rockstars in the field,” Bethune said.
In Georgia, lawmakers are taking a one-of-a-kind approach to increasing the early detection and diagnosis of dementia by partnering with universities and health care systems to operate the Georgia Memory Net.
The program in 2018 created five centers staffed with medical experts dedicated to early diagnosis. Primary care doctors receive a treatment plan on how best to care for their patients who are diagnosed with dementia at the centers.
James Lah, a neurologist at Emory University who directs Georgia Memory Net, said state policies encouraging early detection are more critical than ever after the Food and Drug Administration in July fully approved Leqembi. The drug slows the underlying cause of Alzheimer’s, but it can only be prescribed in the early stages of the disease.
“Diagnosis delayed is going to meet treatment denied,” he said. “These first rounds of encouraging and effective Alzheimer’s drugs will be meaningless if we don’t identify these people early enough.”
That urgency led Georgia lawmakers this year to increase funding for the program operated by the Department of Human Services from $4 million to $7 million.
Rosen, with the Alzheimer’s Association, said states are doing more than ever this year to bolster care and treatment. Even so, more is needed to ensure health care systems in every state can withstand the swelling population diagnosed with dementia.
“We still have a lot of work to do,” she said. “We really need to ramp it up as quickly as we can because every minute counts.”