As researchers struggle for Alzheimer’s cure, lawmakers enact flurry of bipartisan bills

Hundreds of thousands of Wisconsinites are living with Alzheimer’s, the most common form of dementia. Lawmakers are crossing the aisle to come up with solutions to support the economic and emotional burden those affected and those caring for loved ones with the disease face every day.

As researchers struggle for Alzheimer’s cure, lawmakers enact flurry of bipartisan bills

Over 110,000 people in Wisconsin are living with Alzheimer’s disease, the most common type of dementia.

While there is no cure and the number of people suffering from the disease is only expected to increase, researchers at UW are pushing to help ease the burden the cognitive disease causes.

Wisconsin lawmakers have been hard at work proposing legislation to help those with Alzheimer’s. Most recently, Gov. Scott Walker included $100,000 in the state’s two-year budget for UW’s Alzheimer’s Disease Research Center, one of 33 federal research institutions dedicated to finding a cure.

Alzheimer’s is a type of dementia that worsens over time and typically affects people 65 years old and above. Naturally occurring proteins in the brain malfunction and clump together, blocking cell’s messaging path — destroying memory and other mental functions, like the ability to speak.

The disease affects one in three elders, and is the sixth leading cause of death among people in that age group. Early onset Alzheimer’s can affect people as young as 40 and the symptoms develop rapidly.

While other major causes of disease have decreased in frequency over the years, like heart disease, Alzheimer's has increased. Currently, 5 million Americans are living with the disease, with that number expected to rise to 16 million people by 2050.

“When you get older some memory loss is normal, but when loved one constantly forgetting where they put things...or names of friends, or getting lost easily — those are real signs,” said state Rep. Dianne Hesselbein, D-Middleton.

Including Walker’s $100,000 proposal, the Joint Finance Committee approved $3.6 million toward researching the disease, as well respite care and dementia care specialists in budget amendments. Dementia care specialists connect families to resources that exist for them and support those living with dementia.

Part of the increased funding went toward adding positions to rural areas that are often underserved compared to metropolitan areas, according to state Rep. Mike Rohrkaste, R-Neenah.

These ideas are byproducts of a task force created by state Assembly Speaker Robin Vos, R-Rochester, which toured the state learning more about the disease and ways to help Wisconsin families struggling to care for loved ones with Alzheimer’s.

Rohrkaste chaired the task force with Hesselbein acting as vice-chair. Both lawmakers lost a parent to the disease.

The task force has since concluded after three out of the group’s 10 proposed bills were signed into law. The approved legislation created a report of a dementia crisis unit pilot program, funded an adult day care that caregivers can place their loved one or a few hours and issued grants for a mobile crisis team to train people to recognize a crisis involving someone with dementia.

Legislative ideas gathered by the group continue to influence policy today, with lawmakers re-introducing bills this session that were first proposed in 2015.

Last month, state Rep. Ken Skowronski, R-Franklin, introduced a package of seven bills that in part aims to ease the financial burden on the individuals who have to leave their job to care for someone with dementia. Other proposals would improve end-of-life care, ensure law enforcement check in on elders who have previously been reported as lost, and increase awareness of resources available to caregivers.

Economic toll

This year, Alzheimer’s and other forms of dementia cost the nation $259 billion. That number is expected to increase to $1.1 trillion by 2050. In Wisconsin, the state spent $687 million for Alzheimer’s care — despite 193,000 caregivers going unpaid.

Just this month, Bill Gates dedicated $50 million to find a cure.

In comparison, the $50,000 allocated each year of the two-year state budget may seem meager. But for legislators — and researchers — the state support has a broader meaning.

“While it may seem like a small amount, I think [the funding is] a positive symbol and can be of help,” Rohrkaste said. “You never know when one $50,000 grant leads to another $50,000 grant and maybe that will then put [researchers] over the hump to either improve diagnosis or eventually create a cure.”

The $50,000 dollar amount came from a bill Hesselbein proposed during her time on the task force. A researcher at UW’s Alzheimer's Disease Research Center spoke with Hesselbein after $50,000 in research funding was cut as part of Walker’s 2015 budget.

The new influx of money this budget will help researchers leverage the federal funds, which could bring hundreds of thousands of dollars, according to Hesselbein.

In the meantime, the money will go toward studying the blood of people who have Alzheimer’s. Researchers believe there is something in the blood platelets that might help them determine who’s getting Alzheimer’s and why. Scientists also are examining indicators that can help doctors catch the disease early.

Campus efforts

Keeping people with dementia active is one suggested way to slow down cognitive decline and improve quality of life, according to Rohrkaste.

At UW-Madison, students are doing just that. Members of Advocates for Alzheimer’s, a campus organization, volunteer their Saturdays working with residents with dementia at the Capitol Lakes Retirement home.

For some of the older residents with family who live far away, these students are the only visitors they’ll have for months.

“That’s the highlight of [resident’s] week,” said Laura Lettenberger, president of Advocates for Alzheimer’s. “Workers always say afterward how the residents are in such a better mood.”

Lettenberger got involved with the Wisconsin chapter of the national Alzheimer’s Association in high school. Lettenberger has since met with House Speaker Paul Ryan four times to discuss Alzheimer’s related issues.

Most recently, she and Ryan talked about increasing funding for caregivers. Ryan is personally affected by Alzheimer’s and, along with his mother, acted as one of his grandmother’s caregivers.

There’s a critical lack of funding for people caring for those with Alzheimer’s. The stress associated with providing care often results in health problems for the caregiver. For Lettenberger, her grandfather had a heart attack from the stress of caring for her grandmother, who had early onset Alzheimer’s.

To help lessen the load caregivers carry, the state also approved a million dollars for respite care.

Although state lawmakers have committed increasing resources to supporting caregivers, they remain optimistic that a cure could be found in the near future to render those efforts moot.

“With stuff we learned from the task force it wouldn’t surprise me if something from Wisconsin could be popping on it,” Hesselbein said. “With $50,000 we could be on the map.” 

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