Action on Alzheimer’s and Dementia – Two Opposites Team Up to Work on the Cause

Rep. Mike Rohrkaste, R-Neenah, and Rep. Dianne Hesselbein, D-Middleton, are on opposite sides of the political aisle, but they share a similar experience that has connected their work: They both lost parents to dementia and Alzheimer’s disease. The two led a special task force to examine these growing health issues and their effects in Wisconsin. That resulted in 10 bills, three of which were signed into law, including increased funding for respite care, training for mobile crisis teams and a pilot program for a dementia crisis unit. They share what’s next in this edited Q&A.

Why focus on this issue? 
ROHRKASTE: It’s very compelling because there are about 110,000 state residents who are suffering from the disease and probably about 191,000 people are acting as caregivers in some way. It’s the sixth or seventh leading cause of death in the U.S. and the only leading cause in the top 10 that continues to increase. It’s starting to also show up in people in their 50s. There are some issues of it being hereditary. Also, if you have multiple head injuries and concussions, you’re more prone to developing dementia. Certain ethnic backgrounds and minority groups are more subject to it; women are more subject to dementia than men.

There is money in the state budget for Alzheimer’s research. How important is that? 
ROHRKASTE: There are two areas of research that are critical. One is obviously a cure, and the other is getting better at diagnosing it. The UW System is working on ways to better diagnose it earlier.

HESSELBEIN: If you think of Alzheimer’s as a roller coaster—if you get that diagnosis, you know what the end is going to be, but it’s how dramatic the ride is going to be. If you can get the medications in place early and those lifestyle changes, it can be the help you need to slow that progression.

Outside of those budget items, what do you think should be worked on here? 
ROHRKASTE: It’s a much more complicated issue and it has to do with people with dementia who exhibit more challenging behaviors, meaning either aggression, destruction of property or even hitting somebody—a family member or caregiver in a nursing home. It gets into some legal issues of commitment. The nursing home has to protect other residents. They can’t be sent to a mental health facility because of the way the laws are structured in the state, so sometimes there’s not a good alternative. They could end up in an emergency room, or end up in jail if it’s a potential crime. Or they might have to be moved out of that nursing home to another facility, maybe very far away from their family.

How do personal experiences inform how you craft this kind of legislation? 
HESSELBEIN: It’s huge. Caregivers need a break and more money is needed for respite care. My dad passed and within a year my mom had a heart attack. My two siblings and I were living in Dane County and would each take a day and help out my mom and dad. When Rep. Rohrkaste and I started talking about a dollar amount to try to help caregivers get that respite break, we shot high not knowing if we would get it. So we were hopeful and we got the full amount. So that was great knowing that caregivers can get respite because they need a break to take care of their own health. I saw it personally with my own mother, how her health declined because she put my father first for so long.

ROHRKASTE: My mom suffered from a form of dementia. It was never formally diagnosed, but she declined pretty rapidly … I wish I would have understood more about the disease, how to help my mom better or get her better resources.

Jessica Arp is the political reporter at WISC-TV.

Learn more: