Curing dementia the best solution
Editor’s note: This story is part of an ongoing series by Jalen Knuteson looking at Wisconsin’s long-term health care crisis. To see other articles in this series, click here.
The goal for the Alzheimer's Association was to find a cure for dementia-related diseases by the year 2020. The organization has recently moved its ambitious vision back to 2025.
Because of the costs the disease incurs and the pain it causes families, the association sees finding a cure as the only solution.
In 2016, an estimated 5.1 million people lived with the disease. By the year 2050, that number is estimated to increase to 16 million people.
If the human burden isn't enough to raise concern, the financial burden should be as the cost of caring for Alzheimer's patients is expected to rise from $236 billion in 2016 to $1.1 trillion in 2050.
For these reasons, the forward-thinking Alzheimer's Association is being proactive in funding research to halt or inhibit unnatural declines in brain functionality.
"There is no pot of gold to cover care for the disease," Program and Advocacy Director at Alzheimer's Association Greater WIsconsin Kathy Davies said. "We believe that the best plan is to find a cure because there will not be enough money to cover the health care for all people that need it."
Dementia is not part of the normal aging process. When people age, the brain degenerates; but when people age with dementia, the brain degenerates even more.
With urgency, the Alzheimer's Association is looking for long-term solutions.
Rep. Mike Rohrkaste (R-Neenah) has introduced bills that have been signed by Gov. Scott Walker to help people living with dementia. He has published statements expressing the importance of investing in UW-Systems research to find a cure. Rohrkaste is the head of the Joint Finance Committee and was Chairperson on Speaker Robin Vos's Task Force on Alzheimer's and Dementia.
Rohrkaste said he was happy with the 2016 legislation passed in reaction to a growing need in Wisconsin, which helped counties create dementia crisis units; provided $1 million to offer respite to in-home caregivers in the state; and $250,000 of grant money to help employers train their workers to provide dementia-friendly services.
"These acts are important because they help the (caregiver) keep the person in their home longer," Rohrkaste said. "(The legislation) makes it better for the person in need of care and it helps the caregivers."
Funding for programs to help communities become more dementia friendly is a solution that Rohrkaste said the state congress would look at in the next budget.
Even without funding, St. Croix County dementia specialist Nancy Abrahamson said forming dementia-friendly communities is something that can be done without major grants.
"People with dementia need help getting human interaction," she said. "Human interaction is about drawing out the other person and then finding things that you want to do together.
"It doesn't take federal or state grant money to want to do that."
Incentivizing grocery stores and banks to become dementia friendly would provide a major boost to the quality of life for any community member with dementia, but it is not the only way that lives with dementia can be improved.
Former Wisconsin Gov. Marty Schreiber said dementia is not a "Chicken Casserole disease." Schreiber said that if a person hurts their hip or has surgery, people know to bring casseroles and other meals to help them heal.
Meals, support and socialization that come when a person battles cancer doesn't come as often for people suffering from dementia.
"People do not understand enough about Alzheimer's, so they don't know what to do," Schreiber said.
Schreiber was one of an estimated 15.9 million people providing a friend or family member care living with dementia as he cared for his wife Elaine. Schreiber wrote My Two Elaines to help caregivers and the public understand what it is like to have a loved one suffer from dementia.
He also offered suggestions for caregivers.
"The caregiver cannot do it alone," Schreiber said. "A caregiver has a chance of dying earlier from other diseases and stress related with caregiving. "They very well have their job at risk. If people, friends and neighbors and relatives, if they can begin to understand what the caregiver is going through, there can be more of a community effort to help the person and caregiver."
With these reasons in mind, Rohrkaste and fellow legislators reacted with legislation to offer respite for caregivers.
Whether expansion was likely to occur in the next biennial budget was not certain.
"(The Joint-Finance Committee) has to wait until we look at the Governor's budget," Rohrkaste said. "Then it will fall into a prioritization in the budget process."
Assets in local communities
Having a healthy heart is among the most important New Year's resolutions you can make.
That's an ambiguous statement, but it was meant in the physiological sense.
The American Heart Association and Alzheimer's Association are connecting the two with their Healthy Heart, Healthy Brain initiative.
The goal is that if you take care of your heart, your brain will be healthy as well. If your brain is healthy, the modifiable risks associated with Alzheimer's and other forms of dementia can be reduced and/or eliminated.
"We need to start talking about prevention early in people's lives," Pierce County Public Health officer Sue Galoff said. "Dementia can be devastating for individuals and their families. It's something that a community needs to focus on early."
Collectively, Galoff thinks the county can have success combatting the disease.
"Our communities are close-knit and care about each other," Galoff said. "The ability to be a dementia-friendly community is a strong possibility here. By creating the awareness and talking about it, people may not be afraid to seek treatment if they have symptoms."
Usually the whole, everybody-knows-everybody town is meant as a slight for being too small. Small communities can offer help for people suffering from dementia by looking out for each other and simply by being kind.
In November, the Pierce County Herald highlighted Ruth Hartung for her 41 years as a cook at the Plum City Care Center. One of her many strengths was her ability to have special conversations with residents that other staff members — especially staff members that did not have roots in the area — could not have.
With dementia, the trick is to pull out memories that people didn't realize they remembered.
"Helping someone with dementia can be all about how you facilitate a conversation," Abrahamson said. "We all have the ability to listen. ... Really what we need to train is good communication skills."
Abrahamson travels around St. Croix County assisting local businesses in becoming "dementia-friendly." Training employees to recognize when a customer may have dementia is a major part of the business having success as a business. In a small community, it could be even more valuable for a business to recognize who the customers are who have dementia and how they can better assist them.
"It definitely gives the small community providers of services an advantage, but the well isn't as deep for resources as it is in (bigger communities)," Spring Valley Health & Rehab administrator Kevin Larson said. "On the front end, there is a great support network that can't be identified or quantified, but people can only help for so long. It's awesome because you won't really see it in (bigger communities).
"But on the back end, smaller communities are having a tougher time overcoming the challenges."
The state government has expanded its funding of Aging and Disability Resource Centers in the state, but it only goes so far.
As the state government attempts to alleviate the pressures of the long-term care crisis through a variety of support groups and a commitment to community, small towns can overcome some of the challenges.
The goal for most people is to stay out of assisted living facilities and skilled nursing facilities as long as they can. Usually cost is the leading factor.
The Alzheimer's Association has that exact factor in mind when they offer support groups, workshops and trainings for people to learn how to care for a loved one with dementia.
"We know the costs (of long-term care) are exorbitant," Davies said. "We want to help people safely care for family members to reduce the financial burden.
"We want families to be the best caregivers that they can be and hopefully we can postpone the cost that is undoubtedly part of the disease."