Living with dementia: Nebraska plan may provide support
Story, video and infographics by Mekenzie Kerr, NewsNetNebraska
(Editor’s note: LuAnne Anderson died in January, 2017. Her death ended her suffering and closed a bittersweet chapter for her husband Brad who loved his wife, eased her suffering and is still helping other Nebraskans who are going through similar circumstances as they live with Alzheimer’s and other forms of dementia.)
When 61-year-old LuAnne Anderson was diagnosed with semantic dementia in 2010 there were few places she or her husband Brad could turn for help. Few people could tell them what to expect next, or where to find support for a condition that only grows worse.
“The diagnosis caught us off guard,” Brad Anderson said. “We were ignorant and did not feel we had a lot of resources to pull from afterwards.”
Today, thousands of Nebraskans diagnosed with Alzheimer’s Disease and other forms of dementia face a similar dilemma. There is no statewide plan to help them or their caregivers as their memories decline and other thinking skills diminish to the point they struggle to perform everyday activities.
Eventually, Brad Anderson contacted the Alzheimer’s Association for help with his wife’s diagnosis. Six years later, he’s an ambassador at the Alzheimer’s Association’s Lincoln office where a statewide plan for people with Alzheimer’s Disease and other forms of dementia is finally taking focus.
The Alzheimer’s Association has been working to identify support programs and services that could cement Nebraska’s status as a dementia-capable state. Those resources are part of a State Plan For Alzheimer’s Disease and Related Dementias that goes before the Nebraska Legislature in 2017. If passed by state lawmakers, the plan will provide in-depth help and resources for people living with dementia and those that care for them.
A growing urgency
Need for a state plan for Alzheimer’s and related dementias has become more urgent as diagnoses of the diseases have grown dramatically across the the nation.
According to the Alzheimer’s Association, more than 5 million Americans are living with the disease; by 2050 that number is expected to swell to 16 million people. In Nebraska, 12.7 percent of older/aging adults have been diagnosed with Alzheimer’s (about 33,000 Nebraskans). It’s the state’s sixth leading cause of death. Such statistics underscore the growing importance of having a plan to help those living with dementia as well as their loved ones.
The proposed state plan will allocate safety programs, easily accessible resources and assistance to dementia patients and their caregivers.
For people like Brad Anderson, who play the dual role of family and caregiver, having such a plan will help ease the stress many experience while working through a dementia diagnosis and managing the growing future costs and needs of dementia patients.
The Alzheimer’s Association’s state plan
The Alzheimer’s Association’s Nebraska Chapter has offices in three cities across the state, and the Lincoln office has been particularly busy working on The Nebraska State Plan for Alzheimer’s Disease and Related Dementias. The state plan was proposed in last year’s legislative session. It’s currently undergoing modifications while the Lincoln office conducts interim studies. Approval of the plan may come at a state legislative meeting scheduled for January, 4, 2017.
The Nebraska State Plan’s designers include the Lincoln Alzheimer’s Association office and the Alzheimer’s State Plan Subcommittee of the Aging Nebraskans Task Force. The state plan began taking shape in 2014 when Nebraska lawmakers passed LB690 to create the “Aging Nebraskans Task Force.” In May 2016, Gov. Pete Ricketts signed LB 320 into law that started the current plan.
Three goals: Information, support, safety
The plan has three main goals, “Information” (to provide resources to Nebraskans living with dementia as well as their caregivers to help them manage their lives), “Support” (to provide individuals living with dementia and their caregivers the things they
need to maintain their health and well-being) and “Safety” (to ensure that Nebraskans living with dementia are safe).
“Information,” the first goal, was added to the Nebraska State Plan following The Alzheimer’s Association’s collection and review of polls sent to town halls. The Lincoln Office sent out the polls to town halls throughout the entire state but were particularly focused on reaching out to minority state senators, specifically those of varying races, with the idea to “build something diverse,” according to Alexandra Snodgrass, the public policy intern at the Alzheimer’s Association’s Lincoln Office.
These surveys and polls asked Nebraskans for their opinions on accessibility to information and services that aided with dementia diagnoses. After reviewing the surveys Snodgrass said the office was overwhelmed with the recurring comments that people “didn’t know who to contact or what the state resources were.” One participant commented that dementia is “uncharted territory.”
After gathering this research, the Lincoln Office created the “Information” goal to fix the problem by providing easily accessible and comprehensive information for Alzheimer and dementia patients and their caregivers. This goal is what Alzheimer’s Association ambassador, Brad Anderson, says would have helped after his wife’s 2010 diagnosis.
The second goal in the plan, “Support,” provides the tools and places to go to assist patients and caregivers. The “Support” category was added to the plan to improve provisions for mental, physical and emotional support/care for those affected by the disease including caregivers.
The third “Safety” portion of the plan includes the Silver Alert Program. Similar to the nationally-recognized Amber Alert Program, the Silver Alert would be a public notification system that broadcasts alerts when adults with dementia go missing. This is because Alzheimer’s patients lose their memory and ability to recognize their surroundings as the disease progresses.
Gerontology professor, Bede Bolin, at the University of Nebraska at Omaha teaches “Services and Programs for the Elderly” and believes there is a need for a program like this. “I believe it will help with the safety and security of older adults with dementia, but more importantly, family members and caregivers of individuals with older adults,” Bolin said.
The three goals of the state plan, say officials, were created to meet the growing needs of Alzheimer and dementia patients, their families, loved ones and caregivers. With the progression of the plan’s three goals, the Lincoln Office hopes to soon formalize Nebraska’s title as a “dementia capable state.”
Living in the moment
Which brings us back to LuAnne Anderson. She currently lives in an assisted care facility in Omaha. Almost every day of the week, Brad Anderson makes the 45 minute drive from Lincoln to Omaha to visit and spend time with his wife. Besides his busy work schedule and visits to LuAnne, Anderson began writing poetry. It’s how he describes his journey as the spouse of someone diagnosed with dementia. You can listen to one of Anderson’s poems by clicking here or in the “I Am With Her” video box above. He also speaks and shares his story on behalf of the Alzheimer’s Association.