JANESVILLE
A group of about 20 people could have shared stories all night if given the chance.
Their stories involved the challenges caregivers of people with Alzheimer’s disease, dementia or other forms of memory loss face, and there was plenty to discuss.
The Aging and Disability Resource Center at the Alzheimer’s Association of South Central Wisconsin hosted a caregiver pizza party Thursday evening for local caregivers.
Concerns shared at the gathering will travel with dementia care specialist Cori Marsh when she goes to Washington, D.C., next month to participate in the national Alzheimer’s Advocacy Forum.
She will also talk about the , an initiative in Rock County to provide information in purple tubes that law enforcement and emergency medical professionals use to assist those with memory loss in times of crisis.
Since the project debuted in April, a handful of counties have reached out to Marsh for more information, she said.
About 1,400 people from across the country will participate at the forum and speak to legislators about policy changes to help those with dementia and their caregivers, said Bonnie Nuttkinson, advocacy and program manager for the Alzheimer’s Association of South Central Wisconsin.
About 120 attendees will be from Wisconsin, Marsh said. Marsh and a few others will represent Rock County, Nuttkinson said.
Travel for the Rock County delegation is funded by a $3,000 grant from the Don Adee Alzheimer’s Disease Fund through the Community Foundation of Southern Wisconsin, Nuttkinson said.
Caregivers in attendance included teenagers and senior citizens. Some were caring for parents; others care for spouses.
A Beloit man who shared his story was diagnosed with Alzheimer’s at age 57. He will soon be eligible for Medicare and worries every day how he will provide medical insurance for his teenage daughters.
There are few resources to help families navigate early-onset Alzheimer’s, he said, especially those who have minor children.
His teenage daughters spoke about wanting more education in schools to address misconceptions young people have about memory-loss diseases.
It is important for caregivers to share their stories, Marsh said, because they help people understand the challenges they face.
How caregivers participate in the workforce was a common concern Thursday night. Multiple people mentioned the difficulty they had in trying to balance a job or after retiring early to help care for a loved one.
Providing care is an around-the-clock job that is life-changing for many because dementia does not take days off, Marsh said.
Caregivers also called for more uniform standards for long-term care facilities.
They also learned of resources available to them to ease the stress of being a caregiver.
Marketing such resources needs to improve, Marsh said, and advocating at the national forum next month could be the push needed to show more caregivers they are not alone.
