When Mary Lindgren lost both of her parents to Alzheimers within a couple of years, she thought her "Alzheimer’s story" was the worst.

Lindgren, now 60, spent two years caregiving for both of her parents as they rapidly declined. She felt isolated, and had no support network to draw on.

"Once you lose both your parents, your foundation, you feel helpless," she said. "Some people live for 10, 15 years with the disease. My parents got the diagnosis and were gone in two."

When she joined the Alzheimer’s Association, though, she learned that her "horrible situation wasn’t unique."

"It’s devastating, and I thought I was by myself," Lindgren said. "(But) there’s a lot of us out there and everyone’s story is as devastating as mine."

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Now the Austin resident wants to help ensure that no one else fighting the disease is as alone as she was.

Lindgren became an ambassador, and spent much of last week lobbying for increased funding in Minnesota and nationwide, to create a public health infrastructure for Alzheimer’s patients and their caretakers.

"This was something I could do to make up for the loss," she said.

Purple at the Capitol

Lindgren and other ambassadors for the Alzheimer’s Association visited Congressman Tom Emmer and Rep. Jim Hagedorn last Tuesday at Capitol Hill.

The advocates, draped in purple sashes, visited legislators from all 50 states between March 31 and April 2.

Ten years ago, Lindgren said, there were barely 24 ambassadors. Certainly not one from each state. But last week, nearly 1,250 people spoke to their congresspeople and representatives.

The Alzheimer’s Association asked for more federal funding for research on the deadly disease this year, as well as legislative support for the Building Our Largest Dementia (BOLD) Infrastructure for Alzheimer’s Act, which was passed last year.

Alzheimer’s research is hugely important, and could lessen the public health costs of the disease, Lindgren said. The association asked for $350 million this year — the number recommended by the National Institutes of Health (NIH), Lindgren said.

Cost considerations

Alzheimer’s, the sixth leading cause of death in America, is the most expensive disease in the country.

According the Alzheimer’s Association, 2019 spending is about $3.67 billion in Minnesota, with total costs that will surpass a quarter of a trillion dollars ($290 billion) nationwide.

But while lowering taxpayer costs is important, the BOLD initiative is crucial, Lindgren says.

"It would give a road map for us," she said. "For the general public, physicians included."

The BOLD Act attempts to fund Alzheimer’s Centers of Excellence and support the needs of caregivers and their loved ones with dementia.

Hopefully, Lindgren said, some of that funding would go toward support groups for caregivers.

"Right now, it’s kind of the wild, wild west of medical care," she said. "People can be told they have Alzheimer’s, or someone has dementia, then be left to fend for themselves. Like I did. We need to have a plan for how families are going to get through it."

The Alzheimer’s Association hopes the legislature will appropriate the $20 million needed to fund BOLD over the next five years. Those goals will have to wait, though, until Congress appropriated FY20 funding.

More than 5 million - the number of Americans living with Alzheimer’s today.

97,000 - the number of Minnesotans with Alzheimers.

255,000 - Minnesotan patients’ unpaid caregivers