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Frustrated by lack of dementia care options, Twin Cities family decides to build their own

Star Tribune - 1/20/2019

Jan. 19--Almost from the moment Jerry Parks was diagnosed with early-onset Alzheimer's disease, he began changing the status quo.

He was 56 at the time, and about a decade younger than all but 5 percent of those with dementia.

At the adult day center he attended, Parks insisted the staff stop reading the newspaper out loud to him and others when they were perfectly capable of reading it themselves.

Parks became an activist. He met with lawmakers, spoke at national gatherings of the Alzheimer's Association and pushed for better Social Security disability benefits for people with various forms of dementia.

During the past decade, as his disease progressed, Parks and his family grew increasingly frustrated, frightened and disillusioned with the current state of long-term care support for people with dementia. They rejected the nursing-home model of memory care, where people with late-stage dementia live out the last of their lives in an institutionalized setting.

"We've seen lots of different stories play out," said Parks' wife, Karen. "None of them were the story we wanted."

So they decided to build their own.

Last fall, the family broke ground on Parks' Place, a single-story building with high ceilings and plenty of windows, that will house 36 residents with dementia. It is scheduled to open this fall.

The family bought a 4.6-acre parcel of land for $589,000 in 2017 and worked with the city of Plymouth to rezone it for multifamily living, in the process quelling concerns of a few neighbors in nearby condominiums. They partnered with Minneapolis-based Augustana Care -- an established senior housing and long-term care services nonprofit -- to manage the $5 million project.

Programs at Parks' Place will focus on providing family support as well as care for people in the early and middle stages of dementia. It will include occupational therapy as well as cognitive programming.

"Jerry said, 'Don't assume disability when we still have ability,' " Karen Parks said. "That huge piece has resonated through our whole family."

Kathy Kopp, vice president of new business at Augustana Care, said when Karen Parks contacted the organization, she recognized right away a melding of philosophies and a chance to create more innovative models of care.

"We believe it's a market and a service that's needed in the Twin Cities," Kopp said. "It's a holistic approach based on the person's ability and embracing family and relationships."

Most residents will have their own bedroom and bath, with common kitchen areas and gathering lounges that will look and feel like a home.

Most residents will be private pay, but Parks' Place will have some shared-room options covered under Medicaid's Elderly Waiver program for low-income seniors, Kopp said.

Augustana expects to fill 40 new full- and part-time positions.

Early-onset Alzheimer's is an uncommon form of dementia that strikes people younger than 65. Of all the people who have Alzheimer's disease, about 5 percent develop symptoms before age 65, according to the Alzheimer's Association.

Parks grew up in Cloquet, Minn., and was a ski jumper in high school. He was a vice president at Mortenson Construction when symptoms began in his early 50s.

"It shook our world," Karen said.

The two met in their 20s and married after a nine-month courtship. The couple have three daughters and a son. At the time of his diagnosis, two were in college and two were in high school. Karen went back to work.

Parks, now 68, wears a big smile and offers a firm handshake, and is still living at their Plymouth home. Karen retired two years ago from a job as a special-education teacher in the Hopkins school district when caregiving duties became more demanding.

The couple have 10 grandchildren and one on the way. The two are planning a trip to Costa Rica this spring.

"There is life after diagnosis," Karen Parks said.

Asked whether she thinks Jerry will end up living at Parks' Place, she nods.

"Both of us," she said.

Her mother and grandmother also had dementia. "It's just a matter of time."

As she measures the odds, Karen Parks said the prospect of improving institutionalized memory care provides her family hope and motivation.

"Nobody was talking about this 12 years ago," she said. "I envisioned a place in Plymouth where the grandkids could get off the school bus and run in and see Grandpa. A place for families where kids and spouses and children will feel comfortable."

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