Living their reality: Washington faces growth of dementia and lack of resources

Bill Baker and his wife Charlynne were making plans to retire early and sail the Caribbean when they discovered Charlynne was suffering from early stages of Alzheimer's in 2006. Since then, plans to travel have disappeared and Bill joined the Washington Alzheimer's association to confront the issues the state faces in helping people walk through dementia.

Bill Baker thought it was silly when his wife lost her CD case in the refrigerator. It was strange when she stopped talking mid-conversation. It was terrifying the first time she had a car accident with no explanation.

Baker’s wife, Charlynne, had early onset Alzheimer’s Disease. She was only 52.

When the Washington couple first saw signs of the disease in 2004, they went to their general practitioner in the Tri-City area. They were told it was stress-related and prescribed rest.

A year later, they sought a second opinion. Again, they were told it was stress.

“I was watching her change, she felt it too,” Baker said. “We needed answers.”

The couple moved to Arizona to tap into the state’s resources on dementia.

In 2006 Charlynne was diagnosed.

More than 5 million Americans have some form of dementia, and that is predicted to jump 40 percent by 2040.

Within Washington, more than 108,000 people have been diagnosed with dementia so far this year. The state is ranked third in the nation for its high number of dementia-caused deaths.

A study by the Washington State Chapter of the Alzheimer’s Association predicted the state’s population will face nearly a 50 percent increase in dementia cases in just 15 years.

While Washington is in the process of forming a plan to address the social and economic impacts of dementia, it is one of the last states to do so.

Chris Wright, spokesperson for the State Department’s Aging and Long-Term Support Administration, said Washington fell behind on the issue.

“The numbers are growing so rapidly,” Wright said. “It’s like a silver tsunami.”

He attributed part of the issue to the baby boomers generation reaching their 60s and beyond. While growing older isn’t a given for the disease, it is the most common factor — an unnerving truth for a state where its largest growing population is 85 or older.

As a result, Gov. Jay Inslee mandated the formation of a statewide plan in 2014 that would address the economic and social issues attached to the disease.

At the time, Washington was one in nine states without a plan.

The Alzheimer’s Association’s state chapter released the draft plan on Sept. 5.

Bob LeRoy, executive director for the state’s Alzheimer’s chapter, said while the state had a good reputation in healthcare, dementia wasn’t a priority until it became a national epidemic.

“It’s a strange imbalance,” LeRoy said. “Last year, Washington was one of two states to see a decline in nursing home enrollments, showing a state-level push to help seniors. But on the other hand, the need to address dementia was largely ignored.”

The combination left many of the 320,000 family caregivers throughout the state feeling isolated.

In a 2014 study by the Alzheimer’s Association, one in five Washingtonians reported that when they were told their loved one’s had dementia, they weren’t given information about how to deal with it. Only 14 percent of the people said they were given information about community resources, and one in 10 said they were referred to an Alzheimer’s organization.

“Most of our aging population is in rural Washington,” LeRoy said. “But getting the tools they need to deal with the disease has been a challenge.”

LeRoy said the plan outlined ways for existing programs to collaborate to extend their services into the underserved parts of Washington.

The plan also prioritized educating people about dementia. With a growth of awareness, he said it will be easier to reach legislative members to champion for funding in the 2017 state budget allocation.

“We have the resources out there, their reach is just not wide enough,” LeRoy said. “That needs to change now.”

Baker didn’t know anything about Alzheimer’s when he became his wife’s 24/7 caretaker.

After the couple found their answer in Arizona, they moved back to the Tri-Cities area to be close to family.

“I learned how to deal with her symptoms as they developed,” he said.

Baker left his job in the corporate world. He sold the 5,000 square foot home the couple designed together to live in a smaller, less overstimulating house. He started guiding her to the restroom when she forgot where it was. He learned after dressing Charlynne in her nightgown, he had to pull the covers down to remind her how to get into bed.

After he realized the challenges Washington faced, Baker joined the state’s Alzheimer’s chapter as a board member. He also served on the team to develop the State Plan.

“People facing this need a road map that outlines where to get help,” he said. “We don’t even know what we’re looking for, let alone where to find it.”

Before Charlynne was diagnosed, the couple planned on retiring early to sail around the Caribbean.

“She was radiant,” he said. “She loved every adventure.”

As he talked about who his wife was, she watched baseball in the next room.

Their plans to travel disappeared. They spend most days in their house , in the company Netflix. Since Baker had to quit his job before retirement and support a new set of medical bills each month, their finances are drying up.

“I’ve put my life on hold,” he said. “But that’s what I want to do. I adore her and will make sure she has the best life possible until the end. But like any caretaker, I need to know they’re tools I have to do that.”

NEXT WEEK: Long Beach Peninsula residents confront the complexities of living with Alzheimer’s.

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