Health: Groups find ways to keep dementia patients’ lives fulfilling

 9/24/2014

NAPERVILLE SUN, Judy Harvey, September 24, 2014 -  

"Anyone who has experienced a loved one living with dementia knows the frustrations of both the patient and yourself in trying to communicate and stay connected with each other in the same immediate world.

Dementia is different from just forgetting things now and then. It is a progressive disease that affects memory, thinking, behavior and the ability to perform basic tasks.

“Dementia is caused by damage to nerve cells in the brain, which are called neurons. As a result of the damage, neurons can no longer function normally and may die,” as defined by the Alzheimer’s Association.

Alzheimer’s disease is the most common type of dementia, accounting for up to 80 percent of dementia cases, according to the AA’s website.

One in nine Americans, or more than 5 million, over the age of 65 has Alzheimer’s disease and two-thirds of those are women. Every minute another person develops dementia, according to the Alzheimer’s Association.

The days of just letting those diagnosed with dementia slip quietly away as the family just tries to make them comfortable are gone.

Health experts are calling for more light to be shed on the disease and those living with it to remove stereotypes and enrich life experiences.

Locally, those who serve and care for dementia patients are committed to making the community more aware of the disease and ensuring their lives are fulfilling and active.

“Dementia does not mean the end of a purposeful life,” said Linda Wylder, administrator at Silverado Memory Care Community in Naperville.

Naperville resident Deborah Youtsey has been on a fast-track learning curve with dementia. In January, she became one of the primary caregivers to her mother’s long-time friend after the friend’s husband passed away.

“It’s been a real eye-opener for me (and my family). Before this experience, I didn’t understand dementia and the disease. It is not just memory loss. It is a whole trip along the way,” Youtsey said.

The friend, Sandy, is a resident of Silverado since earlier this year, and Youtsey said, while the transition for all has been a challenge, she knows her friend is getting the right care.

“Silverado has been excellent in helping her stay involved and connected. Their programs and the amount of personal attention she gets is great,” Youtsey said.

The care center aims to keep residents as connected and active as possible, Wylder said.

“We want them to be involved in meaningful opportunities in our (Silverado) community and the greater community,” she said.

One of those opportunities was a recent partnership with a Naperville food pantry, Loaves and Fishes. Silverado residents decorated birthday bags for children from families served by the pantry.

Residents decorated the bags and delivered them to the pantry where volunteers filled them with cake mix, frosting and all the decorations fit for a child’s birthday party.

“(The residents) were so touched to be a part of this,” said Jody Bender, director of community engagement. “We told them that thanks to you a child’s day will be made special.”

The Silverado residents also got a tour of the pantry at 1871 High Grove Lane. The experience made an immediate impact on the residents, Wylder said.

“One of our residents said, ‘I have a disease but I am not going hungry.’ That was wonderful,’” she said.

The experience moved the staff at Loaves and Fishes so much that Bender said the organization would like to plan similar projects with Silverado residents every few months.

“It can be so important to someone if they can feel ‘I can make a difference in someone’s day.’ It is heartwarming,” Bender said.

Beyond the emotional connection, such experiences can benefit those with dementia and the population at large in breaking down misconceptions about the disease.

“The more we can get out in the greater community, the more we can show how those with dementia can be part of things, to remove the stigma,” Wylder said. “We need to take a hard look at how we view those with decreased cognitive capacity.”

The Youtsey family makes regular visits to see Sandy — Youtsey’s husband visits almost every day — and takes advantage of good weather to get out into nature for a few hours each week. The Morton Arboretum in Lisle is one of their favorite locations.

“(Sandy) absolutely loves to go there. I think it’s the peacefulness of the trees,” Youtsey said.

In addition to nature, dementia patients can often connect more with children and teens as they may find themselves thinking back more at their own youth.

While they might not be able to recall what they had for breakfast that morning, they can almost relive childhood experiences.

Silverado sees opportunities there to partner with local schools for students and residents to bond, Wylder said.

While those with dementia can go back to long-ago memories, they are usually more rooted in the present and their immediate needs and thoughts.

They will struggle to figure out their own personal timelines or remember loved ones, but they can teach us valuable lessons.

“In our overly multi-tasking world, what a gift they have to just be in the moment, to really being connected to where they are now,” Wylder said. “Enjoy the day.”

The simplest experiences mean something to dementia patients.

“We can just share some ice cream with them, and at least for that moment, they are happy,” Youtsey said.

“They might not remember tomorrow or even later that night we did that, but at least right then they are happy.”

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