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Living with dementia: This couple says shared social experiences are key

Our Moment Cafe offers entertainment and friendship for The Villages couples

SUMTER COUNTY, Fla. – For families dealing with Alzheimer’s and dementia, care becomes a 24-hour priority and it can be isolating.

While there are respite programs and support groups for caregivers, few activities include caregivers and those they care for as a couple.

This week’s News 6 Getting Results Award winners are trying to change that with a project they call Our Moment Cafe.

Joan Bender and Dick Boyden of the Villages welcomed guests at the Bacall Recreation Center as music and laughter fill the hall. The two have invited a dozen couples to watch a musical performance and enjoy snacks and conversation. It’s a simple outing but one that would normally include stress and confusion for many of the people here today.

Everyone here shares a similar story, they or someone they love is suffering from the early stages of Alzheimer’s or dementia.

“What’s going on is people are feeling free and comfortable being with others. There’s no judgment,” Boyden said as he watched the group dance and sing." They’re just saying I can be me."

Boyden and Bender started the monthly meet-ups because they say nothing in the area filled the same need. “There’s nothing like it in the Villages,” Bender said. "So it’s caught on like wild fire. We could have never imagined.

Carolyn and Richard Vena have been married for 55-years. The couple was quick to hit the dance floor and were excited to make new friends.

Richard was diagnosed 11-years ago but remains active. Carolyn Vena said being out in a social setting is important. “It’s validating,” Vena said. “You feel like you’re not in this all by yourself.”

Boyden and Bender are both certified dementia practitioners. They say their training confirms caregivers and those they care for tend to isolate themselves from social interaction as symptoms progress. Gathering with others who are dealing with the same issues provides a certain comfort.

“The caregiving experience changes the relationship because 100 percent you have to be thinking of that other person,” Bender said.

Denise and Jolly Roger Pinkerton were sharing vacation stories with new friends over cheese and cracker snacks. The couple has been married for six years. Jolly Roger was diagnosed two years ago. Denise Pinkerton said hearing how others are coping is helpful for their own situation.

“Under the circumstances with the memory problems we’re going through you probably wouldn’t get out if you didn’t have things like this,” Jolly Roger added.

Boyden and Bender say they hope the activities are a way to preserve relationships.

“When they have this experience together the loved one with dementia is now in the present. They’re no longer in the past,” Bender said. “So it will build a memory that will sustain that relationship through the hard times.”

The couple was nominated for the News 6 Getting Results Award by Elaine Eisenhauer, Community Liaison for Seniors Helping Seniors. “I was blown away by the two of them," Eisenhauer said. “They have so many visions for what we need to be doing. The idea of aging in place, aging safely, building a dementia-friendly community by removing the stigma.”

“I think when you look at the faces of people what brings a smile to your face is that they’re smiling, they’re relaxed,” Boyden said. “The fact that their care partner turns to the person they are caring for and they show a public display of affection just by holding hands.”

Boyden and Bender say they hope to add more groups with time and that hopefully, they will sustain themselves as couples make friends and meet on their own time.

Potential participants and volunteers can reach Our Moment Cafe at 352-775-9715 and email: kjoanbender@gmail.com for more information.


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