THE VILLAGES, Fla. – An estimated 44 million Americans age 18 and older provide unpaid assistance and support to older people and adults with disabilities.
For families dealing with Alzheimer’s and dementia, care becomes a 24-hour priority, and it can be isolating.
In fact, research shows that family members who provide care to individuals with chronic or disabling conditions are themselves at risk.
Emotional, mental, and physical health problems arise from complex caregiving situations.
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Higher levels of stress, anxiety, depression and other mental health effects are common among family members who care for an older relative or friend.
While there are respite programs and support groups for caregivers, few activities include caregivers and those they care for as a couple.
Joan Bender and Dick Boyden of The Villages are trying to change that with a project they call Our Moment Café.
“Our consideration and our thoughts about the mental health and well-being of our participants is paramount,” Boyden said. “And what happens is that when a diagnosis is made the social fabric of your friends begins to pull away. This increases the isolation.”
Bender and Boyden welcomed guests at the Chula Vista Recreation Center as music and laughter fill the hall. The two have invited about a dozen couples to watch a musical performance and enjoy snacks and conversation.
“The people who come to the café find that they now have a community, a fabric, all its own,” Boyden said.
This month’s theme is Mardi Gras. Volunteers hand out beads and ornamental masks to add to the festive atmosphere.
It’s a simple outing but one that would normally include stress and confusion for many of the people here today.
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“What we see is that the mental health between the caregiver and the one being cared for is two sides of the same coin,” Boyden said. “The focus is on the caregiver. They have to have the stamina they have to have the wherewithal to go on that journey that they are on.”
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 wildfire. We could have never imagined.”
“I think the mental health is giving people a sense of order out of the chaos they may be experiencing,” Boyden said.
Ron and Anne LaChance sat at a table talking with friends. The couple has been married for 62 years. Ron developed dementia about six years ago, and they’ve been attending the café sessions for about two years.
“It’s a wonderful program,” Anne LaChance said. “It gives me special time with my husband to do something together. Not that we can’t do things at home, but this is entertainment, it’s social, it’s relaxing. We look forward to our monthly visit.”
Anne LaChance said being with people who understand the unique challenges of being a dementia caregiver provides her with some mental health relief.
She said that in becoming a caregiver for someone with dementia, you have to give up some of your freedom and even privacy. There’s an added pressure to keep your composure.
“You have to stay in the right frame of mind so your loved one can stay in the right frame of mind,” Lachance said. “You have to find something that you can do that will take you out of the moment and bring you to a place where you can take a deep breath.”
For the LaChances, that could be watching old movies or a visit to Our Moment Café.
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%, you have to be thinking of that other person,” Bender said.
Boyden and Bender said 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.”
LaChance agrees. “Your mind can leave where it is 16 hours a day, and you can go into a moment where you both can actually fall in love again.”
“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 Café at 352-775-9715 and email firstname.lastname@example.org for more information.
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