• Luke Awtry
• Doug Cardin (left) and Fred Silbernagel

The first few years after the Alzheimer's diagnosis weren't all bad, as the knowledge of the inevitable inspired Doug Cardin and Fred Silbernagel to go places and do things they never would have done otherwise. But as his husband's condition deteriorated, Cardin, thrust suddenly into the role of constant caregiver, found it increasingly difficult to cope.

The Burlington resident lost touch with people he'd known for decades, including some who seemed to vanish without warning. Running errands became a logistical nightmare. He started having panic attacks and insomnia.

"There was a time that I wasn't sure I was gonna get through this alive," he said.

Last fall, at the urging of a counselor, Cardin enrolled in a therapy program sponsored by the University of Vermont Medical Center for caregivers of people with dementia. He learned how to better engage with Silbernagel, who once had been the CFO of the Brookings Institution, a Washington, D.C., think tank, but now couldn't read the newspaper. The therapy reminded Cardin that his own health is just as important as his husband's.

"If I'm in a better mood, I can do a better job for him," Cardin said, nodding across the living room toward his spouse. "Fred's happy, I'm in a better mood, right?" Cardin added.

"Oh, yeah," replied his husband, who was otherwise silent when Seven Days visited.

Some 30,000 people in Vermont provide care to a family member who has Alzheimer's or another form of dementia, according to the Vermont Department of Health. Each week many spend 40 hours or more in the role — making their meals, helping them shower, preventing them from falling or wandering off. The burden exacts a heavy toll, research shows, putting these caregivers at increased risk of anxiety, depression and chronic health conditions.

The UVM center seeks to reduce those outcomes by offering peer mentorship, counseling and group therapy for both new and seasoned caregivers.

Known as the Dementia Family Caregiver Center, it's the brainchild of Lori McKenna, a licensed clinical social worker who said years of working with dementia patients at the hospital taught her that the profound impact on families is often overlooked. Complex feelings of grief, hopelessness and even anger often compound stress brought on by the unwelcome diagnosis. Financial challenges make it worse.

"Sometimes, people don't have great relationships with the person they're caring for and they don't want to be caregivers," McKenna said, "but there are no other options.

By next year, the state projects that some 17,000 Vermonters will be living with dementia. The vast majority will reside at home, where family members will look after them. This informal network of caregivers provides about 36 million hours of unpaid care annually, valued at more than $700 million, according to a recent state report.

Many caregivers are spouses who must contend with the role's physical demands and also the emotional weight of watching the person they fell in love with undergo difficult cognitive changes.

"You're alone, you're exhausted, and you don't know what's happening," said Cardin, who met his husband at a bar more than three decades ago. "But the end is not good. You know that."

Despite their importance, many caregivers feel unsupported by both the health care system and their own families. Help, whether respite care or financial assistance, can be hard to find, and many caregivers end up socially isolated. "They start to feel like they're the only ones who've ever had this experience," McKenna said.

The new dementia center seeks to connect caregivers with a wide range of resources, including legal assistance and respite care. It also offers support groups led by trained professionals who can help caregivers better understand how to take care of dementia patients — and themselves. The sessions, which last either four or eight weeks, are typically covered by private insurance, and most are held virtually, allowing people to participate from across the state.

One big area of focus is communication, as dementia erodes not only memory but also the ability to understand and find words. Participants learn strategies for having productive conversations with their family members. "It may be as simple as someone learning, 'Well, I need to speak softer' or 'I need to speak slower and use less words,'" said Joan Marsh-Reed, a psychologist working with the center.

In addition to learning practical skills, participants are encouraged to reflect on their caregiving experiences, a therapeutic process that can lead to emotional breakthroughs, McKenna said. "A light bulb flicks on" whenever someone realizes they're not alone, she said, especially when sharing feelings they might be ashamed to have.

"Some people want this to be over," McKenna said. "They don't want to be caregivers any longer, and to be able to have the freedom to say that out loud, and to not be judged, is amazing."

The UVM center also offers a mentorship program that connects new caregivers with experienced ones. Six people completed a pilot last year, and another group will be matched this April. McKenna hopes to help other agencies replicate the program around the state, because the hospital already has a long wait list.

The center's launch has been welcome news to Meg Polyte, public policy director of the Alzheimer's Association of Vermont, who said her organization hears daily from exhausted caregivers. Over time, Polyte said, she hopes doctors will refer families to the center immediately after a diagnosis, since the sometimes slow-moving nature of the disease can lead families to put off care planning.

"What's really unique about dementia caregiving is: It's completely manageable — until it isn't," she said. "You can't really wrap your head around how this is progressive, and how long it goes on, and how it wears on you."

For Cardin, the Burlington caregiver, one of the program's more helpful exercises was to write down a list of people he could call on for help. Looking over the seven names, Cardin said, allowed him to take his first deep breath in a while.

Another takeaway: "If there's something I really need to do, or want to do, there's a way to do it," he said.

Perhaps it's no coincidence, then, that Cardin has come up with a new goal: getting back into his once beloved hobby of making radio-controlled sailboats. After a yearslong hiatus, he recently dusted off his workbench. He hopes to start a new project soon.