UVM Medical Center Launches Dementia Family Caregivers Center

Burlington, Vt. – For nearly two decades, Lori McKenna, MSW, a licensed clinical social worker and the clinician lead and manager of UVM Medical Center’s newly-formed Dementia Family Caregiver Center (DFCC), has been working to tackle a persistent problem: at-home caregivers of dementia patients often struggle to find the support and resources needed to care and advocate for their loved ones and themselves.

In a rural state like Vermont, where the majority of diagnosed dementia patients receive care at home, the Center is a critical connection for caregivers. Organizers also hope their work helps to reduce the number of dementia patients who end up as long-stay patients in acute care hospital settings.

“There are many valuable resources in the state, but there are also tremendous barriers,” said McKenna of the services and resources currently available in Vermont. “Family caregivers already face so many challenges, so they may become discouraged and lose hope – and that starts a process that can really lead to the decline of the caregiver’s well-being.”

McKenna, Joan Marsh-Reed and Jeanne Hutchins have spent years collecting best practices and participating in international research aimed at improving support for dementia caregivers. Over that time, they’ve implemented evidence-based programs – including the VT CARERS (Coaching, Advocacy, Respite, Education, Relationship and Simulation) Program originally developed by clinicians at Mt. Sinai Hospital’s Reitman Centre in Toronto.

In late 2023, to increase support for families caring at-home for individuals with dementia, the DFCC was established.

“Vermonters caring for a loved one with dementia provided 28 million hours of unpaid care in 2022,” said Megan Polyte, policy director of the Alzheimer’s Association, Vermont Chapter. “For them to fulfill the role of caregiver and maintain their own health they need support. The UVM Medical Center Dementia Family Caregiver Center plays a vital part in building their caregiving skills, helping them prepare for the increased cognitive decline of their family members, supporting their emotional wellbeing, and connecting them to mentors and community resources.”

“We’re not re-creating resource that are already out there,” said McKenna. “Our primary intention is to help people remove barriers.”

Reimagining Family Caregiver Support through Peer-to-Peer Mentoring

The DFCC’s collaborative approach to providing evidence-based caregiver support and resources infuses its Peer-to-Peer Mentoring Program, developed by the DFCC team in partnership with Allegra Miller of Burlington, a retired educator and principal who for years served as a family caregiver to her husband, Bob Rinkema – a technology consultant and business owner diagnosed with Parkinson’s disease and Lewy body dementia.

An enduring memory for Miller is playing the piano with her husband -- something she noticed seemed to cut through his cognitive fog and confusion as his condition progressed.

“I can’t tell you how much pleasure we had doing that, as his was nearing the end of his life,” said Miller. “It was a way to connect at a time when we couldn’t use our usual ways to communicate.”

The recollection, for Miller, is a font of bittersweet memories that chronicle the emotional, mental and physical toll dementia ruthlessly enacts on patients and their loved ones – as well as the moments of triumph, joy and heartwarming absurdity that often sustain family caregivers through an experience many describe as incredibly meaningful and deeply isolating.

The program is a free resource available to family caregivers and its focus is strengthening relationships among caregivers and helping those new to caregiving develop meaningful relationships with experienced caregivers. The program matches experienced caregivers, or mentors, with those who are new to the role – providing them support and guidance from someone who understands from experience the challenges many caregivers face.

Miller said she was motivated to help develop the program and serve as a mentor because of her own experience wrestling with what it means to be an at-home caregiver.

“I didn’t realize what I was doing was caregiving. It was just problem-solving and getting on – because your role is ever-changing,” she said. “Realizing, ‘Oh, I am a caregiver’ – that was the biggest thing for me. It validated what I was going through and helped me work through my grief and share the knowledge that I had.”

The program, which conducted its initial pilot last year, is slated to begin its second round of mentoring in April.

Expanding Pathways for Caregivers

In addition to its work connecting family caregivers with existing resources, the Center also offers programs tailored to caregivers’ needs. The VT CARERS Program; and TEACH (Training, Education and Assistance for Caregiving at Home) – provide evidence-based therapeutic groups to help both experienced and new caregivers develop skills to care for their loved ones and maintain their own well-being.

CARERS, a collaboration between UVM Medical Center the Reitman Centre in Toronto, is the only program of its kind in the United States – using simulated patients to create authentic caregiving experiences, foster camaraderie and reduce social isolation among caregivers

"Many people don’t realize that there are others out there experiencing the same thing,” said Joan Marsh-Reed, MA, a psychologist at the DFCC. “People just have this realization that they are not alone, and it gives them so much more. Sometimes it feels almost like a miracle to see it happen. We’ve had people tell us that it has saved their lives.”

Responding to Rising Demand based and Shifting Demographics

In addition to its caregiver support-focused programs, the Center is also piloting a program to address the shortage of workers whose focus is providing support and resources for at-home caregivers of individuals with dementia.

“Our aging population is growing,” said McKenna. “There are just not enough workers to make support and resources programs efficient.”

The Center aims to provide comprehensive consultations and offer programs to educate, build skills, and support families caring for individuals with dementia.

For more information about the DFCC and its programs, visit UVM Medical Center’s Support Groups website, or contact Lori McKenna at 802-847-4589.