Caregiving can be one of the toughest roles a person takes on, no matter the illness. But caring for someone with dementia carries its own kind of difficulty, since the disease’s symptoms and progression vary widely and no two journeys look the same.
There’s always an element of the unexpected in caregiving, but with dementia, the unexpected is more often the rule. Even those who have cared for others through a disease can find themselves starting from scratch.
“It’s very clear-cut sometimes with other conditions that this is the issue, this is what’s happening in your body, these are your options,” said Jessica Kopecky-Lanausse, Community Resources Supervisor at New Bedford-based Coastline Elderly Services which recently began offering a new dementia-focused program.
But with dementia, “every single person is unique in their journey,” she said.
That’s why Kopecky-Lanausse is excited to talk about GUIDE, a recent Coastline program to support people with dementia and their caregivers to improve the quality of life for everyone involved.
GUIDE, an acronym for Guiding an Improved Dementia Experience, is a nationwide model that was developed and launched by the Centers for Medicare and Medicaid Services two years ago. The model is set to run for eight years.
Coastline began offering GUIDE this summer working with AgeSpan, a Lawrence-based aging services access point.
“To have a program that is dedicated to dementia, in my opinion, is huge, because there is a wide spectrum of dementia diagnoses — Alzheimer’s is one of those — and every different version has different things related to it,” Kopecky-Lanausse said. “It’s such an overwhelming diagnosis to receive. There’s that unknown of, what’s this going to look like? Because you see so many different variables, from the neighbor you had, to a family member, to your best friend’s person who dealt with it.”
That complexity and uncertainty is what GUIDE is meant to address through ongoing support and training for caregivers, along with an annual funding award for respite time when needed.
What’s provided is built around three core areas:
• A monthly connection with a care navigator. Caregivers are paired with a dedicated navigator who checks in with them monthly, helping them make sense of a diagnosis that can look different every step of the way and connecting people to resources as needs change;
• Respite time. GUIDE builds in dedicated time off for caregivers, recognizing that stepping away, even briefly, is part of being able to sustain the role long-term; and,
• Caregiving training. Participants get access to training designed specifically around dementia care, so they’re not left guessing how to handle symptoms or behaviors as they arise.
Kopecky-Lanausse is happy to bring the program to the New Bedford area as part of Coastline’s aging services. The need here is great, she said.
“This program will not only be able to give a caregiver a break but give them the case management piece which I think is most important. And that is a monthly support, like getting a phone call, getting to talk to someone who is educated on dementia, who’s educated on resources, and who understands that you’re on a special journey with your loved one,” she said. “There’s not one person, whether you’re 19 and you might have a parent who’s got early dementia (and doesn’t) know what to do, to that person who’s 65 and their parent just got (a diagnosis). There’s such a spectrum of it.”
In addition to their care navigator, Kopecky-Lanausse said, there is a support line available 24 hours a day, seven days a week. Coastline also helps connect people to additional community resources when needed.
People caring for someone with dementia or similar symptoms are encouraged to reach out for help. An official diagnosis of dementia isn’t needed to connect with the Coastline program, Kopecky-Lanausse said. People can still receive support in a process that may lead to a diagnosis.
Those who may not see themselves as a traditional caregiver — perhaps they’re a friend or neighbor — may also receive support. The same is true for those who have dementia and may not have a caregiver of their own.
To learn more about how GUIDE might help you, email GUIDE@coastlinenb.org or call 508-999-6400.
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