A groundbreaking partnership becomes a national model.
When Joyce Amorim began to notice that her friend Martha was repeating herself, she knew something was wrong.
Within two years, Martha was diagnosed with vascular dementia, the second leading cause of dementia. Amorim became her caregiver, helping her pay the bills and organize mail, supporting her friend as best she could.
“I had not dealt with this before. It was all brand new to me,” Amorim said. It was on a visit to Martha’s primary care doctor that she got access to a vital source of help.
“He put me in touch with a social worker, who put me in touch with Megan,” she said.
Amorim would soon discover how important Megan Stolze would be in helping her as she cared for her friend. Stolze is a dementia care consultant for Tufts Health Plan.
A landmark collaboration
Recognizing the growing impact that Alzheimer’s disease has on members and their families, Tufts Health Plan created an innovative program in collaboration with the Alzheimer’s Association, immersing their own dementia care consultants in the local Association’s offices, close to expert resources.
When a member gets a diagnosis of Alzheimer’s or dementia, a Tufts Health Plan dementia care consultant reaches out to the member or family to conduct an initial assessment, and then creates an integrated plan of care that is discussed and shared with the member’s primary care physician.
The program features ongoing collaboration with Tufts Health Plan care managers and support from an expert like Megan Stolze. It also puts families into direct contact with the Alzheimer’s Association’s highly regarded programs, from caregiver education to support groups and a 24/7 help line.
Said Stolze, “We do a ton of coaching with caregivers on communication tips and behavioral management. We’re also able to provide that basic level of education of ‘What is dementia?’”
Stolze helps caregivers talk about driving, finances, or protective services. She alerts them to red flags, and helps break down the stigma of having those discussions.
“These are scary topics to talk with your loved one about,” she said. “Sometimes people just need a little extra hand on how to have that conversation.”
For Joyce Amorim, Stolze answered questions, offered advice, and gave her tips on things that “never dawned on me to do,” Amorim said.
Amorim also attended in-person classes led by Stolze, where she could hear other caregivers voice their experiences and how they cope.
This was a lifeline to Amorim, whose relationship with her friend began to change because of the disease. She began to witness frustration that “I knew wasn’t her,” she said.
“It’s hard, you have emotions as a caregiver,” Stolze said. “We help them take a step back and look at things maybe a little more concretely. We are being realistic about a loved one’s condition at any given point in time, from the unbiased standpoint of what’s best for the loved one.”
“Megan was a tremendous help in saving myself and my friend anxiety,” Amorim said. “I was just so grateful to have this resource. It helped both of us.”
A relationship for good
“Tufts Health Plan became the first significant partner in what’s now called Dementia Care Coordination,” said Jim Wessler, CEO of the Alzheimer’s Association, Massachusetts/New Hampshire Chapter.
Roughly 5.7 million people have been diagnosed with Alzheimer’s in the United States, yet caregivers and families are not generally directed anywhere, he said. “Even the step of calling and asking for help is hard.”
Tufts Health Plan’s program is unique in that it makes the initial proactive call to the member or family. “That proactive call is a big deal,” Wessler said. “It short-circuits by years the time that it takes for families to get support.”
From care coordinators to information, support groups, and the 24/7 help line, “we really envelop those families in a whole array of support,” he said.
The program itself has been influential in the state and beyond. The Alzheimer’s Association now has 14 total partners in Massachusetts with Dementia Care Coordination, with the program expanding throughout New England, Wessler said. “Our national office is seeing this as a model. Different parts of the country are implementing versions of this.”
“Tufts Health Plan has really been a leader; they’ve been very outspoken about it, and as a company, they are all in,” he said. “We think the work they do supporting families living with dementia is outstanding.”
Tufts Health Plan will soon be launching a training program for its Member Services teams – who are on the front line of speaking with members - to help them identify the signs of dementia or confusion, and how to interact with that caller.
“For some members, the reason someone’s not paying their bill,” Wessler said, “is not because they’re trying to avoid payment,” but because they are in the early stages of dementia. With this training, staff will be better prepared to make sure Tufts Health Plan members get the assistance they need.
The training program is one part “of making the company even more attuned” to these signs, Wessler said, and just one of the many ways the collaboration manifests.
For some, support from a Tufts Health Plan dementia care consultant is a one-time phone call. For others, like Joyce Amorim, calls, emails, and the occasional visit, when necessary, can last for several weeks or as long as the member needs. Importantly, all services provided are at no cost to the family.
“We’re really there for a helping hand,” Stolze said, for caregivers and families. “We’re not there to add to the stress of their already very hectic lives; we’re there to help guide them.”