Out of the Darkness
When Carolyn Mutcherson’s mother was diagnosed with Alzheimer’s disease, her family decided to care for her at home, even though they all worked full-time. It was a team effort, with family members alternating taking time off from work to give others a break.
“No one can care for someone, no matter what the illness is, alone,” Mutcherson told the audience gathered at a recent legislative breakfast of the Massachusetts/New Hampshire Chapter of the Alzheimer’s Assoc. “My sisters and I, along with our children, grandchildren, and spouses, helped care for my mother around the clock because she was home and my father wanted her to be home. She was our mother, but his wife. So whatever he asked us to do, we did.”
Mutcherson’s mom died at age 81, in her family’s care, but that care was often difficult, she recalled. She reached out to the Alzheimer’s Assoc. and to Baystate Health, where she worked, for help, but said too many family caregivers don’t know where to turn.
“We were fortunate to have a close-knit family, and as time went on, we found more resources in the community,” she said. “It’s very difficult caring for someone 24 hours a day when you don’t have resources or don’t know where the resources are.”
It’s a story playing out increasingly often in Massachusetts and across the U.S., as the senior population swells — around 10,000 Baby Boomers hit age 65 every day — and, with it, the number of Americans with Alzheimer’s and other dementias. In Massachusetts alone, about 130,000 residents age 65 and up have Alzheimer’s today, and that figure is expected to soar to 150,000 by 2025, a 15.4% increase.
It’s why advocates for a piece of legislation known as the Massachusetts Alzheimer’s and Dementia Act — unanimously approved by the state House of Representatives in January and now in the Senate Ways and Means Committee — are acting with a sense of urgency, said Daniel Zotos, director of Public Policy & Advocacy for the local Alzheimer’s Assoc. chapter.
“It’s always important to pay attention to these facts and figures and see where these numbers are going,” he told the local legislators, caregivers, and others at the April 27 breakfast. “We’ve been very active on the federal level and working with our members of Congress on Alzheimer’s disease research funding.”
On the federal level, Alzheimer’s research received a $414 million boost this year, bringing the total outlay to $1.8 billion — roughly quadruple what spending was in 2011, just seven years ago.
“Knowing we’re doing this advocacy work on the federal level is so important, but we’re also focused on people living with this disease now and families impacted by dementia, and that’s where I really see the state-level work — on the front lines of what is really a health crisis,” Zotos said.
The seeds of the bill known as H.4116 were sown at an event on Beacon Hill in October, featuring expert panels talking about Alzheimer’s disease from different perspectives — such as industry, research, and the care community — and that conversation went on for about five hours between two joint committees, he explained.
“The result of that conversation was a comprehensive bill that packaged together a lot of existing bills within the Alzheimer’s Association legislative platform, as well as other initiatives,” Zotos said — and the legislation has only picked up momentum since.
What’s in the Bill?
The Massachusetts Alzheimer’s and Dementia Act features four main components. First, it creates an integrated state plan within the Executive Office of Elder Affairs, and establishes a permanent advisory council to coordinate government efforts and ensure that appropriate resources are maximized and leveraged.
The second part deals with education and training, specifically requiring medical providers, including primary-care doctors, nurses, and physician assistants, to earn continuing-education credits in Alzheimer’s and dementia as a condition of license renewal.
The rationale, Zotos noted, is that an estimated 45% of individuals with Alzheimer’s are actually diagnosed, and far fewer are offered information and options. Patients with cognitive impairments going into variety of healthcare settings, he argued, need to be diagnosed and treated correctly.
State Rep. John Scibak, who serves the 2nd Hampshire District and has been heavily involved in Alzheimer’s issues, told breakfast attendees that this is a particularly critical part of the bill, even though doctors have told him they don’t support the additional mandatory training.
“They say, ‘we’re doctors. We went to medical school. We don’t need to be educated.’ Well, surprise. You now have to. I think it’s absolutely essential.”
The bill’s third element deals with dementia in the acute-care setting, ensuring that hospitals are better prepared to treat patients with cognitive impairments when they arrive for some other health issue. Statewide, individuals with dementia have a 22.5% readmission rate within a month of visiting the hospital — the sixth-highest rate in the nation.
“You can come at this disease from the heart, the impact there, but also the head when you think about the cost to the state,” Zotos said. “We can work to improve the experience in that setting. We’ve been having some really good conversations with hospitals about this.”
Finally, the bill establishes new protections from abuse and exploitation, including provider training with social workers from Elder Protective Services, and proper family notification, consistent with federal and state privacy guidelines, about incidents of abuse in care facilities.
Mutcherson says that element of the bill is not an attack on caregivers, but an acknowledgement that frustration is part of the daily experience. She said there were times she raised her voice inappropriately to her mother, only to be calmed down by family members.
“You do get frustrated, you do get angry; this is why you can’t do it alone,” she said, noting that even doctors sometimes don’t know how to communicate with patients with dementia and become flustered. “So education everywhere needs to take place — not just in hospitals, but in doctor’s offices and dental offices as well.”
Zotos said he characterizes H.4116 as a workforce-training bill more than anything else.
“If we focus on training our doctors and clinicians in recognizing Alzheimer’s and dementia, knowing the signs, it can really lend to improving that rate of diagnosis and getting folks into care-planning services much sooner,” he noted. “It’s a care-planning issue, it’s a financial-planning issue, and it’s also just a dignity issue to know you have a disease when you have it.”
One Step at a Time
Zotos said the bill, if passed, would be one development — albeit a significant one — in a long string of actions to improve quality of life for those with Alzheimer’s and other dementias in Massachusetts.
Those include legislation in 2012 mandating mininum dementia care standards in skilled-nursing and assisted-living facilities, and the establishment in 2010 of a Silver Alert system to help locate individuals who wander. Most recently, the Alzheimer’s Assoc. secured an additional $100,000 in state funding for Alzheimer’s public awareness.
“We’ve really focused on being in the community and talking about this issue,” he added. “And this budget item has really helped us focus on underserved populations across the Commonwealth, especially African-Americans and Latinos, who more than two times more likely to develop Alzheimer’s.”
Zotos noted that his grandmother had Alzheimer’s disease, and when he saw the impact of the advocacy movement, it encouraged him to get involved as well, leading to his current role. “We’ve had a lot of success in Massachusetts with Alzheimer’s and dementia, improving quality of care within in the care setting.”
Grace Barone, who chairs the association’s advocacy committee and works as director of community relations at Keystone Commons in Ludlow (see story on page 11), said she’s sometimes overwhelmed by the stories she encounters.
“I can’t walk away from this disease. It’s not me today, but it could be tomorrow. It could be any of us in this room. We need to share these stories; we need to be a voice for those who cannot speak any longer and share their experiences.”
Part of that message is educating those who deal directly with individuals with dementia, Zotos, and that’s the promise the legislation holds. He admitted it doesn’t include dramatic benefits like tax credits or respite grants for caregivers, but he’s determined to put families at the table with decision makers to improve quality of life.
“There’s a lot of good happening, but we have never seen a bill on a state level approach Alzheimer’s disease and dementia like this,” he said. “Massachusetts has really been known for healthcare, and this bill would put Massachusetts on the map in terms of helping families and reducing cost — but also helping our neighboring states get moving with legislation like this.
“This bill isn’t perfect; no bill is,” he concluded. “But the conversation continues; the fight continues. It’s a big step.”
Joseph Bednar can be reached at firstname.lastname@example.org