Day: May 29, 2018

Out of the Darkness

Daniel Zotos characterizes H.4116 as a workforce-training bill more than anything else.

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.

Carolyn Mutcherson says caregivers often get frustrated and overwhelmed, and need to know where they can access resources and help.

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 [email protected]

Mindful Connections

Allison Baker (right, with Cheryl Moran) says everything from the Atrium’s programs to its physical layout caters to individuals with cognitive impairment.

Over the past few decades, assisted-living facilities have increasingly opened dedicated memory-care units, and for good reason — a booming senior population is set to spawn sharp increases in Alzheimer’s disease and other dementias. These facilities stress safety, but more than that, they aim to keep residents active and engaged with life, while giving their loved ones much-needed peace of mind.

The guilt often associated with ‘putting mom in a home’ has never really gone away, even when the move makes sense, and those ‘homes’ — especially those which focus on memory care — aren’t what they used to be.

“It seems like a last resort sometimes,” said Allison Baker, director of Community Relations at the Atrium at Cardinal Drive in Agawam. “But what we’re able to provide in this community is care that is centered around their cognitive needs.”

Atrium — one of 56 communities in the Benchmark chain, which focuses solely on memory care — is celebrating its 20th anniversary this year, which allows its leaders to take a long view of how residential memory care has evolved.

“We care for individuals who have some form of cognitive impairment,” Baker explained. “Some of our residents are milder in terms of cognitive impairment, while some have end-stage, advanced dementia. We care for residents through the entire spectrum.”

It’s no secret that, as the senior population in America swells, so have instances of dementia. Alzheimer’s disease alone affects more than 5 million Americans — and, barring a cure, that figure might soar to 16 million by 2050, according to the Alzheimer’s Assoc.

That puts residences that specialize in memory care in a sort of sweet spot when it comes to meeting a growing need. In fact, that goes for assisted living of all kinds.

“The reality is, we’re all going to need help in the future,” Baker said. “It’s not something everyone wants to think about, but it’s reality. We try to educate families and provide them with guidance, whether or not someone moves into our community. Healthcare is not easy to navigate, but when families do come in, they see we’re not an institutional setting, but a homelike environment — yet, we can still meet their care needs.”

While giving BusinessWest a tour of Armbrook Village in Westfield, Executive Director Beth Cardillo noted the small size of the rooms in its Compass memory-care neighborhood, but there’s a reason for that — smaller spaces are easier to psychologically navigate, and residents spend most of their time outside the room anyway.

“Memory care is a smaller life in terms of space, but what we do there is no different than what we do in the rest of the building,” she said.

There are a few main reasons why families choose memory care, she noted. The first is that their loved one may be a flight risk, and families are worried their they might wander out of a building at 3 a.m. if the unit isn’t secured. “So, safety is obviously the number-one concern,” Cardillo said.

“The other piece, what people often don’t realize, is that, as someone’s world gets smaller, what we provide is a safe but very caring, normalizing environment. It’s a smaller world that’s a safer world. Often, people move to traditional assisted living and realize the world at large in this building is too big for them; they can’t negotiate the space. Sometimes less is more.”

Loved ones come to realize this too, she added. “When people move into memory care, for a lot of reasons, their families breathe a big sigh of relief, and it feels like a burden has been released off their shoulders. I always hear, ‘why didn’t I listen to you? It took me a while to get on the same page with this, but you were so right.’”

Kelly Sostre, executive director of Keystone Commons in Ludlow, which also boasts a dedicated memory-care neighborhood known as the Cottage, agreed that it can be difficult for families to come to terms with a growing need for help.

“It’s a hard hurdle for a child to get over, knowing her mom needs to be in memory care,” she told BusinessWest. “I definitely have to hold their hand through that process and explain the benefits of being in memory care.”

However, she went on, “just a week or two after they’re here, they’re like, ‘this is the best thing ever.’ They don’t have to worry anymore — they can come in and have a quality visit with mom, not worrying about medications or bathing her. They’re engaged, not tired, because they’re sleeping at night.”

Active Lives

Baker said the layout of Atrium is purposeful, catering to individuals with cognitive impairment.

“We don’t have long hallways with a lot of rooms coming off them, which can be confusing for residents,” she explained. “Instead, there are two wings with different neighborhoods in each wing, where apartments open into a common area.”

Beth Cardillo says families often find it difficult to choose memory care for their loved ones, but are typically relieved once they do.

Meanwhile, each apartment is decorated with a shadowbox out front, which families can decorate however they wish, telling a story about their lives and interests and reaffirming the idea that the residents are individuals. But, as Cardillo said, the idea is to get residents out of those rooms.

“In our model of memory care, we don’t want residents sitting in their room alone,” Baker explained. “Part of the reason someone moves into a community like this is that engagement. Someone with cognitive impairment may not feel comfortable around those without cognitive impairment, but here, in a comforting space, they feel free to express themselves — we’ve seen that time and time again.”

Executive Director Cheryl Moran noted that, whenever a resident is admitted, the family is interviewed to learn about their interests, past hobbies, favorite foods, and more.

“That way, we can program our care and activities to what they enjoy,” Baker noted. “Some residents may enjoy playing bingo, while others may prefer trivia or want to join a garden club or a baking club. There are always multiple programs going on, so residents have the ability to decide whether to actively participate or just socialize and observe.”

The emphasis on personalizing the experience stems from an acknowledgement that these are people with long histories who led rich lives, and want to continue living. “Some were homemakers, some were doctors, some were journalists. It runs the gamut, so it’s about finding what each resident enjoys doing so they can have the highest quality of life they deserve.”

With residents ranging in age from 60 to 97, Baker noted — with birth years spanning almost four decades — even what music residents enjoy varies wildly, with tastes ranging from the 1920s to the 1970s.

“It’s about finding what each resident enjoys and appreciates,” Baker said. “And we count on families and caregivers to provide a lot of that information — and, to some degree, our residents. We want them to feel as they have control, making their own decisions on things and letting us know what programs they like and don’t like.”

With a packed daily calendar of activities like word games, reminiscing, Zumba, tai chi, yoga, art, and music, Sostre said, Keystone also tries to offer something for everyone. Shuttle trips into the community are especially popular, and they’re also a chance to educate establishments like restaurants — which are contacted in advance — on how to accommodate people with memory loss.

Back on campus, many Keystone activities are enjoyed by an integrated group, with residents from independent, assisted, and memory-care neighborhoods gathering together for exercise programs or a chef’s club in which they prepare and enjoy a meal together.

“The road to Alzheimer’s is different for each individual here, and we try to program for that individual. Sometimes their needs might be different than the general group,” said Grace Barone, director of Community Relations, adding, however, that Keystone tries to strike a balance between meeting individual needs and encouraging group interaction.

Good Nights

Many times, dementia affects sleep patterns, which means some residents keep odd hours, but that’s no problem in a unit that’s staffed 24/7.

“If I walked in here at 1 in the morning, I wouldn’t be surprised to see a resident or two in the common area having coffee with the care manager or doing a puzzle together because their sleeping patterns do get mixed up,” Sostre said. “But we have staff here, so if that happens, it’s OK.”

Kelly Sostre, left, and Grace Barone say many of Keystone’s activities integrate its independent-living, assisted-living, and memory-care residents.

Cardillo agreed. “If you want to be up at 3 in the morning and have a cup of tea and toast, that’s fine. Want to dance in the living room at 4 in the morning? That’s fine, too. I don’t want to say anything goes, but the reason they’re here is not only to keep them safe, but to give them a robust life, not just keep them alive.”

Reminiscing is a big part of the activity program, she said, especially with a program called Reconnections, which is simultaneously a chance to learn new things and to generate conversation about the past.

“They remember going to USO dances or getting married the week before shipping out to war, or the Andrews Sisters singing ‘Boogie Woogie Bugle Boy.’ They’ll talk about art or where they went on their honeymoon. It brings up so much conversation.”

Such reminiscing has a clinical benefit, she added. “It keeps the synapses going — it’s a spark that increases dopamine in the brain. To see them sit and have discussions, it’s beautiful to watch.”

Music is a critical element as well — “it’s a window to the soul; it can bring you to your high-school prom or anyplace, really” — not to mention sensory activities from dancing and yoga to gardening. “It’s the regular world in a smaller place.”

And it’s often a place that remains meaningful to the family long after their loved one is no longer there, Moran said.

“The wife of a gentleman who passed came back to visit me maybe a month ago. She said she has a connection here and she likes to come visit, and she’s thinking about volunteering in our programs, which is very touching,” she told BusinessWest.

“It’s about love — when you walk in, I hope you feel a real sense of connection and family.”

Joseph Bednar can be reached at [email protected]