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Healthcare Heroes

ServiceNet’s Enrichment Center and Strive Clinic and Its Partners at Springfield College and UMass Amherst

Helping People with Brain Injuries Maintain Function Is a Unique
Group Effort

Leah Martin Photography

Ellen Werner has been helping people with acquired brain injuries for decades.

But since she arrived at ServiceNet a decade ago, she’s learned how powerful collaboration can be in serving this population that often falls through the cracks in today’s healthcare system.

Werner’s work with ABI patients began in Pennsylvania, at one of the first dedicated brain-injury rehabilitation programs in the country, Bryn Mawr Rehab. After moving to Massachusetts, she did homeless outreach through the Statewide Head Injury Program that was created in 1985. “I was trying to find people in shelters that had brain injuries and needed proper medical care and housing.”

When she was approached by the then-vice president of ServiceNet to help launch its Enrichment Center in 2013, she was intrigued; the center helps people with brain injuries to become more functional and engaged with others and their community.

“I had some kind of an understanding of what I wanted to do for these people and what kind of opportunities I wanted to be able to provide them,” said Werner. “But I just didn’t know how we were going to afford therapies. The agency had already put in a lot of money just opening the program, so that’s when I started sending out messages. Springfield College was the first to respond to them.”

Today, the Enrichment Center and ServiceNet’s Strive Clinic in West Springfield — day programs for adults with brain injury caused by trauma or medical conditions — actively collaborate with two area academic institutions to provide outstanding rehabilitative care, while helping train the healthcare professionals of tomorrow.

“I had some kind of an understanding of what I wanted to do for these people and what kind of opportunities I wanted to be able to provide them.”

This work began in 2014 when Werner, director of Operations at the Enrichment Center and Strive Clinic, met with leaders of the Physical Therapy program at Springfield College to develop an innovative model of community-based care that would bring in graduate students, under the direction of their instructors and on-site clinical staff, to work with clients on a variety of PT modalities. The model proved so successful that this partnership expanded in 2017 to involve the Communications Disorders program at UMass Amherst’s School of Public Health & Health Sciences in developing and providing speech-language pathology services at the Enrichment Center.

Since she facilitated those partnerships with Springfield College and UMass Amherst to better serve people with ABIs, the program has grown from a small group of students and instructors to a full-fledged clinical team.

Lisa Sommers, clinical director and clinical associate professor in Communication Disorders at UMass Amherst, said the partnership with the Enrichment Center is a natural offshoot of the clinical training program first-year graduate students have to complete.

Kathy Pappas

Kathy Pappas says the program wouldn’t be where it is today if it weren’t for Ellen Werner.

Kathleen Pappas, associate professor of Physical Therapy at Springfield College, agreed. “It really aligns with the mission of Springfield College to educate our students to become leaders in service.”

 

Specialized Care

The Enrichment Center is an adult day-care center that offers physical, occupational, and speech and language therapies as needed, but clients also have the ability to choose from an array of activities to help promote cognitive growth and social interaction, such as support groups, music and dance sessions, arts and crafts, and trips to museums, bowling alleys, and movie theaters.

The Strive Clinic uses the Enrichment Center’s well-equipped gym, providing a safe space for limited-contact services by appointment only, which allows for more individual work for a client.

Clients at the Enrichment Center and Strive Clinic are typically adults with ABIs, many of whom suffered them years ago. Brain injuries can be inflicted by traumatic, external forces, such as car accidents, assaults, and other forms of violence, or from medical issues, such as strokes, aneurisms, and brain tumors. An ABI can cause changes in identity, mental health, relationships, family structure, the ability to work, and economic status.

Years past the big event that altered their life, people with ABIs sometimes fall off the radar in the healthcare system, but ServiceNet and its partners want to change that. Clients are able to go through the Acquired Brain Injury/Moving Forward Plan (ABI/MFP) waiver program.

“There’s some kind of a beautiful milieu … that is developed between them.”

“With the waiver, there’s really no end to the amount of therapy that we could provide people,” Werner said. “Our clients have really benefited from it; it’s just wonderful. We’ve had people that have been in wheelchairs for years, and now Kathy is getting them up, standing and walking. And we have clients that didn’t have communication devices that really benefit from them and the sessions provided now. There are all sorts of things that we’re able to do that we wouldn’t be able to do if we had just traditional insurance.”

Maintaining the client’s level, or hopefully going beyond it, requires constant, consistent therapy, she noted, so the waiver program allows the center and clinic to be more flexible in accepting and keeping clients. At the same time, the State Licensing Board of Massachusetts requires the facilities to follow all the same regulations any other clinic would follow.

The main focus for both facilities is to help people who are living with a brain injury to become more functional and engaged with others. And because every brain injury is different, students get a more varied education than they might elsewhere.

“By having us, the instructors, available on site, providing the supervision, we know exactly where they are in the curriculum,” Pappas said. “We hold them accountable to applying the knowledge they’ve learned in the classroom and measuring that as they prepare to become entry-level clinicians.”

Because there isn’t any prior conditioning, students are able to adapt to the center and provide the care clients need, she noted. In short, they come in with a learner attitude, so they’re more receptive to the clients and their habits.

Many people have a narrow idea of what therapy is and what it should look like, but the programs provided by the Enrichment Center and Strive Clinic “really explode that,” said Michael Starr, clinical instructor and supervisor in Communication Disorders at UMass Amherst. He went on to explain the relationships this intense care creates in the center.

Lisa Sommers says the Strive Center teaches students how to provide continuous services for a person who is living with an ABI.

Lisa Sommers says the Strive Center teaches students how to provide continuous services for a person who is living with an ABI.

“At the end of a recent spring semester, the student clinician got a beautiful thank-you note written by this client who has a really hard time expressing herself through writing. They had been working on it all semester. So she was able to do that and send it to the clinician, which was amazing and left everyone in tears.”

Sommers said the client and student spend the semester teaching and connecting with one another, and that connection leaves a lasting impact on both of them.

“There’s some kind of a beautiful milieu, like Michael said, that is developed between them,” she added. “I think it teaches them how to provide services across the continuum of a person’s life who is living with a brain injury.”

But while students and faculty are impacted, Starr added, the program can be life-changing for the clients at the Enrichment Center and Strive Clinic.

“The clients really love it so much. Certain clients will park themselves outside of our offices and wait and sometimes demand a session,” he noted. “Or I’ll go to get someone and say, ‘hey, do you have 30 minutes for a session?’ and they really want it, but they say, “I have to go to PT first,” and they’re on their way to PT because they’re not going to miss their appointment for love or money. They’ll come back and see me after. They just really love our services.”

He went on to tell BusinessWest that, because of their injury and especially when living in small group homes, clients can be marginalized or cut off from what’s happening in the world around them. Sommers agreed.

“When people encounter the medical system, there is so much that is determined for the patient, particularly when the patient can’t communicate or has cognitive impairments,” she said. “They don’t get to participate in person-centered care, which we know has the best outcomes, but is not really the model used in our healthcare system. And there are so many barriers for people — just think of all the cognitive challenges that are in our healthcare system. I can’t even navigate my own health insurance half the time and struggle if something isn’t covered or denied.”

Historically, the healthcare system has been “a top-down, patriarchal model,” Sommers added, putting clients in a vulnerable position emotionally, financially, medically, and more. Through the Enrichment Center and Strive Clinic, that model is upended, allowing clients “to have agency, to have a voice, to be able to say what they want and be able to say.”

 

Striving for Tomorrow

In supporting the program’s Healthcare Heroes nomination, Amy Timmins, vice president of Community Relations at ServiceNet, noted that “the partnership between ServiceNet, Springfield College, and the University of Massachusetts exemplifies the vision and innovation so central to the Pioneer Valley — where academic and healthcare programs are each strengthened by the other, for the benefit of those they serve. In working together, they have created an environment where new goals and possibilities are free to take hold every day.”

That they have, which is why Sommers sees potential for other collaborations; in fact, the clinical educators she’s worked with have also articulated as much because of the opportunities collaboration brings to the community.

Their next goal: “world domination,” Werner said with a laugh. Actually, she wants to continue to create more opportunities for people living with ABIs.

“In healthcare, it’s all about collaborating with other professionals, and Ellen has brought that to the top and forefront of what’s best for these clients,” Pappas said. “Without her vision and enthusiasm and ability to really work within and out of the system to make things happen, none of us would be here. So I am eternally grateful to her for what she’s given our students as opportunities and what she’s given to the clients on a daily basis.”

For finding and fostering the connections that not only help people with acquired brain injury, but cultivating the next generation of therapists, ServiceNet’s Enrichment Center and Strive Clinic, and its academic partners, are certainly worthy of being called Healthcare Heroes.

 

Kailey Houle can be reached at [email protected]

Healthcare Heroes

Division Chief, General Medicine and Community Health, Baystate Health

He Convened a Broad, Effective, Street-level Response to a Pandemic

Leah Martin Photography

 

From his years working at a VA hospital in Rhode Island to his more recent community-health role overseeing Baystate Health’s medical practices in Springfield, Dr. Paul Pirraglia has always seen himself as a problem solver.

“It’s gratifying to take care of a patient and get a problem solved, or at least controlled for them — when you can address a concern that is having an impact, not just around a health issue, but in a broader sort of way,” he said. “Take a patient who has diabetes. You can get their diabetes under control, but because food is such a huge part of diabetes, if you can actually get them access to good, nutritious foods, then it’s not just about the diabetes; it’s a life changer in a way.

“As medical professionals, we really want to make a difference in people’s lives,” he went on. “So it’s gratifying to be able to serve when there’s a substantive need.”

COVID-19 would certainly qualify.

Which is why Dr. Andrew Artenstein, Baystate’s chief physician executive, who spearheaded pandemic response throughout the system when COVID arrived early in 2020, asked Pirraglia and Dr. Jackie Spain, co-chief medical officer of Baystate’s BeHealthy ACO, to convene a workgroup to mitigate the impact of coronavirus on the most vulnerable patients in the community, particularly those with significant social needs.

“It was clear that traditionally underserved populations were going to get hit especially hard by this pandemic.”

The workgroup included representatives from Baystate Health and its four community health centers, Caring Health Center, the BeHealthy Partnership (a Medicaid accountable-care organization, or ACO, that includes Health New England as the insurer and Baystate Health and Caring Health Center as care sites), the Public Health Institute of Western Massachusetts, and University of Massachusetts Chan Medical School – Baystate.

The group looked at factors that could contribute to risk, such as low-income housing, where COVID cases were occurring, where ACO members lived, medical conditions were associated with worse COVID outcomes, as well as solutions such as access to pharmacies that home-deliver, food delivery, and transportation.

“On a personal level, I’m drawn to research: here’s a vexing problem; how do we solve it?” Pirraglia said, which is one reason this strategy resonated with him. “When Dr. Artenstein said we needed to do something, it was very, very early on, but it was clear that traditionally underserved populations were going to get hit especially hard by this pandemic. He said, ‘do what you need to do; I’ve got your back.’ So what Jackie and I did was convene a group which was not limited to just Baystate; we got all the leaders we needed.”

That included professionals from a wide range of offices at Baystate and beyond, from infection control to diagnostics and laboratory; from diversity, equity, and inclusion to community relations.

“We were able to pull together a multi-disciplinary group of folks who saw the importance of convening and doing this work,” Pirraglia said. “Despite the jobs they had and their schedules, we met on a weekly basis for many, many months in a row; attendance was phenomenal. That’s because people saw the need to do this.”

This Springfield Housing Authority testing event

This Springfield Housing Authority testing event was organized by the COVID mitigation team.

The goal was to figure out the needs of the Springfield population and communicate with them in a way that was meaningful, and the work progressed rapidly.

Initially, the workgroup explored ways to protect people who were at risk, trying to catch people who had not been infected and keep them from getting infected, while identifying who was infected and making sure those around them had protection. To aid in this effort, a grant from the Community Foundation of Western Massachusetts enabled community health workers (CHWs) to supply materials such as facemasks, portable pulse oximeters to measure blood-oxygen levels, and room dividers and air mattresses so families could quarantine within their own living spaces.

“We really broke into two groups, one group more patient-facing and another group more community-facing, and then continued to meet and engage and make sure there was good crosstalk back and forth between us,” Pirraglia told BusinessWest, while stressing the importance of communication early on.

“The communication was with the community and within all the different groups that were participating in this workgroup. But we were also communicating with our community health workers, the on-the-ground folks, the ones gathering the patient needs and delivering on those needs. And the communication, I have to say, was pretty robust, in large part because people were committed to making this happen.”

The group performed geographic analysis to determine where to focus its efforts, gathering information about patient conditions in various areas so they could inform the CHWs on the ground about which areas were riskiest and who needed help, he explained.

“I can’t emphasize enough how important our community health workers were in this work. We were the coaches, but they were the players; they were the ones on the field making this happen.”

“We had to prioritize what we were doing, so communication was paramount. At our Tuesday meetings every week, we’d say, ‘this is what the maps are showing, this is what we now about pharmacy deliveries, this is what we know about food deliveries, this is what we know about the ability to reach out to people.’ We needed to make sure all the different arms knew what the others were doing so we were able to work in concert.”

 

Mission Accepted

In nominating him for the Healthcare Heroes award in the Collaboration category, Michael Knapik, Baystate’s vice president of Government and Community Relations, noted that Pirraglia — an attending physician who sees some of the city’s most vulnerable patients at Baystate Mason Square Neighborhood Health Center and also a professor of Medicine at UMass Chan Medical School – Baystate who teaches residents at Baystate High Street Health Center and Baystate Brightwood Health Center — has always been mission-driven.

“This became especially important as the COVID pandemic snapped into sharp focus the inequities that have been occurring in healthcare,” Knapik said. “People who were already suffering due to inequities related to their vulnerabilities — socioeconomic, racial, ethnic, and identification factors as well as medical comorbidity all contributing — were now at highest risk from COVID-19 in terms of cases, hospitalizations, and death.”

But Pirraglia himself stressed multiple times during his interview with BusinessWest that he’s not the Healthcare Hero here, not really.

“I can’t emphasize enough how important our community health workers were in this work,” he said. “We were the coaches, but they were the players; they were the ones on the field making this happen. Based on priority lists that we made for them, they were able to reach out to patients and find out what their needs were. We created a needs assessment, and then the CHWs were the ones who came up with a contact-free delivery system. COVID mitigation isn’t their primary work, but they jumped in with both feet: ‘what do you need us to do?’ If you ask me, they’re the heroes.”

As the initial surge eased and vaccines became available early in 2021, the workgroup pivoted to that effort, as vaccination delivery to traditionally underserved groups has been a challenge in a state where early allocations from the federal government were deemed insufficient to supply both mass-vaccination sites and smaller providers, Knapik noted. The rollout through a state registration site put those without access to the internet, as well as transportation to such sites, at a disadvantage.

To address this, Baystate started to vaccinate patients age 75 and older from its community health centers in lockstep with the state’s phased rollout, with staff calling patients and inviting them to get vaccinated. In all, they were able to vaccinate 650 people over the course of six weeks, many of them individuals who would have had difficulty getting to any of the state sites. Meanwhile, the workgroup used a series of webinars and other outreach programs to communicate the importance and safety of vaccines.

Pirraglia and his team prepared a lengthy article for the International Journal for Equity in Health last year called “COVID-19 Mitigation for High-risk Populations in Springfield,” detailing the workgroup’s efforts. It concluded, “our highly intentional and methodical approach to patient and community outreach with a strong geographic component has led to fruitful efforts in COVID-19 mitigation. Our patient-level outreach engages our health centers’ clinical teams, particularly community health workers, and is providing the direct benefit of material and service resources for our at-risk patients and their families. Our community efforts leveraged existing relationships and created new partnerships that continue to inform us — healthcare entities, healthcare employees, and clinical teams — so that we can grow and learn in order to authentically build trust and engagement.”

That’s not to say the group couldn’t have done some things differently, Pirraglia said. “It’s difficult because we’re not in a setting where these entities would necessarily be meeting and collaborating. So there was probably more we could have done that was broader and more in concert.

“But I feel confident that, if another crisis came, we could convene another group, or at least use the methodology we used,” he continued. “Certainly, the community outreach and patient-oriented piece of it worked really well, and we’d probably carry that forward if we had another crisis. It really was, in my mind, highly effective.”

 

Mission Accomplished

As noted earlier, Pirraglia has always taken a mission-based approach to care.

“What I mean by that is we take care of a traditionally underserved population with a lot of social challenges in their life,” he told BusinessWest. “These are patients who have difficulty with travel, with food, with shelter, with a lot of other issues in their lives. So just being able to deliver care is more challenging because the patients oftentimes have these other contexts to deal with. Our work has been to try to deliver the best care we can to our patients despite some of the challenges they face.”

Throw in a pandemic, and … well, you can see why we consider the effort heroic, even though Pirraglia doesn’t consider himself a hero.

“It was a really gratifying experience to have people totally on point, using their expertise in trying to figure out this really scary problem,” he said. “We learned that you can be nimble, you can be collaborative, you can tackle a really complex problem. And when you’re working on a group like this and the communication is good, the sense of mission is good, and there’s clarity about where we’re going with it, great things can happen.”

 

Joseph Bednar can be reached at [email protected]

Healthcare Heroes

Collaboration In Health/Wellness

Collaborators in DASHH include Revitalize CDC, Baystate Health, Health New England, the BeHealthy Partnership, Holyoke Medical Center, the Public Health Institute of Western Massachusetts, the Pioneer Valley Asthma Coalition, and the Green & Healthy Homes Initiative.

This Coalition Keeps People Healthy in Ways Its Partners Couldn’t Achieve Alone

If there’s anyone who understands the impact of asthma in Greater Springfield, it’s Sarita Hudson.

Specifically, as director of programs and development for the Public Health Institute of Western Massachusetts and manager of the Pioneer Valley Asthma Coalition, she understands the connections between one’s physical environment and health — and the factors that have consistently placed Springfield high on lists of riskiest places to live with asthma. But even the Asthma Coalition has its limits.

“We had been doing asthma interventions, working with community health workers, working with clients, doing education, helping them identify triggers,” she said. “But it’s not enough if we can’t actually fix anything in the home.”

Meanwhile, as vice president of Public Health for Baystate Health, Frank Robinson understands the many ways the system’s community health programs and providers promote preventive health and wellness.

“We had been doing asthma interventions, working with community health workers, working with clients, doing education, helping them identify triggers. But it’s not enough if we can’t actually fix anything in the home.”

Still, “Baystate would never be going out and creating healthy homes by doing environmental changes and mitigations,” he explained. “That is not the work of the healthcare system. To be aligned with someone who does that work and gets the health implications and health impacts is perfect, though — it makes a perfect marriage.”

That organization would be Revitalize Community Development Corp. (CDC), which does have a long history of making critical repairs, modifications, and rehabilitation on the homes of low-income families with children, military veterans, the elderly, and people with disabilities.

When these three organizations started talking — about asthma and other issues — they were intrigued by what they might accomplish by working together, said Revitalize CDC President and CEO Colleen Loveless.

“We’d been doing some of this work — mold remediation, pest control — but hadn’t formalized the process in collaboration with insurance companies and the healthcare system,” she told BusinessWest.

Now, thanks to a collaboration called Doorway to an Accessible, Safe and Healthy Home (DASHH), these three organizations are not only identifying families in need of intervention for environmental health issues, and not just educating them on lifestyle changes, but actually making the necessary physical changes to their homes.

“We started talking, and we applied for a technical-assistance grant from the Green & Healthy Homes Initiative in Baltimore. They’ve been doing this work for decades,” Loveless explained. “We were one of five sites awarded that technical-assistance grant.”

Baystate followed with a capacity-building grant, other state grants followed, and DASHH was in business. Since its beginning in 2015, the program has served 130 households with asthma remediation and education, as well as 101 households for age-in-place modifications. Last year, it launched a COVID-19 response project (more on that later), impacting more than 1,550 households and approximately 6,881 individuals.

“It’s a business model that shows that, by intervening and creating healthy homes through environmental remediation, removing asthma triggers, and improving the physical environment, we could reduce asthma incidence in high-risk populations,” Robinson said.

Families referred by Baystate for environmental interventions receive three to five visits to conduct testing, at the start and end of the process, and provide education on how to keep the home clean and safe. If needed, Revitalize CDC brings in services ranging from air-duct cleaning to mold remediation; from pest control to floor covering and replacement, and also provides air purifiers, HEPA vacuums, and cleaning supplies.

By partnering with health-centric organizations, Colleen Loveless (center) and Revitalize CDC was able to infuse its home-rehab efforts with a focus on wellness.

By partnering with health-centric organizations, Colleen Loveless (center) and Revitalize CDC were able to infuse home-rehab efforts with a focus on wellness.

“The goal is to keep people from having to access primary care or the emergency room, and not miss school or work,” Loveless said. “Asthma has such a ripple effect.”

 

Better Together

The initial goal of DASHH was to help older people by improving their housing conditions related to asthma and falls, most notably by providing home assessments and home repairs to help them stay healthy and age in place. Breaking down this enterprise that has earned the title of Healthcare Hero for 2021 in the Collaboration category, the individual honorees are:

• Revitalize CDC; which performs assessments and interventions for adults and children with asthma and COPD and makes safety modifications and aging-in-place improvements so seniors may safely remain in their home;

• The Public Health Institute of Western Massachusetts, which provides support on asthma issues; measurement evaluation; support and coordination for referrals, education, and outreach; coordination and support for asthma home-visiting services; and technical assistance and support, as well as providing materials and services in Spanish;

• Baystate Health and the BeHealthy Partnership (a MassHealth accountable-care partnership plan option made up of the Baystate Health Care Alliance and Health New England), which provide referrals to DASHH through five health centers: Baystate General Pediatrics at High Street, Brightwood Health Center, Caring Health Center, High Street Health Center Adult Medicine, and Mason Square Neighborhood Health Center; and

• The Green & Healthy Homes Initiative, a national network that provides technical assistance on planning, database services, and access to best-practice strategies. The organization worked with the other partners on feasibility studies to come up with ways to fund interventions in the home and determine how those efforts might impact healthcare costs and decrease healthcare utilizations regionally.

After its initial success with Baystate, Revitalize CDC expanded its service area in 2019 to begin collaborating with Holyoke Medical Center and its team of community health workers and navigators. To boost such efforts, the city of Holyoke recently awarded Revitalize CDC’s Healthy Homes Program $100,000 from American Rescue Plan Act funds.

DASHH serves low-income families in Hampden County, which ranks last among the Commonwealth’s 14 counties for health outcomes and health factors for racial/ethnic groups. Springfield had been the asthma capital of the U.S., according to the Asthma and Allergy Foundation, until 2019, and now ranks 12th — still not the most desirable ranking, but an improvement, to be sure.

“You talk to the families, and you see that this is the kind of impact that changes their health,” Hudson said of DASHH’s efforts. “It means they can breathe easier and get the supplies they need.”

For instance, in some cases, “the ventilation ducts have never been cleaned, and every time the heat comes on, they have an asthma attack. Now they’re clean, and it doesn’t happen,” she went on. “Some of these are small, simple repairs.”

This issue has been important to Hudson for a long time, through the Pioneer Valley Asthma Coalition, which was formed 15 years ago to address childhood asthma by improving medical and self-management of the condition, as well as by reducing environmental triggers.

The coalition focuses on outdoor air pollution and indoor air quality and has successfully advocated for new policies, including statewide regulations to prohibit tobacco sales to those under 21; green cleaning policies and procedures adopted by Holyoke Public Schools; an ordinance against burning construction and demolition debris; and asthma protocols and an idle-free vehicle policy adopted by Springfield Public Schools, among many other successes.

It’s work — not just the physical interventions, but education of homeowners, landlords, and primary-care physicians — that should be happening on a wider scale, Hudson said, not just in homes, but in schools and other older buildings where people gather.

“We really see a lot of our housing stock as old, with deferred maintenance, including so much of our rental housing. That’s why we are pleased to see more funding around whole-house renovations.”

 

Quick Pivot

Last year, the DASHH coalition began supporting patients at risk of contracting COVID-19 by providing them with essential supplies and access to nutritious food at home. It made contactless deliveries that also included COVID-prevention supplies, including disinfectants, microfiber cleaning cloths, cleaning gloves, dish detergent, food-storage containers, hand soap, disinfectant wipes, paper towels, and food from local pantries.

“These are people who were quarantining, and we were providing them with cleaning supplies, hand sanitizer, and facemasks — and we found many were food-insecure, so they were provided food from local food pantries,” Loveless said. “The whole DASHH program just expanded from asthma to COVID, and we’re still seeing it now.”

Meanwhile, she’s excited about seeing the coalition continue its broader work — and those regional asthma statistics improve further.

“It’s been a really, really great partnership. It’s a win-win situation — the healthcare system saves money, we’re serving more low-income families in need, and patients are healthier. So it’s really a win-win-win.”

Robinson agrees. “I think the role of Revitalize and other housing providers that understand these issues have made a difference — and make healthcare providers’ jobs much easier,” he said. “They have been instrumental partners in creating safe and healthy houses for older adults as well as creating healthy homes for folks with respiratory diseases, asthma in particular.”

The work is both deeply collaborative and, dare we say, heroic.

“I’m so appreciative,” Loveless said. “Together, we’re able to serve more people in need.”

 

Joseph Bednar can be reached at [email protected]

Healthcare Heroes

She’s One of Many Improving Quality of Life for People with Dementia

Carol Constant

As director of Community Engagement at the Loomis Communities, Carol Constant has developed a number of ways residents of the three sites — Loomis Village in South Hadley, Loomis Lakeside at Reed’s Landing in Springfield, and Applewood at Amherst — can be, well, engaged with the world outside their walls.

“It’s not a silo — we’re out supporting the community, and the community is invited to be a part of what we do,” she said, citing examples like supporting awareness walks, food drives, and other events relevant to area seniors.

But it was a resident of Loomis Village, named Rachel Tierney, who got her thinking about the concept of engagement in a new, broader way.

“She had been a long-time caregiver for her husband, and she’s a retired psychiatric nurse,” Constant said. “She had heard about the dementia-friendly movement, and when she saw my title, she approached me and said, ‘hey, do you want to think about this?’”

Constant did. In fact, the idea of dementia-friendly communities — a movement that aims to teach first responders, municipal workers, and business owners how to interact with people with dementia — appealed to her, so she was pleased when her first meeting in South Hadley, in March 2015, drew a wide range of stakeholders: fire and police chiefs, the town administrator, a librarian, the senior-center director, and Chamber of Commerce members, to name a few.

“They’re going to the bank, they’re going to the grocery store, they’re out in the community. So how can we, as a broader community, recognize it and be helpful to them?”

“We sat them down in a room and said, ‘we have this idea about educating and raising awareness about dementia. How have you experienced dementia in your daily lives?’” she recalled. “These are busy people, and we promised to take only an hour of their time, but just going around the room hearing the stories took an hour. Everyone had a story.”

That’s because, of the approximately 5.3 million Americans currently living with Alzheimer’s disease or some form of dementia, 70% are living in the community, rather than assisted living or nursing care — and 30% of that group are living alone. Going by these estimates, approximately 8,460 individuals with dementia in the Pioneer Valley are living in their homes, and 2,538 are living alone.

“They’re going to the bank, they’re going to the grocery store, they’re out in the community,” Constant said. “So how can we, as a broader community, recognize it and be helpful to them?”

More than four years after that first meeting, the loose coalition known as Dementia Friendly Western Massachusetts (DFWM) has drawn the support of dozens of area organizations, sponsored myriad awareness and education events, and, most importantly, made area communities better places to live for people with dementia.

It’s an effort that will only become more important as Baby Boomers continue to march into their senior years, living longer, on average, than previous generations. The number of Americans with Alzheimer’s is projected to rise by 55% by 2030, and by 2050, the Alzheimer’s Assoc. estimates the total number could explode to nearly 14 million.

Proponents of the dementia-friendly movement say greater public awareness and support programs will reduce the stigma of dementia and improve the quality of life for these individuals and their families. In addition, greater public awareness may lead to earlier detection and earlier treatment.

“There’s a huge stigma around dementia,” Constant said. “How can we make people recognize that there’s no shame in it, that nobody who has dementia did something bad? One of the goals is to destigmatize it because people get worried they’re going to embarrass themselves.”

It starts with small steps, she added. “Just check yourself. You may be in a hurry at the store, there’s a long line at the register, and this person is having a hard time counting their money. So slow down and recognize what’s happening and how to be helpful.”

For taking those steps along with a raft of like-minded individuals and organizations, Constant is positively impacting an often-forgotten population, and teaching entire communities that there’s plenty of work left to do.

Knowledge Is Power

The work of Dementia Friendly Western Massachusetts includes several basic activities, including:

• Education and training for those who might encounter an individual with dementia, including fire and EMT first responders, faith communities, and frontline workers in banks, retail stores, and restaurants;

• Development of support groups, memory cafés, and other programs that support individuals and their families; and

• Development of a website and materials that provide a calendar of events and resources available to families the region.

These supports are critical, Constant said, as research shows that supportive care helps people living with dementia and their caregivers experience less physical and emotional stress, better health, fewer hospitalizations, and less time in long-term-care facilities. Additionally, caregivers need support, as caring for someone with dementia puts a strain on their physical and mental health as well as relationships with other family members. Finally, educational programs that build awareness of the challenges faced by these individuals and their families will help assure that, when they are in the community, they are treated with respect and dignity.

To Constant, much of this work comes down to one question. “How can we be supportive of people in the community and destigmatize dementia? When they get embarrassed and shamed, they isolate and become depressed, and that does not help — that further exacerbates the problem for them. This is a movement to raise awareness and destigmatize dementia, in addition to providing education and support for people in the community about dementia.”

Carol Constant says many people with dementia are out in the community, and the community needs to know how to interact with them.

Take memory cafés, for example — places where people with dementia and their loved ones and caregivers can hang out and relax, free from the stress that often accompanies other community outings, because everyone knows everyone else in the room understands their experience.

“So often, we get caught up with caregiving, and we forget to have fun with the person we’re caring for,” she explained. “So it’s an hour, hour and a half where people can meet someone in a similar situation, hang out together, relax, and have fun.”

Memory Cafés have been established at Armbrook Village in Westfield and councils on aging and senior centers in Holyoke, South Hadley, Belchertown, Hampden, Greenfield, and Shelburne Falls. Heritage Hall East in Agawam is in the process of starting one.

Meanwhile, dementia support groups have been established at Armbrook Village, Heritage Hall East, Loomis House, the Holyoke Soldiers Home, and the Belchertown, Holyoke, and South Hadley councils on aging and senior centers.

Constant is gratified to be recognized as a Healthcare Hero, especially considering the category — Collaboration in Health/Wellness. On several occasions during her interview with BusinessWest, she emphasized that she can’t take credit for all this work; it’s about creating partnerships with area agencies that serve older adults. “We got the right people together in the room, and we started programming.”

Those partners in Dementia Friendly Western Massachusetts include the Alzheimer’s Assoc.; the communities of South Hadley, Holyoke, and Springfield; the Department of Elder Affairs; Holyoke Medical Center; WestMass ElderCare; Greater Springfield Senior Services; Holyoke Community College; Chapin Center; A Better Life HomeCare; Springfield Partners for Community Action; Grupo de Apoyo de Demencia at Baystate Medical Center; the Public Health Institute; PeoplesBank; O’Connell Care at Home; Massachusetts Councils on Aging; Silverlife Care at Home; River Valley Counseling Center; Safe Harbor Adult Day Services; UMass College of Nursing; Springfield College; and the Holyoke VNA.

The purpose of their collective efforts, simply put, is to build broader community awareness of the issues around dementia, not only through the website and materials promoting support resources and programs, but by encouraging and training organizations, agencies, and towns in the region to become involved in the dementia-friendly movement.

First Response

To date, DFWM organizations have established and led hundreds of educational programs across the region, including educational programs to a wide array of audiences, including first responders, city and town employees, nursing homes, rehabilitation centers, councils on aging, schools and colleges, hospitals, nursing homes, home healthcare agencies, chambers of commerce, businesses, Rotary clubs, faith communities, retirement communities, civic organizations, elder-law programs, and local and national conferences.

Each target audience has different needs and different ways to connect. For example, first responders often feel frustration when encountering people with dementia, because their role is often to stabilize a situation and then move on. When they encounter a situation where it’s obvious that someone in a home is struggling with dementia and may not have the supports they need, they often feel there’s not much they can do, Constant said.

With that in mind, Dementia Friendly Western Massachusetts developed a visual resource, the size of a business card, that’s printed, in both English and Spanish, with the contact information of organizations that can provide dementia-related resources to families. First responders can leave this card with a family when they feel it’s warranted.

“First responders rush in and rush out — assess the situation and get everyone safe. Then they leave,” Constant said. “There’s a sense of frustration when they know the situation is bigger than ‘we got the fire out.’ This is something they can hand to the family member.”

Or, when police arrive at a home, they might encounter someone who’s agitated and on edge, but not dangerous or mentally ill — they simply have dementia and are trying to navigate a stressful situation.

“Maybe we need to slow it down a little bit, make eye contact, get at their level,” she said. “When I talk to first responders, I see and hear that they do this naturally, but a little layer of education around it is also really helpful. And I’ve heard that from police chiefs in all the communities we’ve been working in.”

It’s just one way she and the other coalition members are changing the conversation around dementia — right down to the very words people employ.

“So much of the language we use around dementia is ‘afflicted,’ ‘stricken,’ ‘the tsunami’ — all this negative language,” she noted. “No wonder it’s stigmatized. So, how do we make people feel not ashamed, not embarrassed about it, and not isolated?”

The community education goes beyond words, as well, and gets to the heart of how people with dementia are treated. For instance, people will sometimes stop talking to an individual with dementia altogether — instead always addressing their companion — even though there’s often many years between diagnosis and the time when someone becomes so debilitated they can’t go out anymore.

“The essence of that person is still there,” Constant said, citing a Maya Angelou quote — not first uttered in reference to dementia, but nonetheless applicable: “people will forget what you said, people will forget what you did, but people will never forget how you made them feel.”

“They can still experience joy; they can still experience humor,” she went on. “So what are we doing when we say, ‘you are no longer able to cognitively keep up with this fast-paced conversation, so sit in the corner by yourself.’ One of the goals of all this work is to improve quality of life.”

That goes for everyone — individuals with dementia, their care partners, and the community as a whole.

Filling the Room

Constant is grateful the Loomis Communities gives her a “long leash” when it comes to her work with Dementia Friendly Western Massachusetts, but not surprised, as it’s really in Loomis’ best interest.

And she’s also thankful for the individual moments that demonstrate the value of engaging people with dementia fully in society.

“Having someone who’s living with dementia come up and talk to you and start a conversation and share their experience and that of their care partner, it’s wonderful to see,” she said. “If we can do one thing to make the quality of life for someone better, why wouldn’t we?”

When her mother-in-law was diagnosed with dementia 30 years ago, she added, she didn’t have the resources available today; no dementia-friendly initiatives existed back then. But she wishes they had. “I learned all my lessons the hard way. I wish I had known as much about it as I do now.”

Still, there’s a lot to learn, she added, and a lot of passionate people — again, this is certainly a collaborative award — working on improving quality of life, one person and one community at a time.

“It’s been great making these connections, and that’s really powerful,” Constant concluded. “If it was up to just one person to do this, it wouldn’t happen. It’s all about getting all the right people in the room.”

Joseph Bednar can be reached at [email protected]

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