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JGS Lifecare Puts Focus on Effective Memory Care

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From left: Beth Cardillo, Mary-Anne Schelb, and Dalila Jones of JGS Lifecare.
Healthcare News Special Coverage

Empathy and Engagement

From left: Beth Cardillo, Mary-Anne Schelb, and Dalila Jones of JGS Lifecare.

From left: Beth Cardillo, Mary-Anne Schelb, and Dalila Jones of JGS Lifecare.

While explaining the many ways in which JGS Lifecare folds memory care into all its services, Delila Jones noted that she’s a certified trainer in the Virtual Dementia Tour, a process that every employee on the campus goes through, no later than day two.

“We put our staff in the shoes of someone who has dementia. That’s done by providing external stimuli and an environment to replicate what would be confusion, anxiety, neuropathy, lack of dexterity in your fingers, visual limitations,” said Jones, Life Enrichment director at JGS.

“We do all those things as kind of a crash course into what it would feel like to be in the shoes of someone with dementia for a total of eight minutes — and that’s really all it takes. Eight minutes, and staff members cry. They come out changed because they’re getting an understanding, on a personal level, of what it feels like to be out of control. It allows us to reach the heart of what it’s like and then give them the compassion and empathy they wouldn’t receive if they didn’t go through the experience.”

Beth Cardillo, a long-time regional leader in the memory care field who now works part-time at JGS as a geriatric social worker in the Leavitt Family Jewish Home, a skilled nursing facility, has plenty of experience with the Virtual Dementia Tour, which simulates the physical and sensory challenges of dementia using special goggles, headphones, and gloves that distort vision, hearing, and touch. And she understands its impact.

“This is a truly unique experience. One of the takeaways we hear from everybody when we ask, ‘what did you get from this eight-minute experience?’ is ‘slow down, slow down your life, slow down the way you talk to people.’ It takes 90 seconds for somebody with Alzheimer’s to process what you say to them. Normally, we talk so fast and we’re so busy and really haven’t learned to slow it down. And it just makes a huge difference.”

Jones agreed. “I kind of measure the success of our training with how many people cry because I feel like you’ve got to touch the heart. You have to reach the heart in order to really get that point driven through — because, unfortunately, dementia breaks hearts. So in order for us to care properly, we have to kind of have a broken heart for them.

Beth Cardillo

Beth Cardillo

“It takes 90 seconds for somebody with Alzheimer’s to process what you say to them. Normally, we talk so fast and we’re so busy and really haven’t learned to slow it down. And it just makes a huge difference.”

“And it’s truly effective,” she went on. “Just this week, we did our dementia training, and I had two or three CNA staff say, ‘we were CNAs for years, we know that we’re good staff, but I need to up my game. I didn’t realize that I can improve.’ And to have someone reach a point where they’re evaluating themselves and looking to improve because of this training, because they’re learning something new about what it’s like to have dementia, I think that’s a success.”

The Garden, a separate, secure neighborhood in the Ruth’s House assisted living facility on the Longmeadow campus, specifically caters to individuals with increased cognitive and physical limitations, including Alzheimer’s and other forms of dementia. But JGS has, over the years, incorporated specific memory-care training across its continuum of services, from Legacy Lifecare VNA & Hospice to Wernick Adult Day Health Care; from the Leavitt Family Jewish Home (where 80 of 200 beds are secure) to the Sosin Center for Rehabilitation.

That’s because the memory-care population is on the rise as Americans live longer than ever — and early-onset dementia in younger people is ticking up as well. So the model JGS has adopted, making sure all the points along its continuum of services can handle different levels of dementia, has become dominant in the world of senior living and care.

“I really work hard with families to help them understand that their loved one is in the right place, and that we are going to do everything for that experience to be as purposeful as possible,” Cardillo said.

“People just feel an incredible amount of guilt: ‘my mother took care of me, but I can’t take care of my mother at home anymore.’ But at some point, things change. ‘I promised my mother she would never go into a nursing home.’ Well, at some point those negotiations are off the table. You just can’t do it,” she added, explaining the transition so many families experience when choosing a residential memory care situation, whether assisted living or skilled nursing.

“The nursing home is more of a medical model. We’re more equipped to deal with medication changes and things like that more quickly,” she said. “And the training with the staff is called a habilitation model, where, unless it’s a safety issue, the resident is always right. We want to avoid conflict. We want to make it as engaging as possible.

“I really work hard with families to help them understand that their loved one is in the right place, and that we are going to do everything for that experience to be as purposeful as possible.”

“Do I care if someone thinks it’s Friday, and it’s Tuesday? No. Whatever he thinks, unless it’s safety, I don’t care. Make it Friday, make it Christmas, make it whatever. All good,” she went on. “And I think we work hard at promoting that. It’s all about relationships that we develop with our residents in the nursing home. They can read your mind. They know if you’re on your game that day or not. And it’s up to us to provide the best relationship we can with each person.”

 

Home and Garden

Then there’s Ruth’s House, the assisted living facility with its own dedicated memory neighborhood, the Garden, where employees are specifically trained to care for this population.

“When it comes to caring for those who have memory issues, we adapt to them, as opposed to someone who may not have those issues, and are able to communicate their needs properly and efficiently,” Jones said.

“When it comes to someone who’s living with dementia, we are the ones that have to adapt. We are the ones that have to become the detectives and be purposeful in everything that we do for them. We are more sensitive and gear everything toward how they may respond. We are more fluid. It’s more organic,” she went on.

“When we are facilitating programs, we’re also seeing how this person feels today. It’s very important that all of the staff are trained and educated to work with those living with various forms of dementia because it’s a whole different world. It’s a whole different way of communicating.”

In that setting, Jones said, the staff makes sure to provide a daily schedule of activities that engage the whole person — physically, emotionally, socially, and spiritually — while also communicating with families who may be anxious about their loved one’s experience.

“The families are pivotal in the care of the seniors. So, we must maintain a very healthy relationship with the families.”

“We take the same approach we’d have toward all the seniors [at JGS Lifecare], which is compassionate care, understanding, empathy, making sure that their feelings are validated, and then working together as a team to accomplish a goal together collectively,” she explained. “That’s really important when it comes to families as well — because we are that bridge to connect the families to these seniors living with various forms of dementia. The families are pivotal in the care of the seniors. So, we must maintain a very healthy relationship with the families.”

Families — often with the help of the resident — also fill out what’s called a resident profile, a kind of life story including a social history, background, education, interests, hobbies, and more. “It allows us to have the information and the tools to have a personalized approach to care as they join us in living here,” Jones said. “With that information, if I know Mary was a teacher, then I can definitely tap into that, no matter what stage of dementia she’s in.”

Tapping into personal history is important across the campus, even outside the dementia neighborhood. One five-year resident of Ruth’s House, Johnny Scalia, affectionately known as “Johnny Rocket,” is a DJ with infectious energy who has shared his musical mixing skills with residents and families over at the Leavitt home. “I’m living my best life here,” he said. “The music keeps me going — and I love making people happy.”

Mary-Anne Schelb, regional director of Business Development at JGS, told BusinessWest that care at any of the JGS facilities is “really a matter of meeting people where they are.”

The Garden at Ruth’s House also features a sensory room, highlighted by a high-definition projector that shows soothing scenes on a wall — think ocean, nature, and the like.

“It’s so soothing and calming and inviting,” Jones said. “Just recently, for a resident who is on hospice and who has a hard time connecting in certain programs, we played a classical symphony through this projection. It was like you were there. And his caretaker was in tears, seeing how he was able to enjoy that moment with something that he passionately loved.”

Schelb added that the room is also used to de-escalate if somebody gets a little bit agitated or is sundowning. “It’s a very calm space that is utilized to decompress or kind of level them out. And it’s been very, very successful.”

 

Growing Need

About 7 million Americans live with Alzheimer’s disease, a number projected to rise to nearly 13 million by 2050, according to the Alzheimer’s Assoc., mainly due to the aging of America and the soaring over-65 population. That makes it critical for senior living communities to offer specific care to people with memory issues.

“However, I would like to point out the advent of new medications and infusions that are happening now,” said Cardillo, who serves on the executive leadership committee of the regional Alzheimer’s Assoc. chapter. “In the last five years, we have some medications that are actually looking at getting rid of the amyloid plaque in the brain, not just treating the symptoms. We have some new medications for people that are in the beginning stages, and it’s promising — I think it’s a springboard for better medications to come.”

What that means, she believes, is that “we are going to see the first survivor of Alzheimer’s in our lifetime.”

In the meantime, JGS Lifecare will continue to take care of those living with dementia locally.

“We genuinely want to take care of the person as a whole, and we’re providing various forms of engagement and opportunities to provide quality of life to our seniors,” Jones said, noting, as one example, a staff member who helps residents use an Oculus Quest headset to allow residents to access virtual reality experiences, “to walk through an ocean or get an experience on a different side of the world. And this is all thanks to the technology that we have today.

“So we’re growing; we’re expanding. We’re providing quality of life with just crayons and paper, if that’s something that they enjoy, or paint. But we’re also transforming for the current age, moving forward with technology, and I’m pretty proud of where we’re going.”

“And,” Cardillo was quick to add, “we’re not just treating our residents — we’re treating our families.”

Coalition Aims to Make Community More Dementia-friendly

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Attendees of the recent Springfield Dementia Friendly Coalition
Health Care

In Search of Empathy

Catherine Williamson

Catherine Williamson says empathy is at the heart of the dementia-friendly movement.

Empathy is a quality America can always use more of — and that’s especially true, Catherine Williamson said, when it comes to families struggling with dementia.

“What attracted me to the dementia-friendly movement is being able to help individuals adjust to what’s going on in their lives,” she recently told a group of business leaders, who met for lunch at the Student Prince in Springfield for a presentation by the Springfield Dementia Friendly Coalition.

“It’s about empathy, and some of us are not great at being empathetic,” she went on. “Our lives are fast-paced, and we’ve got a lot going on — kids, jobs, husbands and wives, volunteering. We’ve got so much going on that, sometimes, we forget to stop and think about someone else not being able to move as fast as we can, or understand things the way we can.”

Williamson, a certified dementia practitioner and gerontologist with SilverLife Care at Home, said a goal of the dementia-friendly movement is to educate the community, and even the loved ones of people with dementia, about how daily experiences differ for individuals with that condition — everything from going to the library to visiting a doctor; from having a financial-planning meeting with an attorney to simply eating out at a restaurant.

To demonstrate, she led the lunch attendees in a virtual ‘dementia experience,’ in which participants use common objects to block or hinder their eyesight, hearing, range of hand motion, and other faculties, then try to communicate with each other — again, as a way to create empathy and reinforce the need for dementia-friendly changes in society.

“People with functional limitations are dealing with this constantly,” she said. “Imagine how much this impacts their daily lives, their relationships, getting around, even wanting to be out in the community. If you felt like this all the time, in this impaired state, you’d probably want to stay home, too. We need to think about how to make our communities and businesses and public spaces a little easier to navigate.”

The business leaders at the lunch shared their professional and personal experiences with dementia and learned about what it would mean to make Springfield a dementia-friendly community — a designation that an increasing number of Massachusetts cities and towns have been pursuing, one in which businesses, municipal departments, and other entities make a collective effort that help people who are memory-challenged to function in the community and live independently for as long as possible.

“Sometimes, we forget to stop and think about someone else not being able to move as fast as we can, or understand things the way we can.”

“What can we do as a community to improve the quality of lives?” asked Anna Randall of Greater Springfield Senior Services, one of the coalition members. “Being dementia-friendly means different things to different communities, depending on their populations and what resources they already have. We’re here to ask businesses what we can do to help your clients and make this community dementia-friendly.”

At a Loss

Nearly 5.1 million Americans age 65 and older are living with Alzheimer’s disease, the most common form of dementia, and the number is expected to reach 7.1 million in the next decade. Nearly 60% of people with dementia live in their own communities, and one in seven live alone, creating an urgent need, dementia-friendly advocates say, for communities to support people with dementia and their caregivers. 

Attendees of the recent Springfield Dementia Friendly Coalition

Attendees of the recent Springfield Dementia Friendly Coalition lunch underwent a virtual ‘dementia experience’ to get a small taste of what’s it’s like to navigate the world with cognitive impairment.

Meghan Lemay, regional manager in the Springfield office of the Alzheimer’s Assoc., said Alzheimer’s disease is a true epidemic, currently the sixth-leading cause of death in the U.S. and the only major disease that has been increasing in incidence — by a 123% rate since 2000, in fact. At the same time, incidences of diseases like cancer and heart disease have been falling.

In addition, she noted, Alzheimer’s is the most expensive disease in America, expected to cost the healthcare system and caregivers some $277 billion in 2018 alone.

“It’s something we have to address on multiple fronts,” Lemay said. “We know it impacts families directly and has a significant emotional impact, but there’s also a significant financial impact for individuals and our communities.”

Springfield, in fact, is disproportionally affected, with a higher rate of dementia than other Massachusetts communities on average. Demographically, meanwhile, the condition affects African-Americans and Latinos at a higher rate than whites.

While individual communities seek the dementia-friendly designation, a state-level organization known as Dementia Friendly Massachusetts is supporting those efforts. On the community level, Randall noted, businesses who go through dementia-friendly training can then display that fact, “to say this company has gone the extra mile to show they care about their community and want to be more inclusive for people caring with dementia.”

“It’s something we have to address on multiple fronts. We know it impacts families directly and has a significant emotional impact, but there’s also a significant financial impact for individuals and our communities.”

Williamson noted that such steps by businesses could include modifying entryways, altering lighting, or changing the ways they interact with customers. And the changes don’t have to be dramatic. For example, a coffee shop in Boston became more dementia-friendly when it complemented its chalkboard menu with large-print menus at the register. “It’s little things like that — different types of things you can do.”

One attendee of the recent lunch in Springfield noted that some businesses have gone the opposite route, citing the increasing use of automated ordering kiosks at McDonald’s and the dominance of self-checkout lanes at Stop & Shop as two developments that can be problematic for certain individuals.

However, on the plus side, many restaurants have embraced the Purple Table training program designed to help visitors with dementia, autism, PTSD, hearing or vision impairment, or other conditions benefit from a more predictable environment and additional accommodations when dining out.

When families make a Purple Table reservation, participating restaurants provide accommodations that work best for that diner, along with extra patience and attention from staff who have been trained to understand different needs and how to best meet them. Those steps might differ depending on the visitor, but the underlying philosophy of empathy and understanding is the same.

Law and Order

The recent lunch gathering was funded by a dementia-friendly capacity-building grant from the Massachusetts Council on Aging under a service incentive grant from the Massachusetts Executive Office of Elder Affairs, allowing the coalition to hold focus-group meetings with local government and public officials, first responders, and members of the business community.

The goal is to make them aware of the issues facing individuals living with dementia, their friends, family, and care partners; to give an overview of the movement; and to elicit their thoughts and engagement in the initiative. In addition, the group will meet with those living with dementia and their care partners.

The coalition chair, Synthia Scott-Mitchell from Springfield Partners for Community Action, noted that “a dementia-friendly community is defined as one that is informed, safe, and respectful of individuals with dementia and their families, and provides supportive options for improved quality of life.”

But legislators can make a difference, too, and recently did, by passing a first-of-its-kind bill — subsequently signed into law by Gov. Charlie Baker — that aims to make life a little easier for individuals with dementia and their families, through a multi-pronged approach.

More than 130,000 people are currently living with Alzheimer’s disease in Massachusetts, and being cared for by more than 337,000 family and friends. According to the Alzheimer’s Assoc., in 2018, Massachusetts will spend more than $1.6 billion in Medicaid costs caring for people with Alzheimer’s.

“Alzheimer’s is the single largest unaddressed public health threat in the 21st century, and we remain on the front lines of this crisis every day here in the Commonwealth,” said Daniel Zotos, director of Public Policy & Advocacy of the Alzheimer’s Assoc., Massachusetts/New Hampshire Chapter. “This legislation follows in the tradition of Massachusetts being a national leader in healthcare, and we commend the governor and Legislature for ensuring everyone impacted by Alzheimer’s gets the quality care and support they deserve.”

Among its mandates, the bill:

• Establishes a comprehensive state plan to address Alzheimer’s disease within the Executive Office of Health and Human Services, while also establishing a permanent advisory council to help coordinate government efforts and ensure that public and private resources are maximized and leveraged;

• Requires curriculum content about Alzheimer’s and other dementias be incorporated into continuing-medical-education programs that are required for granting the renewal of licensure for physicians, physician assistants, registered nurses, and licensed nurse practitioners;

• Ensures proper notification of an Alzheimer’s or dementia diagnosis to the family or legal guardian and provides information on available resources to both the patient and family;

• Requires state hospitals to implement an operational plan for the recognition and management of patients with dementia or delirium; and

• Establishes minimum training standards for social workers in elder protective services, to ensure protection from abuse and exploitation for elders with Alzheimer’s and dementia.

Small Steps, Big Impact

When it comes to making communities more navigable and manageable for people with dementia, every effort helps, Williamson said, noting that the dementia-friendly movement also seeks to raise awareness — often through workplace presentations — of resources available to help families grapping with Alzheimer’s, when they’re not always willing to seek them out because of shame or stigma.

“If we go into your workplace and address your employees, we’re reaching folks that might need help,” she said. “It’s not just about doing the right thing for your customers, but also for your staff — folks who are taking care of their loved ones, but might not want to come forward.”

As the statistics show, those folks are legion. Increasingly, Williamson and her fellow coalition members hope, they are starting to find their communities a little friendlier, in some very important ways.

Joseph Bednar can be reached at [email protected]