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Business of Aging

When Memory Falters

By Mark Morris

 

As we age, the occasional struggle to find a word, or a sporadic lapse of memory, is hardly a cause for alarm. It becomes a concern when short-term memory or trouble finding words becomes a constant battle, because those are often signs of dementia.

Memory loss is usually observed by others and not the person who is afflicted. According to Lori Todd, executive director of Loomis Lakeside at Reeds Landing, a person tends to lose their short-term memory — such as not remembering what they had for breakfast — while their long-term memory stays sharp, and they can tell you all about what happened in 1950.

“We also see the person ask a question, get an answer, and then, 10 minutes later, ask the same question,” Todd said.

Understanding the difference between benign memory loss and early stages of dementia can be difficult for families of aging parents because confronting dementia often comes with lots of fear and denial.

“They know you are an important person in their life, and they know there is an emotional connection. Words aren’t as important as the emotions.”

Beth Cardillo, executive director of Armbrook Village in Westfield, works with families to better understand what is happening with their loved ones. Overcoming their fear and denial is the first big hurdle.

“Family members might admit that mom has a little dementia, but not Alzheimer’s,” Cardillo said. “They treat Alzheimer’s like it’s a dirty word.”

While there are more than 100 types of dementia, Alzheimer’s disease accounts for nearly two-thirds of all dementia diagnoses. Cardillo noted that it’s not unusual for someone to have Alzheimer’s as well as one or two other types of dementia.

On the last Wednesday of each month, she runs a caregiver support group that gives families a chance to hear what others are going through while caring for an aging parent.

Beth Cardillo

For loved ones of individuals with dementia, Beth Cardillo says, overcoming fear and denial is often the first challenge.

“I don’t say much; I’m simply there as a resource,” she said. “Most of the talking is done by group members who help clear up misconceptions and help others realize they are not alone.”

Cardillo called it a true support group, one that has been active for 10 years, the last two years via Zoom, and she welcomes any caregiver to join the group. “And I mean anyone because it’s a virtual group. We have family members from all over the country who join in the discussion.”

 

Keep Talking

Open communication with families can help them overcome some of the fear and denial that comes with seeing a loved one losing their cognitive abilities. This can also lead to better interactions.

One past practice which is now discouraged was to try to reality-orient an individual with dementia. For example, if a 95-year-old asks to see her mother, the natural tendency is to point out that her mother would have to be 130 years old. Todd recommends, instead of a rebuttal, just going with it.

“It’s an opportunity to engage and say, ‘let’s talk about your mother and all the wonderful things about her,’” she explained. “By going on that journey, it makes them feel good and improves their quality of life.”

Often, a son or daughter will insist on asking the parent with dementia to say their name and then, if they can come up with it, assume they are having a good day. Cardillo said knowing their children’s names doesn’t really matter and can cause embarrassment for the parent if they don’t succeed.

“They know you are an important person in their life, and they know there is an emotional connection,” she added. “Words aren’t as important as the emotions.”

At Reeds Landing, people with dementia live among the other residents. While resident assistants are there to help when needed, those with dementia have a daily routine and feel more included.

Lori Todd

“Concentrate on what makes them happy. Their long-term memory is still there, so it’s an opportunity to encourage talking about good memories they have.”

“We try to keep them at their highest level of functioning in more of a home-like setting rather than an institutional one,” Todd said.

People with dementia are capable of learning and in many ways remain the person they have always been, Cardillo added. “There are still moments of lucidity. Just because you have dementia, does not mean you are stupid.”

Programs that encourage a fail-free environment tend to work well for those with dementia, such as the painting program at Armbrook Village called Memories in the Making.

“Lots of conversation comes out during these sessions,” Cardillo said, recalling one resident who painted a summer scene. When she asked what that meant to the artist, she reminisced about vacations in Maine many years ago. “It doesn’t matter what they are painting; it’s really an opportunity to share their feelings and tell their stories.”

While staff at local senior communities are trained to look for signs of dementia in residents, it can be more difficult for seniors living at home. Todd usually sees an increase in phone calls after someone comes home for Thanksgiving, assuming their mom or dad is doing fine, only to discover things are not going well.

“We encourage people to talk with their parent’s physician when there has been a change in behavior,” she said. “The physician is a good resource because they know the baseline health of the parent.”

 

Past Meets Present

Helping people understand dementia is a constant activity for Cardillo. Seven years ago, she started the Dementia Friendly movement at Armbrook. Through a partnership with the city of Westfield, Armbrook staff train city employees, first responders, local businesses, and the public on how to recognize the signs of dementia and to better communicate with those afflicted with it.

Both Cardillo and Todd acknowledged that dementia can be frustrating for the person and their family. Because there is no cure for dementia, the emphasis then becomes on the person’s quality of life.

“Concentrate on what makes them happy,” Todd said. “Their long-term memory is still there, so it’s an opportunity to encourage talking about good memories they have.”

Music can also be an effective way to promote good memories. Cardillo referenced a study of a group of people with dementia who were suffering from depression. Researchers asked their families what music the person enjoyed when they were young and made a playlist of that music to play on headphones.

“It woke up their brains and changed their moods,” Cardillo said. “We all hear music and it brings us back to a certain time.” Because music gives most everyone fond memories, she added, it’s no surprise that music brings pleasure to those with dementia as well.

Whatever the milestones along the journey, once family members can move past their denial and fear, she noted, they can really make a difference for their parents.

“When people understand that dementia is not something to be feared, they can begin to accept it and be there for their loved ones.” u

Business of Aging Special Coverage

Peace of Mind

Ruth’s House

Ruth’s House dedicates its lower-level Garden neighborhood to memory care.

 

The connection between music and memory is a complex and often surprising one. Just ask the families of loved ones with dementia at Ruth’s House, the assisted-living residence on the JGS Lifecare campus in Longmeadow.

“We ask, ‘what sort of music did your loved one enjoy?’ Then we have volunteers come in and build personal playlists,” said Susan Halpern, vice president of Development and Communications at JGS. “It’s amazing to see the reactions — to see someone who’s agitated get less agitated, or someone who had been very quiet come out of their shell because they’re hearing something that’s very familiar to them.”

Mary-Anne Schelb, director of Business Development, has also seen the results of what JGS calls its music and memory program.

“Maybe they’re not much of a talker, and suddenly they’re singing this song. It’s hard to carry on a conversation with them, but when the music comes on, they remember every word. The artistic and creative ability is really the last to go. It’s in there — we just need to know how to pull it out.”

Or, as Halpern put it, “it’s about meeting them where they are.” That’s why residents’ families fill out a long (around eight pages) resident profile upon admission, Schelb added.

“We really want to get to know your mom or dad, and we want to know what they like and don’t like, because then we utilize that.”

“If they can’t stand bingo, we’re not going to try to push bingo. Or if they love hot-air balloons, we can go up to them and ask, ‘hey, do you know we’re showing a hot-air-balloon movie in the movie room?’ You see their face light up — ‘you are? I love hot-air balloons.’ The profile is time-consuming, but we really want to get to know your mom or dad, and we want to know what they like and don’t like, because then we utilize that.”

Meeting residents where they are is especially important for those with early- to mid-stage memory impairments and other dementia-related diseases who live in the Garden at Ruth’s House, a separate, secure neighborhood that caters to individuals with increased cognitive and physical limitations, including Alzheimer’s and dementia, and where staff members are specifically trained to care for individuals in need of memory care.

Sue Halpern (left) and Mary-Anne Schelb

Sue Halpern (left) and Mary-Anne Schelb say incorporating memory care into the entire JGS continuum makes sense with people living longer and dementia becoming more prevalent.

But what some might not know, Schelb said, is that JGS has, over the years, incorporated specific memory-care training across its contimuum of services, from Spectrum Home Health & Hospice Care to Wernick Adult Day Health Care; from the Leavitt Family Jewish Home to the Sosin Center for Rehabilitation.

Why? 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, of making sure all the points along its continuum of services can handle different levels of dementia, is one increasingly taking hold in the world of senior living and care.

“We were the ones who spearheaded dementia-friendly Longmeadow a few years ago, which was really important to us, to make people aware of the differences of folks that have this higher level of memory loss, because people really didn’t know how to deal with them. They didn’t know what to do, how to act,” Schelb explained. “We wanted to make people aware, so I worked with the senior center, some emergency responders, and we worked with the Alzheimer’s Association and got certified as a dementia-friendly town.”

Similarly, making JGS a dementia-friendly campus was a natural evolution, she noted. “Except for Genesis independent living, every single piece of the campus concentrates on memory care.”

 

Gardening Tools

The Garden gives Ruth’s House an element of security and higher-level care for individuals with dementia, Schelb explained.

“Maybe you start out in traditional assisted living, and as they progress [with memory loss], we could add services to the apartment as long as they’re not a wander risk, and if they do become a wander risk, we’ve got the secure Garden level, which is beautiful inside and out,” she said, noting the waterfall, scenic walkways, and benches out back; the fact that the area is safely fenced in is obscured by the landscaping.

“We just wanted to make it this gorgeous, park-like environment. A lot of people like to walk, and and here they can be outside, and it gives them that sense of freedom.”

In the Leavitt skilled-nursing facility, two nursing neighborhoods are dedicated to caring for people with memory impairments, Halpern explained, while staff of the other JGS programs, like Wernick and Sosin, are trained in working with people with memory loss as well.

“As a campus, we’re caring for elders, and it sort of goes hand in hand that, as people get older, they’re suffering memory loss,” she told BusinessWest. “So we take the care of people with dementia, memory loss, and Alzheimer’s disease as a central care delivery that we train our staff on during orientation.”

That orientation, when staff are taught how to engage with people with dementia, is followed by annual reviews and specific skills-training events during the year, she added, noting that JGS will be using grant funds to expand that skills training.

Ruth’s House’s memory-care residents

Ruth’s House’s memory-care residents take part in both indoor and outdoor activities intended to engage their minds.

“We’re a person-centered campus, and we deal with memory impairment across our entire campus the same way,” Halpern added. “You take the approach that you’re meeting the person where they are.”

Added Schelb, “we’re finding a lot more people suffering from memory loss at earlier ages. Early-onset dementia and Alzheimer’s is something very real that a lot of people are experiencing, so we need to pivot and shift to make sure we can care for our folks here on the campus in any way, shape, or form.

“We’ve even got our home health dealing with folks with memory loss, or even end-stage Alzheimer’s in hospice,” she went on. “Unfortunately, we have seen more of it, across the board; I think healthcare in general has seen a lot more. And we want to be able to give our residents as fulfilled a life as possible.”

“We just wanted to make it this gorgeous, park-like environment. A lot of people like to walk, and and here they can be outside, and it gives them that sense of freedom.”

Many times, Halpern said, a senior-living facility is one of the first places family members contact when they suspect a memory issue.

“People reach out to us when they need help. And when do families need help? Often, it’s when they have a loved one who’s suffering from dementia and memory impairment, and they’ve tried to work with them at home. So we’ll work with them at home with our Spectrum Home Health Care, but then it can get to a point where you just can’t handle it. Maybe it’s the incontinence, maybe it’s the wandering and the risk of that, but we find that families are reaching out to us when they’re willing to give up their loved one. And it is a tough decision to place your loved one in a care setting.”

Even people with dementia who are able to live at home with family members can benefit from Wernick’s day programs, Halpern added.

“We were one of the first adult day health centers in Western Mass., back in the ’70s. We get a lot of people needing adult day care who have memory impairment and forgetfulness, and they are benefiting from being in social settings — and we offer social settings, be it in adult day care or assisted living, that helps people not feel isolated, and we help give them experiences that are failure-free.”

 

High-tech, Human Touch

Some of those experiences at Ruth’s House take place in a sensory room that allows residents to have experiences that reduce agitation and frustration, especially late in the day, a phenomenon known as sundowning.

“Some don’t want to be touched, or don’t like bright lights or loud sounds. They react differently to activities,” Schelb said, explaining that the sensory room is softly lit, soothing music often plays, and the room incorporates tactile technology, on touchscreens and activity panels, that stimulates in a calmer way.

“We downplay the aggravation for them. We teach staff how to recognize it and what to do, and it’s part of their care plan. We know what activities they like. And any new technology they have out there, we try to get and incorporate into our care plans and train staff to utilize them properly.”

Beyond its own programs, Ruth’s House works with families on their own communication, Schelb said.

“Sometimes we find families don’t know how to interact with their loved ones, causing frustrations. There’s a level of resentment because it really engulfs their whole life. We say, ‘let us help you; let us be the caregiver, and you go back to being the son or daughter or husband or wife.’ It’s really hard to do both.”

By focusing on the relationship and not the caregiving, families learn to move past the frustrations of life with Alzheimer’s or dementia, especially during the early stages when they’re just getting acclimated to the situation.

“They can get upset with mom or dad: ‘I just told you that; how do you not remember that?’ But they’re not purposefully forgetting; this is just part of the disease,” Schelb said, so family education and support groups are crucial — as is understanding when it’s time to seek the appropriate level of help. “Sometimes they can stay at home, and we can help. But sometimes they realize it’s just too much, and they realize they have options on our campus.”

It’s a campus that embraces not only person-centered care, Halpern said, but — at least in the Sosin Center — the ‘green house’ model of small-house care, which focuses on three goals: an authentic, home-like setting; meaningful life; and empowered staff.

“We recognize the environment is important to peoples’ well-being and how they feel,” she noted, adding that a second phase of what’s been called Project Transformation will bring the green-house model of renovations to the Leavitt Jewish Family Home as well — arguably a more important site for it, since it’s a long-term facility where residents will live the rest of their lives.

In short, Halpern said, JGS continues to look at ways to meet residents where they are.

“That affects how we care for people with dementia as well,” she added. “It’s part of our philosophy.”

Senior Planning

Understand the Difference, and Seek Help If It’s Needed

By Beth Cardillo

As Baby Boomers are getting older and representing the largest age group, the questions concerning dementia, as opposed to normal aging, continue to crop up in medical offices.

In the Greater Springfield area, 16.9% of residents over age 65 are living with a diagnosis of Alzheimer’s disease or other related dementia. The national average is 13.6%.

Someone develops Alzheimer’s disease every 68 seconds, with 5 million Americans affected, and the number expected to increase to 20 million by 2050.

Given these numbers, it’s understandable when loved ones become concerned when they notice a family member having memory issues. It’s also understandable when people start to wonder themselves if they a problem. So how does one know if it’s dementia or simply normal aging?

“Someone develops Alzheimer’s disease every 68 seconds, with 5 million Americans affected, and the number expected to increase to 20 million by 2050.”

Let’s discuss normal aging first, so you can have a sigh of relief. We all have occasional word-finding difficulties, but you can come up with the word given a bit of time. Not remembering someone’s name if you don’t see them often, or see them out of context, is normal. That is something we all do. Misplacing an item, but having the ability to retrace your steps and locate the item, is also normal. How many times do we all walk into a room and not remember why, then walk out and immediately remember, ‘oh yeah, I was getting the book I left on the couch’?

Rest assured, these are all normal signs of aging. Have any of you purchased ‘the tile’ so you can keep track of your keys, work keys, iPad, and whatever else you need? It can even help you find where you parked your car, which is extremely helpful in New York City, where there’s alternate parking every day.

What isn’t normal is having new problems finding words when speaking or writing (more than being on the tip of your tongue) and you just can’t bring them up. Or forgetting things more often, such as appointments, events, and your way around familiar places. Perhaps you can’t remember or keep up with conversations, books, movies, or newspapers. Are you stopping in the middle of the conversation because you can’t remember what was just said, or the thread of the conversation?

Also, are decisions harder to make? Is your judgment a bit skewed? Are friends and families asking if you are OK? Are you showing up to people’s homes or appointments on the wrong date? Is your mood and behavior a bit unstable or unpredictable? Are you withdrawing from social activities because you don’t want people to notice that you are having difficulty, but instead they notice you aren’t showing up?

These are symptoms of mild cognitive impairment, a precursor to a full dementia diagnosis.

There are more than 100 types of dementia. People are very reluctant to use the ‘A’ word. They quickly point out it’s not Alzheimer’s or they have just “a little bit of dementia.” The reality is that Alzheimer’s disease accounts for approximately 75% of all dementias. It could be vascular dementia, frontotemporal lobe dementia, Parkinson’s disease, or the 97 other types, and often they are concurrent. If you feel like this could be you, contact a neurologist, or a neuropsychologist, or the Alzheimer’s Assoc. at (413) 787-1113.

Today, there is no cure, but there are medications that can slow down the progression of the disease. Diet, exercise, genetics, and co-morbidities all play a part in the diagnosis, and it is said that those physiological changes could be forming in the brain 10 to 20 years before the actual symptoms start to show. There is no shame in asking for help if you feel you may have increased symptoms or you suspect them in a loved one.

On a side note, worth mentioning is that COVID-19 has wreaked havoc with the senior population, and the virus could be a new type of dementia. It has many side effects consistent with dementia if the virus has traveled to the brain. People are experiencing physiological and neurological changes within the brain, causing confusion, seizures, emotional dysregulation, and strokes that are having long-term effects.

Beth Cardillo, M.Ed., LSW, CDP is a licensed social worker, certified dementia practitioner, and executive director of Armbrook Village, and has worked in the dementia field for more than 20 years. Previous to working with dementia, she opened the nation’s first state-funded traumatic brain injury program in Westfield. She was named Western New England Social Worker of the Year in 2016, and was the 2019 Friends of the Alzheimer’s Assoc. Honoree of the Year; [email protected]; www.armbrookvillage.com

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]

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]

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