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As the Population Ages, Memory Care Continues to Evolve

By
Allison Baker
Healthcare News Special Coverage

Peace of Mind

Allison Baker

Allison Baker says the Atrium at Cardinal Drive aims to both give residents a high quality of life and take stress away from their loved ones.

It’s a moment so many families dread — until they come out on the other side.

“There’s a lot of anxiety. There’s a lot of guilt,” said Allison Baker, director of Community Relations at the Atrium at Cardinal Drive in Agawam, about the decision to move a loved one — usually a parent or spouse — into the assisted-living facility, which specializes in memory care.

“Families can feel like they might be giving up on their loved one by moving them to a setting like ours. And I think our challenge is to show that you’re not placing your loved one in a place just to live out the rest of their life. The point of our community is to give them the best quality of life.”

Cathy Ballini, executive director of Mason Wright Senior Living in Springfield, agreed.

“I always tell families, ‘nobody shops for this until they have to shop for this.’ And there’s a lot of guilt involved when you take parents out of their home. But you have to look at the bigger picture of what’s best for them.”

What often precedes that discussion, especially with individuals with Alzheimer’s disease or another dementia, is large quantities of “caregiver burnout,” Ballini added.

“When one or two people are caring for someone, there comes a time when something is sacrificed or suffers because you’re not providing this level of care. There’s only so much one person can do to keep someone entertained. There’s only so much the television can do.

Cathy Ballini

Cathy Ballini

“That time they have left should be quality time. You’re taking the business end of the relationship and putting that on us so that you can truly enjoy your time with your with your parent, with your brother, with your spouse.”

“Coming here, they’re building friendships and trust with us so their relationship with the parent becomes what it should be,” she went on. “That time they have left should be quality time. You’re taking the business end of the relationship and putting that on us so that you can truly enjoy your time with your with your parent, with your brother, with your spouse.”

But what makes it quality time, and how does memory care differ from traditional assisted living?

Since it opened 26 years ago, the Atrium has featured two buildings with 22 apartments each, both dedicated to a memory-care model.

“We don’t divide residents based on their care level or their cognitive functioning,” Baker said. “With residents with memory loss or cognitive impairment, huge crowds can be overwhelming or overstimulating, so limiting the number of people is better for a resident. That’s why we have two neighborhoods. They have the same amenities — they both have a courtyard, they both have dining rooms, they both have the atrium area, they both have living rooms and sitting-room areas; they’re identical to one another.”

The Atrium aims to provide a level of care often associated with skilled-nursing facilities — such as two-person transfer assistance, feeding assistance, medication administration, and total care with all aspects of daily living — but in a home-like, assisted-living environment, she added. “It’s a little bit different model than most other communities, but the hope is that our residents can remain here in their home through end of life and not have to move to another setting.”

Mason Wright, like many assisted-living residences, has a neighborhood, called Reflections, dedicated to memory care on its third floor. There, “the caregivers build consistency and trust with the same people,” Ballini said. “The caregivers who are helping them out of bed in the morning are doing activities throughout the day and are serving meals to them. The routine is very important.”

That daily routine includes an extensive roster of activities that actively engage the mind. Residents in Reflections are able to join the rest of the Mason Wright community for events like entertainers, baking sessions, and other activities that anyone can enjoy, but also engage in activities exclusive to their neighborhood that are aimed at preserving cognition.

Laura Lovoie

Laura Lavoie

“Some people contact me when they’re almost at the end of their rope and they just need somebody to say, ‘it’s OK. You’ve done a great job, but there needs to be more support around them 24/7, and you need to sleep.’”

At the Atrium, Baker said, “we’re often able to pique new interest with our residents or encourage them to try something that they haven’t done, like our art therapy program, for example. Residents who have never had an interest in art or painting may be willing to try, and we have seen them partake in that and do an amazing job.”

The Atrium infuses music into many activities, she added, from bringing in professional musicians to utilizing the baby grand pianos in both neighborhoods to playing instrumental music during mealtimes.

“In memory care, music is something that resonates with pretty much the entire population, all of our residents. Not necessarily the same song or same genre, but music is something they can relate to, regardless of what stage someone’s at with dementia, Alzheimer’s, or any cognitive impairment.”

 

Helping the Helpers

Laura Lavoie straddles both the world of family caregiving and residential senior-care facilities through her consulting business, Our Dementia Life, which offers assistance to families dealing with the challenges of memory care and workshops and training to assisted-living facilities and other settings.

With the latter, “it’s really focused on relationships between the staff member and the person living with dementia so that they can give them better care,” she explained, adding that facilities are mandated to offer just two hours per year of dementia training, which isn’t nearly enough. “So many people, not only in memory care but in assisted living and independent living, have dementia, and nobody’s taught how to actually work with these people in order to support them and let them be as autonomous as possible and let them feel as empowered as possible, while still asking for help.”

Meanwhile, Lavoie said, “I also deal with families, especially people who have their loved one in their home, who are really struggling with how they can understand what’s happening, what’s going on inside their brain, and how they can communicate better so that they can care for them better.”

Sometimes those conversations lead to a realization that the family simply can’t do it alone. “Some people contact me when they’re almost at the end of their rope and they just need somebody to say, ‘it’s OK. You’ve done a great job, but there needs to be more support around them 24/7, and you need to sleep.’”

Lavoie said she got into this work almost three decades ago. “My grandfather had dementia. He had a brain tumor, and then he developed dementia because of it and lived with us for a couple of years. And I watched my mom care for him 24/7 with zero training, and she did a beautiful job, but I remember the struggles that she had.”

With people living longer and the over-65 population growing, the need for her services is only growing.

“The mindset at many facilities needs to change and grow with it, and we need people to be well-trained to work with these people in order for them to have a really good quality of life,” she told BusinessWest. “Just because you get a dementia diagnosis does not mean you stop living. Some people have dementia for many years, and why do they have to be bad years?”

She emphasized that the crux of her beliefs lies in looking at the person living with dementia and discovering — and cultivating — what they still have, rather than focusing on what has been lost. “There is a mass culture change that has to happen as the Baby Boomers begin to explode into the various realms of dementias, and I hope to be a part of that even more than I am now.”

Baker also wants to cultivate what residents enjoy, which is why residents at the Atrium are encouraged not to spend the majority of their time in their apartments, but rather in the common areas, taking part in activities that range from trivia and conversations about history to physical activities like cornhole or bowling, as well as outings to local restaurants, parks, and community events.

“We’re trying to keep our residents as engaged as possible throughout the day,” she explained, “with the understanding that we know not every single resident enjoys every single activity that we offer, but the idea is to offer such a variety that there’s something that our residents will enjoy.”

 

Being the Problem Solver

Meanwhile, what families enjoy is spending time with their loved ones without the burden of constant caregiving, Baker said.

“I often talk with families and say, ‘our goal is to relieve you of all that caregiver stress.’ We want them to be able to come and visit their loved one and just be their daughter, son, niece, nephew, husband, wife, and not be worried about whether they got their medications on time, did they take a shower, did they get whatever level of personal care that they may need? We want our families to visit their loved ones and let us worry about all of those other pieces.

“Sometimes you can visibly see the stress relieved from somebody,” she went on. “They just look so much more relaxed once their loved one acclimates.”

Ballini said the need for quality memory care is only growing, and most facilities have waiting lists — and, as a result, many people end up in nursing homes before they need to because there’s not enough spots at facilities like Mason Wright that can meet their care needs in a home-like setting. “In this age of medicine, people are living longer, and there aren’t enough beds for people.”

For the families that can access the right care, however, the rewards can be great, especially if they’re burned out on caregiving at home.

“To see someone come in, not knowing what to do with all the stress, walking through, and they’re not sure it’s right for their loved one, but then seeing their loved one a month or two later, it’s so gratifying,” Ballini told BusinessWest. “It’s nice to be the problem solver. You’re taking care of the family as much as the actual resident.”

Lavoie finds her work satisfying as well, both working with families and helping to train facility staff on how to interact with people with dementia, showing them techniques and communication skills that enhance quality of life for everyone involved.

“It’s the best thing in the world. I get these ‘a-ha’ moments all the time, where even really good care workers in facilities that are really dedicated realize they can make this person feel like they can paint again, and they come to you crying, saying, ‘you should have seen her face.’ Or families say, ‘I can’t believe this this is all it took.’ It’s just the most gratifying thing ever, and I’m thrilled to be doing it, and I just want to give more people the opportunity to learn more.”

Reading the Signs

By Contributor
Senior Planning

Six Indications It Might Be Time for Memory Care

By Arbors Assisted Living

 

Memory care is a special kind of long-term care designed to meet the specific needs of people with Alzheimer’s and other forms of dementia or types of memory problems. Often housed within an assisted-living community, a memory-care program offers a more structured environment that comes with set schedules and routines to create a stress-free lifestyle, safety features to ensure the health of the residents, and programs designed to cultivate cognitive skills.

Five Symptoms of Dementia to Look Out For

1. Memory loss that disrupts daily life.

One of the most common signs of dementia involves trouble with short-term memory. From forgetting recently learned information to asking for the same information over and over, your aging loved one may be able to remember events that took place years ago, but not what they had for breakfast.

2. Difficulty handling complex tasks.

You might notice a subtle shift in your loved one’s ability to complete normal tasks, such as driving to a familiar location, managing a budget at work, or remembering the rules of a favorite game — or when they start having difficulty handling more complex tasks, such as balancing a checkbook.

3. New problems with words in speaking or writing.

Maybe your mom has always been a stellar conversationalist, and you notice that now she may have trouble following or joining a conversation. Or perhaps your dad struggles to find the right word or calls things by the wrong name.

4. Apathy and withdrawal or depression.

Changes in mood can be an indication that your loved one has dementia. Perhaps they avoid being social because of the changes in their brain. They may also have trouble keeping up with a favorite sports team or remembering how to complete a favorite hobby, so they may start to withdraw from things they previously enjoyed.

5. Increasing confusion and disorientation.

Someone in the early stages of dementia may often lose track of dates, seasons, and the passage of time. Confusion may arise as they can no longer remember faces, find the right words, or interact with people normally.

When to see a doctor:

If your aging loved one exhibits several of these signs, consult a doctor. A general practitioner will typically refer you to a neurologist who can examine your loved one’s physical and mental health to determine whether the symptoms result from dementia or another cognitive problem.

One of the goals of a memory-care community is to keep seniors with dementia engaged and active in a safe, home-like environment and to promote the highest quality of life by adapting the staff, environment, and daily routine to the needs of each individual.

Because of this, there is no downside to placing a loved one in a memory-care community too soon. However, there are many drawbacks to waiting too long.

So, how do you know when it’s the right time to consider moving your loved one to a specialized memory care community? The following questions may be helpful when determining if a move to memory care is a good option.

 

1. Is My Loved One Becoming Unsafe in Their Current Home?

As dementia progresses, your loved one will have a harder time functioning independently. Maybe you used to be able to help your mom by writing out a daily to-do list and a schedule of when she should take her medications. But now, she needs reminders to shower and help choosing appropriate clothes for the season.

Bathing, toileting, dressing, and other activities of daily living all come with risks. Safety should always be considered, and if there are any tasks that your loved one cannot perform safely on their own, assistance should be provided.

How often each day you worry about her, check on her, or make a call regarding her safety or whereabouts? If your loved one has fallen, had a driving accident, or suffered an unexplained injury, these are safety signs it’s time to consider moving your loved one to a memory-care community.

 

2. Is the Health of My Loved One or My Health as a Caregiver at Risk?

Dementia will affect your loved one’s ability to remember to take prescribed medications at the right time or the right dosage, which can lead to serious health problems. For example, chronic health conditions such as COPD and heart disease may worsen rapidly if dementia interferes with your loved one’s ability to manage their treatment. You might also notice that your loved one starts to look different. Maybe your dad is losing weight because he forgets to eat or gaining weight because he forgets he’s eaten and eats again.

When you look in a mirror, you might notice that you are starting to look different, too. Caring for someone with dementia is mentally draining and physically exhausting. If the stress of caregiving is left unchecked, it can have an impact on your health, relationships, and state of mind, eventually leading to burnout.

Is dementia preventing your loved one from taking care of their health? Are you and your other family members exhausted? It’s important to be honest with yourself about your emotional and physical limits while caregiving. Sometimes placement in a memory-care community is best for both the caregiver and the loved one’s overall health and well-being.

 

3. Are My Loved One’s Care Needs Beyond My Physical Capabilities?

In the later stages of dementia, your loved one may require assistance getting in and out of bed and moving from the bed to a chair. Additionally, dementia physically damages the brain, which can affect your loved one’s personality and behavior.

Wandering, agitation, repetitive speech or actions, paranoia, and sleeplessness may pose many challenges for families and caregivers. However, it’s important to remember that these behaviors are often coping tactics for a person with deteriorating brain function.

Is your petite, 70-year-old mom trying to get your 180-pound dad to the bathroom two or three times each night? Is your dad’s aggression triggered by something — physical discomfort, being in an unfamiliar situation, poor communication — on a regular basis? If continuing to care for your loved one at home puts both of you in danger, that’s a telltale sign that it’s time for memory care.

 

4. Am I Becoming a Stressed, Irritable, and Impatient Caregiver?

Stress arousal is the first sign that you’re not getting the physical and emotional support you need as a caregiver. Maybe you’re frustrated or disappointed over your loved one’s deteriorating condition or lack of progress. It can be hard to accept that the quality of your care and effort have nothing to do with the actual health-related decline or mood of the care recipient. This frustration can lead to caregiver stress.

If you are so overwhelmed by taking care of someone else that you have neglected your own physical, mental, and emotional well-being, it will not be long before you are experiencing caregiver burnout. When you are burned out, it is tough to do anything, let alone look after someone else.

 

5. Am I Neglecting Work Responsibilities, My Family, and Myself?

You might be struggling to maintain a sense of purpose in working so hard to provide care, which leads to neglecting responsibilities, withdrawing socially from friends and family, and having much less energy than you once had.

Family caregivers often have to take time off, either paid or unpaid, while some have to reduce their work hours. Others leave the workforce entirely in order to provide full-time care for a loved one. Additionally, caregivers don’t have as much time to take care of themselves, and they can often feel cut off from the outside world. Social isolation leads to higher levels of both caregiver stress and depression.

“There is no downside to placing a loved one in a memory-care community too soon. However, there are many drawbacks to waiting too long.”

Are you feeling irritable or hopeless, struggling with emotional and physical exhaustion, or getting sick more often? Do you have heightened anxiety or trouble making care decisions? If your loved one’s need for care is wearing you out, it may be time to start considering your memory-care options.

 

6. Would the Structure and Social Interaction at a Memory-care Community Benefit My Loved One?

Somewhere in the middle and late stages of dementia, your loved one will no longer be able to drive, and communication with others will become increasingly difficult. Your loved one may lose track of their thoughts, be unable to follow conversations, and/or have trouble understanding what others are trying to communicate.

Maybe it’s become too challenging to take your mom out to eat, shop, or exercise because her behavior is unpredictable. Or perhaps your dad can no longer drive, so he rarely goes out and is restless and lonely.

Is dementia shrinking your loved one’s world? Memory-care programs are equipped to provide activities and stimulation — including trips and outings — that can keep your loved one engaged and active in a safe, homelike environment.

If you answered yes to any of these questions or if you have reached a point where you feel like you cannot fully meet the needs of a loved one struggling with memory impairment, it is time to start visiting memory-care communities, which offer specialized environments where your loved one can not only live, but even thrive. Plus, knowing that your loved one has trained, 24-hour care can help relieve the caregiving burden and give your family peace of mind.

Memory Screening Can Be an Important Early Step in Dementia

By Contributor
Healthcare News

Don’t Ignore the Signs

Like with any disease, Cheryl Moran said, early detection of Alzheimer’s can make a big difference.

That’s why the Atrium at Cardinal Drive in Agawam and Orchard Valley at Wilbraham, both Benchmark mind and memory-care communities, have been hosting a series of memory screenings at area senior centers.

“Over the past 25-plus years, we’ve seen that people and families affected by dementia often delay planning, which makes for a much more challenging situation later,” said Moran, executive director of the Atrium. “By offering this to the community, we want to help ease the burden.”

Alzheimer’s disease and dementia affects nearly 350,000 people in Massachusetts, and the numbers continue to grow.

Cheryl Moran

Cheryl Moran

“Over the past 25-plus years, we’ve seen that people and families affected by dementia often delay planning, which makes for a much more challenging situation later.”

Memory screenings, Moran noted, are appropriate for anyone concerned about memory loss or experiencing symptoms of dementia or who believes they are at risk due to family history. Screenings like the ones being offered at area senior center provide a safe, simple, face-to-face way to check a person’s memory, language, intellectual functions, and other thinking skills using a series of questions and tasks.

Screenings have already taken place at Wilbraham Senior Center and West Springfield Senior Center in April, and the next two are slated for Wednesday, May 17 from 10 a.m. to noon at Agawam Senior Center, 954 Main St.; and Wednesday, May 31 from noon to 2 p.m. at Palmer Senior Center, 1029 Central St. Attendees can register for either event by calling (413) 821-0605 for Agawam or (413) 283-2670 for Palmer.

A screening can indicate whether someone should consult with a medical provider in order to identify what is causing memory loss. If dementia is the cause, early diagnosis can help both individuals and their family members learn about the disease, set realistic expectations, and plan for their future together.

“If they are able to obtain a diagnosis for the cause of their dementia, it can help to better understand what the individual is struggling with and what to expect as the dementia progresses over time,” said Julie Waniewski, executive director of Armbrook Village in Westfield, which has a memory-care neighborhood called Compass. “There are also clinical drug trials that they can partake in to aid in research and hopefully find a cure one day.”

 

What to Look For

According to the Alzheimer’s Assoc., memory loss that disrupts daily life may be a symptom of Alzheimer’s or other dementia. The organization lists 10 signs in particular to keep an eye on:

1. Forgetting recently learned information. Similar signs include forgetting important dates or events, asking the same questions over and over, and increasingly needing to rely on memory aids (such as reminder notes or electronic devices) or family members for things they used to handle on their own.

Julie Waniewski

Julie Waniewski

“If they are able to obtain a diagnosis for the cause of their dementia, it can help to better understand what the individual is struggling with and what to expect as the dementia progresses over time.”

2. Challenges in planning or solving problems. Some people living with dementia may experience changes in their ability to develop and follow a plan or work with numbers. They may have trouble following a familiar recipe or keeping track of monthly bills. They may have difficulty concentrating and take much longer to do things than they did before.

3. Difficulty completing familiar tasks. People with Alzheimer’s often find it hard to complete daily tasks. Sometimes they may have trouble driving to a familiar location, organizing a grocery list, or remembering the rules of a favorite game.

4. Confusion with time or place. People living with Alzheimer’s can lose track of dates, seasons, and the passage of time. They may have trouble understanding something if it is not happening immediately. Sometimes they may forget where they are or how they got there.

5. Trouble understanding visual images and spatial relationships. For some people, having vision problems is a sign of Alzheimer’s. This may lead to difficulty with balance or trouble reading. They may also have problems judging distance and determining color or contrast, causing issues with driving.

6. New problems with words in speaking or writing. People living with Alzheimer’s may have trouble following or joining a conversation. They may stop in the middle of a conversation and have no idea how to continue, or they may repeat themselves. They may also struggle with vocabulary, have trouble naming a familiar object, or use the wrong name.

7. Misplacing things and losing the ability to retrace steps. A person living with Alzheimer’s disease may put things in unusual places. They may lose things and be unable to go back over their steps to find them again. He or she may accuse others of stealing, especially as the disease progresses.

8. Decreased or poor judgment. Individuals may experience changes in judgment or decision making. For example, they may use poor judgment when dealing with money or pay less attention to grooming or keeping themselves clean.

9. Withdrawal from work or social activities. A person living with Alzheimer’s disease may experience changes in the ability to hold or follow a conversation. As a result, he or she may withdraw from hobbies, social activities, or other engagements. They may have trouble keeping up with a favorite team or activity.

10. Changes in mood and personality. Individuals living with Alzheimer’s may experience mood and personality changes. They can become confused, suspicious, depressed, fearful, or anxious. They may be easily upset at home, with friends, or when out of their comfort zone.

“There are many warning signs of memory issues or early-stage dementia,” Waniewski said. “Sometimes a person is struggling to prepare meals, which leads to improper nutrition, or they are not taking their medications correctly, the house is unkept, appliances may not be working, or their personal hygiene is not what it used to be. They may also ask the same question repeatedly, which is a sign of short-term memory loss. They may lack interest in previously enjoyed activities or group gatherings, which is usually because they are afraid that others will start to notice that they are struggling cognitively.”

Other warning signs may include piles of unopened mail or shutoff notices, indicating that their executive functioning is declining and finances are becoming difficult to handle on their own, Waniewski added. “Also, their car may have new signs of damage, or they may have gotten lost driving, and the yard may be overgrown and not tended to.”

 

Next Steps

While not every symptom is a sign of dementia, the Alzheimer’s Assoc. stresses the importance of getting screened, as early detection matters.

“If you notice one or more signs in yourself or another person, it can be difficult to know what to do,” the organization notes. “It’s natural to feel uncertain or nervous about discussing these changes with others. Voicing worries about your own health might make them seem more ‘real.’ Or you may fear upsetting someone by sharing observations about changes in his or her abilities or behavior. However, these are significant health concerns that should be evaluated by a doctor, and it’s important to take action to figure out what’s going on.”

Early detection may also open doors to treatments that may provide some relief of symptoms and help maintain independence longer, as well as increase one’s chances of participating in clinical drug trials that help advance research. Waniewski noted that Armbrook Village and its parent company, Senior Living Residences, are affiliated with Boston University’s Alzheimer’s Disease Research Center, which offers clinical trials in which people can participate.

For Those Caring for Those with Dementia, Education, Understanding Are Keys

By
Healthcare News Special Coverage

Living in Their World

Beth Cardillo calls them ‘fiblets.’

These are things that are said to someone with dementia that … well, do not represent the whole truth, or even a portion of it, at least to the person making that statement.

But to that person suffering from Alzheimer’s or one of the many other forms of dementia, it is the truth as they see it in their world. “It’s not a lie,” she said of these fiblets. “It’s an OK thing to tell people with memory issues.”

She offered up an example.

“Let’s say someone’s husband has been dead for 20 years; she might say, ‘I’m not going out shopping, I’m waiting for my husband to get home,’” noted Cardillo. “A fiblet would be … ‘oh, he just called; his tooth is hurting him and he’s going to see a dentist. Why don’t you and I go out for a ride and go to the grocery store?’”

“You’re going to tell someone that their husband died over and over again, every day?” she went on, asking that question rhetorically before answering it poignantly. “I mean, why would I want to do that? It’s cruel.”

Indeed, and fiblets are a good example of how those caring for and simply around individuals with dementia regularly should try to live in their world, rather than constantly try to pull them into the ‘real’ world. It’s also an example of the kind of work that Cardillo has made into a career, or at the least the latter stages of one.

Beth Cardillo

Beth Cardillo

Her latest move comes as a part-time social worker for a unique program called Baystate House Calls. As that name suggests, it’s a program operated by Baystate Health that involves healthcare professionals making house calls to older adults. It includes a physician, nurse practitioner, nurse, social worker, and community health worker, team members who will visit individuals in their home to assess their needs and provide recommendations.

The initiative concentrates on what administrators call the 4Ms — ‘mobility,’ ‘what matters,’ ‘medication,’ and ‘mind.’

It focuses not only on those in need of help and services, but caregivers as well, said Cardillo, adding that her work, and that of her colleagues, takes them to every corner of Springfield. And while she is helping seniors and caregivers with a wide variety of issues from substance abuse to falls to depression, much of her work involves those with memory issues.

And, increasingly, it involves what is known as habilitation therapy (HT), a holistic approach to dementia care that focuses on the abilities that the person still has, rather than what they have lost, and can reduce difficult symptoms.

“It focuses on everything positive — it focuses on people’s strengths, not their weaknesses,” she said of HT, adding that it brings caregivers and patients closer together as they work on daily tasks, makes those suffering from dementia feel respected and valued, reduces stress among caregivers, and creates positive emotional experiences that bring comfort and happiness.

“The reality therapy is for us to learn to live in their reality, not for them to live in our reality of our world. That’s probably the biggest lesson there is.”

Cardillo was recognized by BusinessWest and its sister publication, HCN, with a Healthcare Heroes Award in 2021 in the category of Community Health for her work during her years as executive director at Armbrook Village in Westfield to create ‘dementia-friendly’ communities and help others better understand — and communicate with — those suffering from memory loss.

For this HCN Monthly Feature and its focus on Memory Care, we talked with her at length about the importance of understanding what is reality that for those with dementia — and enabling them to thrive, as much as possible, in that reality.

 

Reality Check

Cardillo told BusinessWest that, years ago, she and others involved with providing memory-care services would offer to those with dementia what was called, by some at least, ‘reality therapy.’

“We would say, ‘no, no, no, you’re wrong — today’s Thursday, or today’s this, and tomorrow is that,’ she said, correcting wrong statements and answers to questions whenever the need arose. “But what we’ve learned is that it doesn’t matter. The reality therapy is for us to learn to live in their reality, not for them to live in our reality of our world. That’s probably the biggest lesson there is.”

Helping others live in the reality of those with dementia is a big part of the work Cardillo has been involved with over the years, especially at Armbrook, but also now as a social worker. She said that to make this leap — and it is a leap for most — it begins with education and an understanding of the disease and how it impacts people.

It robs them of short-term memory and the ability to do certain things — from driving to cooking to reading. But it doesn’t, or shouldn’t, take from them the things that are important to them, and have been important throughout their lives, be it what they did for a living, or travel, music, pets, or a love of the movies.

Cardillo recalled the case of a long-retired college professor who had (and still has) a passion for the New York Times and carries it with her daily.

“Some days, it’s upside-down,” said Cardillo. “But it doesn’t matter; that was her identity. Those are they types of things you don’t want to change; you don’t want to correct people.”

Overall, she said it’s important to treat those with dementia with respect and to not embarrass them with ‘reality’ questions or constant corrections concerning what day it is and what members of the family are no longer alive.

“It doesn’t matter if they say it’s Tuesday and it’s really Sunday. It just doesn’t matter. So, we don’t want to correct people. Does it matter if Mr. Smith thinks it’s a different day? Is that going to change the world? No. If he thinks it’s Christmas tomorrow, that’s OK. Why take that joy away?”

“Just because you have Alzheimer’s doesn’t mean you’re stupid,” she explained. “It doesn’t mean you can’t read people’s emotions. “I know people who will say to family members, ‘what’s my name? What’s my name?’ Why are you saying that to them? It embarrasses them. They know you have a connection. Is it because you think that if they know your name, they’re having a good day and that makes you feel good?

“Because it doesn’t matter if they know your name,” she went on. “It doesn’t matter if they say it’s Tuesday and it’s really Sunday. It just doesn’t matter. So, we don’t want to correct people. Does it matter if Mr. Smith thinks it’s a different day? Is that going to change the world? No. If he thinks it’s Christmas tomorrow, that’s OK. Why take that joy away?”

She recalled the case of a woman who told her that she was pregnant at 66. Instead of correcting her, Cardillo said she simply told her, ‘if that’s true, you’re going to make history.’

“You laugh about it with her, because she tells me these wacky stories,” she went on. “Her parents have been dead, but she’ll say, ‘oh, my mother wants you to come over for dinner.’ “I’ll say, ‘oh, how is your mother? I like your mother; tell her I said hello.’

“Her husband, on the other hand, keeps saying, ‘your mother is dead!’” she continued. “We need to stop that because it doesn’t matter. She doesn’t remember and she doesn’t care, and in in her head, her mother is alive. That’s fine. Who does it hurt?”

Overall, she said it’s important to try to communicate with a positive spin, rather than a negative one.

Indeed, instead of telling someone with dementia that they are not supposed to be going outside, when they suggest that they want to do so, one should instead stay positive and suggest that this person can sit outside when the weather is better.

As she talked about those suffering from dementia and how those caring for them should approach daily conversation and activities, Cardillo said it is important to keep them engaged and to focus “on what they can do, not what they can’t do.”

This brings her back to the concept of habilitation therapy, which, she believes, has benefits, and many of them, for those living with memory loss, their caregivers, family, and friends.

“It’s important to keep people meaningfully busy and not just silly busy,” she told BusinessWest, adding there is a big difference between the two.

Elaborating, she said that television is not a good option.

“We don’t want to put people in front of a TV all day, because it’s … not good,” she said. “It doesn’t make them happy campers. It doesn’t mean that TV is bad, just not as a babysitter all day.”

Instead, such individuals should be involved in activities that speak to who they are, who they were professionally, and what interests them.

“It’s really important to know what people did in their work,” she explained, “because they still retain some of those skills, and it’s still a part of who they are as an identity. For those who were teachers, give them papers to correct; you come up with things that they can do.

“I had someone whose father was a retired electrician,” she went on. “He had a manual of electrical … something; it was bigger than the New York City phonebook. He looked through those pages every day. I don’t know if he knew what was in it — I sure didn’t — but that gave him comfort.”

And some form of comfort is what those caring for people with dementia should be trying to provide each day, she said, adding that this can be done through HT, emphasizing the positive, and, yes, focusing on what those with dementia can do, not what they can’t.

 

 

Bottom Line

Summing up what she tells those caring for people with dementia, Cardillo said it is simply that reality is in the eyes — and mind — of the beholder.

And if we really want to help those with this disease, we have to at least try to live in their world, rather than make them live in ours. It’s not an easy assignment, especially when one is asked the same questions over and over, day after day, but it’s the key to those on both sides of the equation being able to thrive.

Recognizing Dementia Is the First Step in Moving Forward

By Contributor
Beth Cardillo
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

JGS Lifecare Incorporates Memory Care into Entire Continuum of Services

By
Ruth’s House
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.”

Is It Dementia or Normal Aging?

By Contributor
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

Carol Constant

By
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]

Coalition Aims to Make Community More Dementia-friendly

By
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]

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