Is it possible to live “the good life” with dementia?
Imagine suddenly coming home and finding that you can’t distinguish your microwave from the television or your husband from your father. You’re not sure what button does what. You don’t even know what a spoon is for. You begin to panic, but you’re not even sure why. Suddenly you hear a friendly voice and someone takes your hand, and your angst melts away. Alzheimer’s caregivers are called to be that friendly guide.
Memory care providers, like the rest of the senior living industry, have moved way from institutional, one-size-fits-all approach to care. Instead they have adopted “person centered care,” and adapt everything about the care to the person being cared for rather than attempting to make people with dementia conform to preconceived standards. It means going with the flow rather than trying to make the river flow uphill.
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We spoke with Lesley Yanak of Koelsch Senior Communities, a family owned chain of senior communities in the Western U.S. that specializes in memory care and has been operating since 1958. She related a good, real-life example of a person centered approach to dealing with difficult behaviors. During a visit to one of their communities she recalled passing through a hallway and witnessing a resident who was refusing to get dressed. Instead of the incident turning into a tantrum or battle of wills, the caregiver in the room began to sing one of the elderly resident’s favorite songs, and she quickly calmed down and agreed to get dressed.
“You will see moments like this at our community every day,” Yanak said.
The good life is found in moments and it involves giving and receiving kindness, and Alzheimer’s can’t take this kind of good life away. The benefit for residents extends beyond the moment, even if their memory doesn’t.
An article by Rebecca Mead in the New Yorker noted, “Research has shown that endorphins released during a pleasant experience have a salutary effect on a person with dementia even after the experience is forgotten.”
A person centered approach to care requires caregivers to know who they are caring for. The story Yanak related could not have happened if the caregiver did not know the resident. The caregiver had learned not only that the resident liked songs, but the particular song that would be most calming to her. To sing to the resident was an act of kindness and intimacy. A small, but beautiful gesture that connected with the resident in just the right way. In this moment the resident went from feeling upset and threatened to feeling comfortable and safe.
To help facilitate strategies like the one that the singing caregiver used, memory care providers instill the importance of knowing the residents well, and they emphasize it heavily when training new staff.
Tom Alaimo, Vice President of Life Guidance for Atria Senior Living, a large nationwide chain of senior living senior living communities, told me about the attitude they attempt to instill in staff to achieve the very personalized care they strive to provide. Alaimo said that staff are asked “to learn 100 things about every resident.” Alaimo clarified that by “staff” he meant everyone at the community, from the executive director to the chef to the caregivers.
Another technique that helps staff get to know residents was mentioned by several of the providers we spoke with in preparation for this story: The entryways to resident’s living spaces are decorated with mementos and symbols of the resident’s past life. For example, a proud retired police officer might have her badge on her studio door along with some photos of her in uniform — that sort of thing. This not only helps caregivers and other staff get to know the residents better — it also helps the residents find their rooms. (Try remembering a room-number with dementia.)
Tom Alaimo said that at Atria communities, staff are called on to bring their unique and authentic personalities and talents to their job. For example, a staff member with a gift for the piano might be encouraged to play a Mozart sonata for the residents, even if that staff member’s regular duties are completely unrelated to the activities program.
Alaimo said that just as all staff are expected to get to know memory care residents, they are also expected to engage them in impromptu activities whenever feasible. As an example, Alaimo said a hypothetical resident who was a devoted and proud homemaker might be encouraged to spend some time with the staff who are, say, folding laundry. Participating in a familiar activity or obtaining the pleasure of feeling useful, or just getting a little one-on-one attention can brighten resident’s days and bring a smile to their face.
We recently received this touching story from a speech pathologist (name witheld by request for privacy) who works with those with dementia at a nursing home in the Southeast. His story wonderfully illustrates the real human connection that staff can make with residents, and it’s evidence that people with Alzheimer’s and other types of dementia can indeed find their own good life:
“There is one woman I work with who lays in bed facing the window and stares. Everyone thinks she’s super depressed because she always lays in bed, but she is actually one of the happiest people I’ve ever met. The reason she lays in bed is because it gives her a better view of the clouds. She likes to lay there and watch for cartoons in the clouds. She sees the most lovely things up there: Her late husband’s smiling face, stallions speeding across the horizon, rabbits nibbling grass, flowers losing petals, children growing into adults… all things that move. She doesn’t see shapes in the clouds; she sees movies. Everyday when I come to see her, she’s laying in bed looking out the window and I ask what she’s thinking about. Today she said, ‘I was wondering where people go when they get lost in the Bermuda Triangle.’ Then she gave me a Werther’s Original Candy and we sat on the edge of her bed watching cartoons in the clouds. I saw an alligator chasing an elephant, a monkey throwing coconuts, and an apple fall from a tree.”
One large senior living provider, Emeritus Senior Living, calls their memory care program “Join Their Journey.” It is beautifully clear that this speech pathologist has joined the journey of the resident in the short he shared.
Activities are a core part of the senior living service, including at memory care communities. At Lifehouse Health Services senior communities,the Montessori method that was originally developed for the education of children has been successfully adapted to the memory care program. Activities are a core part of the program and activities for residents of all ability levels are available.
Elicia Van Ark, the Montessori Program Directory for Lifehouse told us, “The Montessori program allows for individual’s personalities to shine. Part of the Montessori program involves having activity baskets and stations available at all times. This allows for the staff and families to grab a basket and do an activity with a resident at any time. The instructions are on the front of the basket with three steps or less.”
We also spoke with Eva Arant, Memory Care Specialist at Koelsch Senior Communities, who described how their homes have at least two (and more often three) separate memory care activity groups. The groups are catered to the residents’ level of functioning. For example, the group that is higher functioning is composed of seniors who have early dementia. They may play cards while the group of residents of with mid-stage dementia is doing a sing along; residents with advanced dementia may engage in simple tactile activities like playing with Play-Doh. Arant was proud to tell us that each activity group has its own activity calendar and its own activities director.
Similarly, Koelsch communities and some other memory care providers offer multiple dining environments for memory care residents. Higher functioning residents who like restaurant style dining have one area where they can see into the kitchen, hear plates clinking and the grill sizzling, and are served by waitstaff. The second dining area is calmer and more peaceful, and it’s reserved for residents who could become over-stimulated in the restaurant dining area, who need assistance eating, or just prefer a more relaxed atmosphere.
Forty years ago memory care residents in robes might have been herded to the cafeteria at precise hours for meals, which most of us would probably call “slop.” Today memory care residents can dine in settings that resemble a bustling restaurant in a city center, or a quiet comfortable dining room. There are options depending on their preferences and needs, and the overall atmosphere is nothing like a the hospital or sanitarium type settings of decades past.
A main reason memory care residents will become agitated is because they have an instinct or need that they can’t communicate, let alone do something about. A caregiver who is familiar with a resident and his or her idiosyncrasies is much more likely to identify whatever issue might be troubling a resident at any given time.
In Rebecca Mead’s New Yorker article (mentioned and linked to above) she relates the story of an agitated resident at a memory care home in Arizona. The source of his agitation mystified medical staff until one caregiver was finally able to breakthrough to him and learned that he was in severe pain. When he was given appropriate pain medicine his agitation went away.
If it hadn’t been for the attentiveness of one staff member, it’s quite likely the resident would have been prescribed sedatives or anti-psychotics to inhibit his troublesome behavior instead of the pain medications that proved so beneficial.
Rather than imposing society’s idea or an institution’s idea of how to care for someone with dementia, the 21st century approach has providers learning to give care from those who they are caring for. Often the more modern, person-centered approach towards care is more permissive.
For example, traditionally memory care providers have awoken all the residents at the same time each and attempted to keep them on a standard routine that did not vary much for residents. Rules and standardization were embraced formerly because they seemed to provide order to the chaos that is a dormitory full of residents with Alzheimer’s disease and other types of dementia. On the other hand an advocate of a more permissive approach to Alzheimer’s care might say, “Let the residents sleep when they want, and rise naturally according to their own rhythms.” But, much like the solution to a Zen riddle, the permissive or restrictive dichotomy is false in the world of person-centered care.
I asked Evan DuBro, owner and founder of Our Family Homes, a chain of small memory care homes in central Ohio, about the sort of approach favored at his communities. “Our residents’ routine is flexible, but others do well with a strict schedule.”
Memory care providers have a lot of difficult decisions to make in their practical, day-to-day work. Balancing safety and freedom is among them. For example, falls are always a major concern for frail seniors, particularly in memory care. The 20th century mode of care had communities working to prevent falls at all costs, but this would mean restraining residents, either with a lap belt in a wheelchair or with medicines that would disincline residents from attempting to get up and move about. The attitude now tends to say, “We’ll do everything we can to provide a safe environment but residents must be given the freedom to fall.” In other words, it’s better to have some falls than residents who are restrained. Today, in mental health care as well as senior care, restraints are an option of last resort used in the most limited situations to prevent intentional self-harm or violence, not to keep people from falling and hurting themselves.
When we asked Evan DuBro of Our Family Home about this issue he said, “I believe it is important to have residents that are not restrained and have the right to move around. At Our Family Home because of our staffing ratios, we can assist residents when walking and are able to watch for when they are getting up. This approach is successful because of our staffing ratio and training. Falls will happen, but with our concept they are very rare.” DuBro’s observation that good staffing ratios (many caregivers) can prevent falls is a truism, and an adequate staffing ratio is essential to a well run memory care community.
Similarly, some providers have questioned the wisdom of following nutrition advice to a tee when they are dealing with residents who have all have an incurable terminal illness. For example, some providers have discovered the power of chocolate. The memory care community that Rebecca Mead profiled in her New Yorker article gave liberal doses of Hershey’s Kisses to residents, even sometimes diabetic residents who weren’t supposed to have a lot of sweets. Other providers have spoke to the power of chocolate in memory care as well. While chocolate might not be a health food, today’s thought is that it’s better than using powerful psychotropic drugs that can potentially cause multiple negative side-effects.
If you agree that “the good life” can be made of happiness, kindness and laughter, then the good life is certainly possible for residents of memory care communities. Even if you find the term “the good life” grandiose, we can call it a good life. By taking an approach to care that involves maximizing happiness and comfort while minimizing discomfort and pain, residents have the opportunity to enjoy wonderful moments and positive experiences with an overall degree of happiness you might not associate with Alzheimer’s patients.
While it’s difficult to gather quantifiable data about the benefits of good memory care because all of the residents have a terminal illness, Evan DuBro shared results of a survey of families of residents of Our Family Home communities. A strong majority reported that their loved ones were healthier and required less medication:
While these figures may not be strictly scientific, they are a good indication that memory care providers like Our Family Home and the others we discussed are doing their best at a difficult job.
The approaches we discussed are not limited to the providers we had an opportunity to interview. For example, Rita Altman the Vice President of Memory Care and Programming for Sunrise Senior Living, another large nationwide senior living provider, echoed sentiments discussed in this article in a recent email, noting Sunrise communities’ goal for memory care residents “is to create pleasant days…We understand that each person’s needs are unique, and all of the care that we provide is tailored for a resident’s distinct background and history, needs and preferences.”
My own grandmother lives at memory care at a community very much like those we outlined here, and I am always pleasantly surprised to see how well she seems despite her sometimes confused state. I can tell despite her confusion and increasingly frail 90 year-old body she still finds life worth living. She still laughs everyday. She still gets to eat her favorite food (vanilla ice cream). She also seems to enjoy chatting with the other elderly ladies who live with her. Compared to the alternatives, I think she has a very good life.
What experiences have you had with memory care? Share your stories with us in the comments below.