Joyce Simard began her career as a dementia care specialist almost unwittingly nearly four decades ago.
She had logged many early years as what she calls “a real social worker” when it hit hard that the usual rules and regulations care facilities cling to simply don’t work for residents who have Alzheimer’s disease or other forms of dementia. “Back then, we didn’t think about lowering the doses of anti-psychotics to help improve their quality of life and help cuts the risks of falling,” she says.
And back then, there were very few institutions ready or able to move from a “medical model” to a “comfort model,” offering alternative treatments for people with dementia.
But Simard couldn’t help but notice that by design or necessity, there are huge gaps in the time that activities are offered to residents in most assisted living facilities and nursing homes. “When residents are not engaged, that’s when they fall or act up,” she says.
Simard’s idea for revolutionizing care for people with dementia stemmed from the very simple idea of filling those gaps in time. She developed three programs to improve the quality of life for people in various stages of dementia, now in place in facilities throughout the United States and Canada, as well as Australia, Iceland, Scotland, and England — and the demand for them continues to grow.
The Memory Enhancement Program is especially for assisted living residents with mild cognitive impairment or the early stages of Alzheimer’s disease or other form of dementia, as well as those suffering from depression or having a hard time adjusting to life inside the facility.
Days are packed with a variety of activities, but the main target is one of the toughest things to change in institutions: the lockstep adherence to early bedtimes. “No one needs to go to bed at 6:30 or 7 unless they’re very ill,” she says.
In the Memory Enhancement Program, residents’ evening feeding times are staggered, freeing facility staff to help those who need assistance eating and changing into nightclothes. Those who finish are welcomed to come back to a “pajama party,” where they can participate in more games and conversation until one by one, they are ready for bed.
“How many residents in a nursing homes have a reason to get up every day?,” Simard asks rhetorically.
To remedy that, nursing home residents with the middle stages of dementia may join “The Club,” where they are given continuous activities, including snacks, exercise, and board and word games during all their waking hours. The moniker is meant to be more friendly and non-threatening than the usual activities directors’ entreaties to participate in sing-alongs and balloon volleyball.
She noted that facility staff and family members with good intentions most often pitch in and take over doing things for people who have dementia. But those in The Club start each day with a mission, such as sorting mixed-up playing cards, or helping to fold laundry,
“Most people with dementia are never asked to do anything. They never hear the words ‘thank you,’” Simard says.
The Namaste Care program, described in detail in The End-of-Life Namaste Care Program for People With Dementia, is designed to improve the quality of life for people who have advanced dementia or the end stage of an illness and can no longer participate in The Club. “Namaste” is a way of showing respect and inclusion when people greet one another. Derived from Sanskrit, Namaste loosely translates as “the divine in me recognizes the divine in you,” and the program mirrors that notion.
Its first component focuses on environment — a designated space free from other distractions made to look as comfortable and homelike as possible. Program participants are brought there daily, each one greeted in a special way—perhaps with a favored nickname or native language—as they enter the room. There is comfortable seating: easy chairs or reclining wheelchairs, each outfitted with a soft blanket personalized for each participant.
Simard says that one participating staff member told her: “When I walk into a Namaste room, I feel as if I’m being enveloped in a giant hug.”
In a drastic departure from the routine followed in most care facilities, food and drink are offered continuously instead of at set “feeding times.” And there is a special emphasis on hydration. “People are given as much to drink as they can; we are able to double or triple what residents were used to taking in,” says Simard, noting that through this increase alone, some facilities were able to end the scourge of urinary tract infections that had been plaguing residents.
There’s also a lot of attention to scents that might help orient residents — such as lilacs, lavender, or violets in the spring or cinnamon during the fall and winter months. Since the residents are mostly homebound, Namaste program workers are encouraged to “bring the outside in” whenever possible, such as a basket of grass clippings in summer.
The second component of Namaste Care focuses on “loving touch” of the residents: massaging hands and feet, slowly combing or brushing their hair, washing and moisturizing or shaving their faces.
“In most nursing homes and assisted living facilities, personal care goes away,” says Simard. “In Namaste Care, personal care is the practice, never a task. And we don’t wear rubber gloves when touching the residents unless it’s absolutely necessary for infection control.”
Here, too, familiar scents go a long way. Residents who ordinarily became agitated if groomed, for example, become calm and serene when they see and smell their old favorite Pond’s face cream or Old Spice aftershave.
Activities are necessarily more limited than in The Club, but are no less constant, and often aimed at evoking memories from the past through familiar movies, books, or music. Encouraging dance moves and engaging with pets can also help interest and energize some residents. “We keep forgetting that the giggle is still there,” says Simard.
So is the need and ability to grieve. She tells of some Namaste programs that encourage residents to mourn a resident’s death by placing a flag or a quilt over the body.
The Namaste Care program can be offered in assisted living communities or skilled nursing facilities, or as part of hospice care. “People with Alzheimer’s disease are the fastest growing group in hospice,” Simard says. “We can bring Namaste Care to their bedsides.”
Does it Work?
Lest her programs be written off as too “airy fairy,” Simard is a stickler for statistics in proving their efficacy. She says that facilities with the programs reported lower staff turnovers, and that their residents:
- Experienced a decreased number of falls
- Were able to reduce or eliminate anti-psychotic drugs
- Contracted fewer urinary tract infections, and
- Had a measurably improved quality of life.
But perhaps the best evidence is anecdotal: Several people said their family members told them “I love you” after months or even years of not communicating at all.