Until Bryan Le Blanc's 93-year-old mother died earlier this month, she had spent the last four years of her life in the Alzheimer's unit at Maryhaven Nursing & Rehabilitation Center in north suburban Glenview.
Over the last two years, Le Blanc saw changes in nearly every aspect of his mother's daily routine, including how she was given pain medication and the way she slept, dined and watched television. It was not uncommon for him to walk into the unit and see staffers giving his mother hand and foot massages or treating her with aromatherapy.
Since 2008, Maryhaven has been part of a study to rethink how care is given to residents with Alzheimer's and dementia. The study, which ends in April, advocates chucking many of the old inflexible ways of treating these residents in an effort to make the end-of-life process a more livable and meaningful experience.
This is especially important at a time when the population is graying and the number of Americans 65 and older with Alzheimer's is expected to reach 7.7 million in 2030, a more than 50 percent jump from the 5.1 million age 65 and up already affected, according to the Alzheimer's Association.
One of the study's authors, Jeannine Forrest, a palliative care expert with the association's Greater Illinois chapter, said the goal is to change the culture at nursing homes so that the focus is on comfort care rather than on aggressive treatments that offer minimal to no benefit.
"Alzheimer's is a terminal disease," said Forrest, who co-authored the study with colleague Dan Kuhn. "If your loved one has three months to live and wants to eat chocolate for dinner or sing 'Amazing Grace,' or wake up when they want, why not let them?
"We'd like to create ways so that we can make the advanced stages of dementia more comfortable and work with state regulators so that regulations aren't so rigid."
For example, she said, state rules may require that a nursing home resident with dementia get a certain amount of calories per day. But if that person's body is shutting down, it may become more difficult to meet the calorie demands by feeding on a traditional schedule and with a conventional diet.
"If comfort is the goal, then you don't have to put 1,200 calories of pureed food and yucky food supplements in front of a frail woman and expect her to eat that," Forrest said. "If she gets the calories by eating macaroni and cheese and chocolate pudding, so be it. If people aren't on a restrictive diet, giving choices and snacks as they are hungry prevents weight loss and diminishes aggressive behavior."
Forrest said that thinking in terms of comfort care requires a shift in philosophy for everyone — from state regulators to nursing home administrators, caregivers and family members.
During the study, health care staff at Maryhaven, Villa Scalabrini Nursing and Rehabilitation Center in Northlake, and Rainbow Hospice and Palliative Care in Park Ridge underwent a six-week training session and received other support. The idea for the study came from a visit to a nursing home in Phoenix, called the Beatitudes Campus, which implemented many of these changes about a decade ago and started getting positive outcomes.
Where the Chicago study deviates from Beatitudes is that at Maryhaven, family members such as Le Blanc also participated in the training.
"Often family members or some staffers will ask (a resident): 'Don't you remember I told you not to get out of your seat?'" said Forrest. "And the answer is, 'No, residents don't remember, they can't.'" (You can download a free comfort care guide for family members at alz.org/illinois)
The classes covered an array of topics including how to interact with loved ones exhibiting difficult or aggressive behavior; how to communicate on a sensory level (such as through music) versus a cognitive or cerebral level, which may not exist anymore for a dementia patient; and how to identify nonverbal cues for pain, since patients aren't always able to communicate what's bothering them.
In fact, pain management was a big part of the training. Staffers were taught to dispense pain medicines around-the-clock rather than on an as-needed basis, so that pain wouldn't have to a chance to spike. The staff also was trained to better recognize when aggressive behavior was linked to pain. That meant they were able to treat pain with analgesics such as Tylenol and Motrin rather than with psychotropic drugs.
Forrest said that since the study began, both nursing homes have seen a reduction in the use of psychotropic medicines, which can have pretty awful side effects.
Among other changes: Residents were bathed or showered based on their preference — with warm and colorful towels — so that the environment felt more like home. Caregivers often tried to anticipate restroom needs so that diapers could be used less frequently. Background noise, such as from intercom systems, was diminished because it tended to agitate residents. Televisions were turned on for short periods of times and not used as sitters.
Sara Szumski, chief administrator at Maryhaven, said that she, along with more than 80 percent of her 110-member staff, went through the training. Szumski said there was some pushback from workers who worried that the changes would require too much of their time. But they soon came around.
"We believed it was important to change the culture in the dementia unit and beyond because if you did things on the front end, you could prevent some of the things that come from unhappy or frustrated patients later," Szumski said.
"It took (Beatitudes) the nursing home in Phoenix several years to get them where they are. Our focus is to keep getting as far as we can."
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