Matthew is gone. He's passed away from Alzheimer's disease. But Matthew, a resident at a Veterans Health Administration nursing facility in Bennington, Vermont, was one of the lucky ones. He spent his last months in a program designed specifically for people with Alzheimer's who are approaching the end of life: Namaste Care.
In many long-term care facilities, residents in the final stages of dementia “typically are the last in the shuffle of a dementia unit,” says Kim Sciacca, a regional vice-president of Waltham, Massachusetts–based EPOCH Senior Living, which offers the multisensory Namaste Care program in most of its skilled nursing facilities. “There's a lot of programming going on for the wandering resident or for those in the earlier stages of the disease,” she notes. “This program specifically targets the people no longer able to engage.”
Multisensory programming for people with late-stage Alzheimer's is “an important step to enhance quality of life across the entire [Alzheimer's] disease continuum,” says Peter Reed, PhD, MPH, senior director of programs for the Alzheimer's Association, Chicago. “Even when people have progressed to the end of life, meaningful engagement remains possible through sensory-based activity and interaction,” even if the person is no longer able to verbalize the benefit, he explains.
The program also offers a tranquil place where families and caregivers often develop profound bonds with each other and with the resident. “The magic that is created in the Namaste Care room is quite moving to everyone involved,” says Joyce Simard, MSW, the Land O' Lakes, Florida–based creator of Namaste Care. “The staff and families are in awe of the sense of peace that shows on the faces of residents.”
When Matthew finally passed away, in a private room but in the company of his wife and Namaste Care staff who had come to know him so intimately, the veteran was covered with an American flag. Staff accompanied his stretcher through the facility to the hearse waiting outside and found themselves waving as it drove away.
The Namaste Care Program
Simard, a long-term care social worker for 25 years, has written a book, The End-of-Life Namaste Care Program for People with Dementia, due to be published in July by Health Professions Press, Baltimore (http://www.healthpropress.com). Namaste (pronounced Nah-Mah-STAY) is a Hindu term that means “to honor the spirit within.” The word embodies the program's guiding mission.
In Namaste Care, each day begins with the sounds of birds chirping or of music, usually classical or full orchestral love songs, softly played through the unit. Residents are gently dressed in comfortable clothing and groomed. Hearing aids are checked, glasses cleaned. Residents are assessed for pain.
After breakfast, the residents are brought to the Namaste Care room, where they're greeted with a hug or a touch of the hand, snuggled down into comfortable recliners, and tucked in with soft quilts. As swaddling does for infants, the tucking in helps residents feel secure.
The room is filled with soft music—overhead paging has been eliminated—and either the scent of lavender or, if appropriate, a seasonal scent (such as pine or spices for winter, flowers or the scent of rain for spring, and watermelon or cut grass in the summer) wafts through the air. The day is softly shaped by a series of “activities.” Residents' hair is gently brushed; their faces, hands, and feet are moisturized and massaged; their circulation is improved and muscles worked through passive range of motion exercises performed to music; nature videos are played; aromatherapy is provided by rubbing essential oils into a small area of the resident's skin (studies show that the scents of lavender, geranium, and marjoram have calming effects); and residents are brought out of themselves with puppet shows and multisensory stimulation.
Families are encouraged to take part in activities, such as tempting the resident's palate with a variety of easily swallowed delectables—lollipops, orange slices, crushed pineapple, smoothies, yogurt, juices, milk and buttermilk, and ginger ale. As Alzheimer's progresses, residents seem less able to feel hunger and thirst. “It makes [families'] visits easier when they feel they can do something for their loved one,” notes Simard.
At the end of the day, the Namaste caregiver says good-bye to each resident with a touch or a hug, and residents are returned to their rooms, where they may listen to their favorite music as they fall asleep.
At the end of life, the resident is moved to a private room to be alone with family during this transition. Families are prepared for the inevitable and cared for when the resident's time comes.
Setting aside a room and a nursing assistant specifically educated to care for the late-stage dementia resident, purchasing recliners, and finding quilts might seem a little challenging and potentially expensive, but staff at facilities that have the Namaste Care program say it pays off “in spades” in terms of family satisfaction and quality of life and care.