Many Alzheimer's and dementia caregivers have prescriptive formulas for their charges. They enforce set schedules, use antipsychotic drugs for calming, and don't emphasize fun in their regimens. But three programs with unconventional approaches are seeing remarkable results in individuals.
Photo by João Canziani
Life Care Center of Nashoba Valley, Littleton, Mass.
Linda Valentine's 95-year-old mother, Laura Damuck, has late-stage Alzheimer's, but she still loves to pet Travis the llama when he comes into the memory support unit at this rural nursing home. "She'll smile, she'll laugh," says Valentine, "even if she doesn't recognize it's a llama."
It's not just Travis that Valentine, 65, appreciates — the docile creature lives on-site — but that "the center treats the whole person, not just the dementia," she says. Damuck's passion is dancing, and until she became impaired, she would often dance to big-band music with staff.
"Even if she can't express it in language, my mother can feel," says Valentine. "This place taps into emotions and encourages residents to express them."
When someone is upset or disruptive, rather than dispense a sedative, the staff at Life Care tries to find what triggered the behavior: a certain place or time of day? "We want to really know them, including what upsets them, what soothes them, and what will be evocative of good things in their past," says Executive Director Ellen Levinson.
One resident had been a librarian. When she became agitated, the staff would hand her a book. She'd relax instantly, flip through the pages, smell and caress it. And if a resident feels better cuddling a doll, that's just fine. "Some might see that as patronizing or infantilizing, but it's their reality," says Levinson.
ElderServe at Night, the Hebrew Home at Riverdale, Bronx, N.Y.
Nighttime can be grueling for caregivers. Dementia can wreak havoc on an individual's sleep cycle, leading to sleeplessness, night terrors, wandering or agitation.
"We heard the pleas of family caregivers who weren't sleeping at night and couldn't function the next day," says Deborah M. Messina, Hebrew Home's adult day and evening services director. "It was leading to family tension and premature nursing home placement."
To help, in 1998 the Hebrew Home at Riverdale began offering adult day services — at night. Those enrolled can socialize, putter in the garden, visit the circus, do yoga, paint, cook, listen to live music or get a mini-massage. They receive prescribed meds, plus physical, aroma- and light therapy. "If they want to walk through the halls at 3 a.m., staff members are there," says Messina.
"Thank God for this program. Otherwise, I would have had to put my mother in a nursing home," says Jahaira Zagarell, 38, a lawyer with a young child who lives 45 minutes from her mother, Carmen Febres. Ever since Febres had a stroke that led to vascular dementia in 1998 at age 54, she has been at ElderServe seven nights a week.
"I know she's socializing, which she doesn't have at home," says Zagarell. "She's in a clique. They reminisce about old times and tell dirty jokes." She also has a new boyfriend.
Beatitudes Campus, Phoenix
The focus at Beatitudes is on comfort. "We want to do for people what they would do for themselves if they could," says Tena Alonzo, director of research.
Part of being comfortable means determining individual schedules. If residents want a martini before dinner or a bath at 3 a.m., they get it. They sleep and eat when they want, and do only activities that interest them. A retired nurse, for example, might sit at the nurse's station and "help" by writing notes. "It's something she's done all her life and is meaningful," says Alonzo.
For the last several years, Maryjane DeBiasio and her husband, Louis, cared for his mother and father. But a stroke last July landed Gisa DeBiasio, 92, in a nursing facility. "It was a nightmare," says Maryjane. "Every time we turned around, they'd introduce a new drug." Within a month, "her personality changed from sweet and loving to out of control."
A physician suggested Beatitudes, where she was taken off the drugs. "The first thing the nurse said was, 'There are no rules here; we go with the flow,' " says Maryjane. Nurses now play the piano so Gisa can sing. She doesn't remember anyone or anything, says Maryjane, but knows every word to "Row, Row, Row Your Boat."
The staff and administrators "are caring, and that calms the residents and us," says Maryjane. "My mother-in-law is now happy, which gives us peace of mind beyond belief."