Overnight dementia 'camp' allows caregivers rest

NEW YORK - Just after 10 p.m., when most people their age are going to sleep, a group of elderly folks suffering from dementia are just getting started, dancing and shaking tambourines and maracas in a raucous version of "La Bamba."

"It's a party," says an 81-year-old woman, among dozens of patients brought to a Bronx nursing home every night for a structured series of singalongs, crafts and therapy sessions that lasts until dawn.

The program, which appears to be rare, is kind of a "night camp" for dementia victims who don't sleep at night or tend to wake up agitated or become frightened or disoriented by the fall of darkness.

It's meant to provide care and activity -- lots of activity -- to fill the wee hours for people with Alzheimer's and similar diseases who live at home. And it's meant to provide their caregivers -- usually a son or daughter -- with a treasured night's sleep.

"Without this program, my father would be lost, and I would be crazy," said Robert Garcia, whose 82-year-old father, Felix, is in the program at the Hebrew Home at Riverdale called ElderServe at Night. "He doesn't sleep. At night he's wide awake, and he needs activity."

Garcia, who lives in a Bronx apartment with his wife and three of their children, said that before his father went into the program he would wake up in the night, loudly, and keep everyone else from sleeping.

"We would all wake up, and my daughter would ask, `Why is Grandpa screaming? Why is he so grumpy?"' Garcia said.

"Now he comes home in the morning, shows me his drawings, tells me what they did all night."

While many nursing homes offer temporary "respite care" so caregivers can catch up on sleep or go on vacation, the overnight-only program at the Hebrew Home fills a niche.

But costs are high, and such programs are rare. An official at the Alzheimer's Association said she knew of no other.

Daniel Reingold, president and CEO of the Hebrew Home, said the nonsectarian overnight program was started in 1998 because anecdotal studies found the biggest reason people gave for admitting loved ones into the nursing home was sleep deprivation of the caregiver.

"Someone with Alzheimer's can be getting up at 3 a.m., banging the pots and pans, thinking they were making dinner, even walking out of the house," Reingold said. "We heard stories of caregivers who were sleeping on mattresses across the front doorway so their loved one couldn't get out."

Most patients' care is covered by Medicaid, which pays the Hebrew Home $140 a night, plus $74 for transportation to and from home.

Dr. Robert Abrams, a geriatric psychiatrist at NewYork-Presbyterian Hospital, said sleep problems are typical in dementia and include the syndrome known as "sundowning," in which the fall of darkness causes confusion and fear. At the Hebrew Home, shades are kept closed.

Abrams says an overnight activity program like the Hebrew Home's is preferable to "fighting nature by insisting that participants try to sleep."

Ruth Drew, director of family services at the Alzheimer's Association in Chicago, said, "Many family members want to care for relatives with Alzheimer's at home, but in order to do that, the caregivers themselves have to remain healthy. You cannot stay healthy if you don't get a good night's sleep."

Many patients sleep a few hours at home during the day.

As the night passed at the Hebrew Home, other activities were offered to the 34 patients, who were in their 60s to 90s. Most moved on to a "cooking" program, where they were asked to peel and slice a banana, then add grapes and blueberries for a fruit salad.

During the slow process, the patients were asked, in English and Spanish, about colors and shapes. Several downed the fruit as it came their way, before salads could be compiled.

Other nighttime activities include walks through the nearly empty halls of the nursing home and "movie nights" with popcorn. Patients who are up to it are sometimes taken on field trips, for example to see the neighborhood's Christmas lights.

In quiet rooms, patients with more profound dementia were guided in simple puzzles like putting a peg in a hole. Others had sand or water poured over their hands to stimulate tactile sensations and perhaps reminiscences.

"They haven't been to the beach in years," said program director Deborah Messina. "Maybe it's a fond memory."

One darkened room was filled with recorded sounds of nature, a pleasant aroma and twinkly lights, all meant to provide gentle stimulation.

On occasion, a patient would nod off. There are "resting rooms" for patients who want to sleep, but half-hour naps in their chairs are more common.

"It's like a sleepover," Messina said. "It's a little bit of a party, and like a sleepover, when they come home in the morning, they haven't slept much."