It's family night at the Hebrew Home at Riverdale, a senior care facility in Riverdale, NY. The recreation room is dotted with small clusters of seniors surrounded by loved ones.
But one adult daughter sits apart, tears pricking her eyes as she gazes across the room at an elderly woman who has just risen from her wheelchair to begin swaying in time with the gentle music being piped over the loudspeakers.
"That's not my mom, it can't be," the woman whispers. "I can't get her to walk more than three feet on her own at home. But here she is, dancing and happy."
For Deborah Messina, director of Hebrew Home's overnight care program for sleep disturbed seniors, it's just another night of changing the lives of caregivers and their elders. "It's so rewarding to see someone that elated and knowing you were a part of it," she says.
According to Messina, the night care program was created in response to one common caregiver lament: a debilitating lack of sleep.
"We had many family members looking at premature placement in a nursing home," she says. "When we asked them why they were considering skilled nursing as an option, the overwhelming response was that the family caregiver couldn't handle the nighttime behaviors of the person with dementia."
Sundowning seniors present challenge for caregivers
Caregivers of people with dementia often experience chronic sleep deprivation because their loved ones suffer from a condition known as sundowner's syndrome.
Sundowner's is so named because its primary trigger appears to be the onset of nighttime.
When darkness falls, the dementia demons of anxiety, anger, fear, hallucinations and paranoia come out for those suffering from cognitive impairment. A person in the throes of sundowner's syndrome is prone to aggressive behavior, shadowing, and wandering.
The Alzheimer's Association estimates that up to 25 percent of people with dementia suffer from sundowner's syndrome; though some studies indicate that this may be as high as 66 in dementia sufferers who live at home.
While taking care of an elderly adult is much different than taking care of a child, the disruptive sleep patterns of a senior with sundowner's can be similar to those of an infant who is reverse cycling, according to Messina.
She describes the behavior of Mary, who attends the overnight program seven nights a week. One night Mary may come in, do activities until midnight, sleep until two in the morning, then get back up and participate in more activities until falling asleep at 4:30 for another hour or so before being awoken to have breakfast and go home.
The next evening, Mary's cycle might be completely different. "It's this unpredictable, up and down cycle that family members can't handle and then function in their lives the next day," Messina says.
A not-so-typical night
To help local family caregivers cope and keep their loved ones at home as long as possible, Hebrew Home developed an overnight adult care program in 1998.
In the beginning, only two people showed up on a regular basis, according to Messina. But word gradually spread.
Now, between the hours of 7:00 pm and 7:00 am, dozens of dementia-stricken adults gather in brightly lit rooms where the curtains are drawn to shut out the anxiety-producing darkness.
Medical services, such as blood sugar and blood pressure monitoring, are provided for those who need it.
Dinner and snacks are served to participants as they engage in activities ranging from cooking groups, to exercise classes, to outings to view local displays of Christmas lights.
"Essentially, we take their night and turn it into day," says Messina.
The program is tiered, offering different types of events for different attendees, depending on how far their disease has progressed. The goal, according to Messina, is to provide participants with activities and tasks that engage and challenge them, but that provide positive, achievable outcomes.
For example, people with milder forms of dementia may take part in occupational therapy and yoga classes. They also sometimes splinter off into discussion groups. Those with more advanced impairment and those who can no longer speak undergo aroma and touch therapies designed to stimulate their senses and calm their minds.
The social aspects of the program provide an additional benefit to the participants, many of whom have few options for outside interaction. "An engaging social environment is difficult to achieve in a home setting," Messina says. Even dinner is designed to be a communal activity. "Being around others who are in a similar situation offers a level of peer socialization and support that many people with dementia can't get at home."
The benefits of adult night care
Family caregivers who are taking care of a dementia sufferer at home have woefully few options for coping with their erratic sleeping patterns. Providing a safe home environment for a person with Alzheimer's or other type of dementia can be difficult.
Some home care agencies do provide round-the-clock care options, but night care programs for people living at home are rare. Hebrew Home may be the only facility in the country that offers such a program.
So most caregivers do the best they can with what they have, overdosing on caffeine and sleeping with one eye open to make sure their loved one doesn't wander off in the middle of the night.
Until that day when lack of sleep combined with increasingly demanding days becomes too much, and a nursing home appears to be the only option.
For her part, Messina's goal is to get the word out about the benefits of overnight programs for people with dementia and their caregivers. "Night care is a hidden treasure that most people don't know about," she says. "It's not on the tip of every discharge planner's tongue."
If you don't have access to the "hidden treasure" of a night care program, there are some strategies you can use to cope with a loved one's sundowning behaviors:
- Stay calm. An agitated elder will likely mimic and feed off of the behavior of those around them. Keep your cool. Don't raise your voice and don't argue with your loved one.
- Stick to a schedule. A consistent nightly routine can be a calming influence on a senior who becomes anxious at night.
- Provide a peaceful environment. Draw the curtains so your loved one cannot see the darkness outside. Turn up the lights, play soothing music and keep the person away from a lot of activity.
For additional information on sundowner's syndrome, read: Managing Sundowner's Syndrome
For field-tested tips on how to handle sundowning behaviors, visit AgingCare's online Caregiver Forums: Dementia and Sundowning Q&A