Every afternoon at about 3:30, Jack went around closing all the curtains in his house. At first his wife opposed him. “Why are you doing that? It’s still light out!” But even if she stopped him and opened the curtains, as soon as her back was turned, he closed them again.
Jack, like many people with Alzheimer’s, finds darkness frightening. Because he dreads it, he prepares ahead of time to shut it out. His wife now accepts this new reality; when he starts closing curtains, she follows him around, turning on lights.
Jack is experiencing a common but poorly understood phenomenon known as “sundowning.” As I explained in Part 1 on this topic—and as many caregivers well know—sundowning is an increase in anxiety and distress that people with dementia of any kind can experience in the late afternoon or evening. Though its cause has not been pinned down, there are two, widely agreed-on contributors to its occurrence: disrupted circadian rhythms (discussed in Part 1) and environmental stress, which this blog will explore.
Some elements of the environment, which the rest of us hardly notice, unduly challenge people living with dementia. Things like darkness—not only the darkness outside that frightened Jack, but inside as well. Families should keep rooms well lit in the evening to eliminate dark corners and shadows.
Other environmental stresses overload the senses: a cluttered room, loud noises, too many people talking at once, TV, crowds or too much activity.
One theory attributes this sensitivity to overstimulation to a “progressively lowered stress threshold.” That is, the person with Alzheimer’s can’t tolerate as much stress as he or she once could. He may start the day relatively calm, but his environment is now so challenging to his impaired abilities that by late afternoon, he has had it. He’s tired and frustrated, but because of his cognitive problems, he may have a hard time processing what he’s feeling or saying what he needs. A sensitive and patient caregiver who listens very carefully may be able to piece together what those needs are, but if not, then in desperation the person with dementia may express his frustration with anger, agitation or aggression, or by crying or yelling.
Small children, with their immature nervous systems, can easily have a meltdown at the end of a day too long or too hectic for their limited capacities. A grownup with a damaged nervous system may have a meltdown for similar reasons.
As dementia advances, people’s tolerance for stress gradually decreases. It gets harder and harder for them to screen out extraneous noise, or to focus on one person if there are a dozen others milling around. It is essential to adapt their environment to their needs in order to reduce stress and try to keep anxiety and sundowning at bay.
When your care partner becomes anxious or angry—especially late in the day—observe her (or his) surroundings and review what happened to see if you can recognize what touched off her distress. Then try to avoid those triggers.
The last time I took my mother out to dinner, as soon as we drove into the parking lot and she saw the many cars parked there, she panicked. “We’re not going to go here, are we?” And so we didn’t. After that, I took her out for lunch—a time of day when she was more tranquil. And we stuck to smaller restaurants to avoid crowds.
Sundowning commonly happens in nursing homes when the shift changes in midafternoon. Some researchers hypothesize that residents take their cue from that and return to long-established habits. Seeing people leaving may prompt them to think it’s time to go home from work. And they try to leave too.
Evelyn lived in a secured dementia unit at an assisted-living residence. Every day she put on her coat at 3:00—the time she used to pick up her children from school—and tried frantically to open the door. The only way to calm her was to tell her that the children were safe: they had been picked up. She could then be distracted with, “Why don’t we have a cup of tea?”
Her insightful husband learned to forestall these episodes by arriving to visit her at 2:30 and bringing a thermos of tea and some scones with him.
There is a cruel catch-22 within the environmental-stress model of sundowning. If the person with dementia has had it by the late afternoon, so has the exhausted caregiver. And yet she (or he) is told she needs to remain calm to avoid making matters worse. It helps if someone else can take the sundowner for a quiet walk, or can put on some quiet music, to allow the caregiver to have some peace while she fixes dinner.
Another behavior linked to sundowning is restlessness. It can range from a vague uneasiness to compulsive motor activity such as furious pacing. As long as it’s done outdoors in a fenced-in area or indoors in adequate space, walking determinedly back and forth is relatively safe and harmless.
But don’t try to stop or interrupt these pacers. They may react violently: this seems to be an activity beyond the person’s control. It’s best to just let them wear themselves out.
It can go on for an hour or two and is hard to watch. Susan’s husband would begin to pace every night at 7:00. She would survey the path he took—the length of the living room—to be sure it was safe. Then she would take her knitting into the family room, where she couldn’t see her husband, and turn on one of her favorite TV shows. After two hours, she knew she’d find her husband slumped on the living room couch, calmed and exhausted and ready to go to bed.
For people living with Alzheimer’s or other dementias, environmental stresses aren’t just external things like loud noises or crowds. There are internal stressors as well–feelings like loneliness, boredom, fear and sadness—and at sundown, their ability to cope with these emotions is much lower.
Involving them in suitable activities—especially with other people or pets—is the best way to allay negative feelings. Their needs to feel useful, included and loved are often overlooked, especially when they can’t communicate them other than by acting out their frustrations. Like everyone else, they feel safer when they are with those who love them and are engaged in ways that make them feel good about themselves.
Richard reliably became belligerent in the late afternoon and frightened other residents in his dementia unit. One day a carpenter was installing some cabinets in the kitchen area. Richard hung around, watching him, and the carpenter asked Richard to sand some pieces of wood trim for him. Richard eagerly complied. For the next several days, he had a job and a purpose.
His belligerence disappeared. The director of the unit feared it would return once the carpenter had finished, so she bought a stack of unsanded wood trim and some sandpaper. She instructed Richard’s aide to bring them out every afternoon so he could continue to engage in a meaningful activity. Later, with his permission, the sanded trim was used to frame the artwork of other residents, a great source of pride for Richard.
If we regard sundowning symptoms as bad behavior—which, admittedly, is all too easy to do—we will respond in ways that add immeasurably to the person’s stress and make matters worse.
But if we recognize that people who are sundowning are in the grip of a real crisis and are expressing genuine needs, we will approach them differently. If we can accommodate them—as Jack’s wife eventually did in allowing him to close the curtains—we will soothe them. We’ll show them we care and let them know they aren’t alone on this hard journey.
When his wife became agitated at sundown, one man would say to her brightly, “Let’s dance!” And they did.
Call that distraction. Or call it magic. I call it love.
Maggie Sullivan has come to know Alzheimer’s intimately. She was caregiver and advocate during the eight years her mother lived with the disease. For the past 30 years, she has facilitated caregiver support groups for the Alzheimer’s Association, learning from the experience of more than 300 members of those groups. The opinions she expresses here are her own. Maggie is also a writer whose essays and articles have appeared in the New York Times and elsewhere.