Sundowning: what to do when evenings fall apart

With sundowning, what to do in the moment comes down to lowering the pressure. Turn the lights up, turn the noise down, stop correcting her, and give her something calm to do with her hands or her mouth, like folding towels or eating a snack. Then look at the hours before. Many bad evenings are set up by a long afternoon nap, too little daylight or a day that wore her out, so changing the day is how you change the evening.

What sundowning looks like, and what time it starts

Sundowning is the name for confusion, restlessness and agitation that get worse as the light goes. The Alzheimer's Association describes it as increased confusion from dusk through the night. The National Institute on Aging says it starts or gets worse in the late afternoon or early evening.

There's no fixed hour. It follows the fading light and how tired she is, so one person's window opens at 3 p.m. and another's at dinner. It can look like pacing, asking the same question every two minutes, packing a bag, following you from room to room, accusing you of things, crying, or yelling. Some people see things in the shadows that aren't there.

Nobody knows the exact cause. The Alzheimer's Association lists several things that seem to feed it:

• She's worn out from a full day of trying to make sense of things.
• Her body clock is broken, so she's sleepy by day and awake at night.
• Low light makes shadows, and shadows get mistaken for people or animals.
• She picks up on your stress and frustration, even when she can't say so.
• A new or unfamiliar place, like a hospital or a relative's house, adds confusion.

Sundowning: what to do in the moment

It's 5:15. Your mom is at the front window again, sure that someone is coming to take the house. Work through these in order.

1. Check her body first. Is she hungry, thirsty, cold, in pain, or does she need the bathroom? The National Institute on Aging lists pain, constipation and too little sleep among the common causes of agitation. A full bladder can look exactly like fear.
2. Change the room. Lights on, curtains closed, TV off. The evening news is especially bad, because raised voices and sirens tell a confused brain that something is wrong.
3. Get lower and slower. Sit beside her instead of standing over her. Drop your voice and use short sentences.
4. Agree with the feeling, not the facts. You don't have to confirm that strangers are coming. You do have to take her fear seriously.
5. Give her hands a job. A warm mug, a basket of washcloths to fold, a photo album, a bowl of buttons to sort.
6. Offer food. A small snack and a drink can take the edge off fast.
7. If she's set on leaving, go with her. Walk to the mailbox together and come back in through a different door. Blocking the door usually makes it worse. The guide on when she wants to go home has more on this.

If she gets aggressive, step back and keep a safe distance until it passes. If anyone is in danger, call 911 and say she has dementia.

What to say when she's sundowning

Keep it short and warm. Say one line, then wait. Repeat the same line rather than finding new ones, because new words are more for her to process.

More lines that tend to work:

• When she's scared of something outside: "Let's check the doors together. There, all locked. Now come sit with me."
• When she's looking for her kids: "The kids are fine. Everyone's where they need to be tonight."
• When she needs to get to work or an appointment: "That's been taken care of. They said tomorrow is fine."
• When she won't sit down: "I could really use a hand with these towels. You always fold them neater than I do."
• When she's crying and can't say why: "That sounds hard. I've got you. Let's have some tea."

A few of those are what caregivers call therapeutic fibs. They aren't about tricking her. They meet her where her brain is at 5 p.m. The guide on what to say to someone with dementia covers when a fib is kind and when it isn't.

How to manage sundowners: plan the day for the evening

You can't schedule sundowning away, but you can make it shorter and milder. These come from the Alzheimer's Association, the National Institute on Aging and the Family Caregiver Alliance. Add one or two at a time and give each about a week.

1. Light early. Open the curtains as soon as she's up. Breakfast by a sunny window, or coffee on the porch.
2. Move every day. A walk, a trip to the store, sweeping the porch. Keep it moderate, because a day packed with activities wears her out and can make evenings worse.
3. Front-load the hard stuff. Doctor visits, outings, baths and visitors go in the morning or early afternoon.
4. Limit naps. One short nap earlier in the day is fine. Long naps and dozing in the chair late in the afternoon make it harder to sleep at night.
5. Cut caffeine and alcohol late in the day. That includes cola, iced tea and chocolate.
6. Make lunch the big meal. The Alzheimer's Association suggests a larger lunch and a lighter dinner.
7. Turn the lamps on before sunset and close the curtains at dusk, so the house never goes dim.
8. Keep the evening dull and the same every day. Same dinner time, same chair, same bedtime routine.
9. Ask her doctor whether any of her medicines should be taken at a different time of day.

Sundowning activities that help

The best late-day activities are familiar, use her hands, and are easy enough that she can't fail at them. If an activity frustrates her, it's adding to the problem.

• Folding laundry, matching socks, rolling a ball of yarn.
• Sorting things: silverware into a tray, coins, buttons, playing cards by color.
• A short walk outside before it gets dark.
• Music she loved when she was young, played softly.
• An old favorite movie or TV show she's seen many times.
• Looking at photos, or a magazine about something she used to love.
• A hand massage with lotion.
• Stirring a bowl, washing vegetables, setting the table.

Take Carol, whose mother started pacing and asking for her own long-dead mother around 4:30 every day. Carol moved the afternoon coffee to lunch, set out a basket of dish towels at 4, and put on the big band records her mom grew up with. Some evenings were still rough. But most nights, the pacing lasted 20 minutes instead of two hours.

When to call the doctor

Sundowning builds over months. A sudden change, over a few hours or a few days, is something else until proven otherwise. MedlinePlus explains that delirium starts suddenly and can be caused by infections such as a UTI, pneumonia or the flu, by medicines, or by dehydration. Several of those, like a UTI, can be treated, and her evenings may settle once they are.

Don't start a sleep aid on your own, including over-the-counter "PM" products. MedlinePlus warns that many sleep aids can make confusion worse. Medicine questions go to her doctor.

Your evenings count too

The Family Caregiver Alliance puts it plainly: the caregiver needs enough sleep. If you're the one on duty every evening and every night, you'll wear down, and short tempers at 6 p.m. are part of that. Try to hand off at least one evening a week to a sibling, a friend or a paid aide. If her nights are bad too, the guide on dementia wandering at night covers keeping her safe while you sleep.

The Alzheimer's Association Helpline, 1-800-272-3900, is free and answers around the clock. You can call at 6 p.m. in the middle of a bad evening and talk it through with someone who knows dementia.

Questions caregivers ask

What does sundowning mean?

It's the common name for confusion, anxiety and agitation that get worse late in the day and into the night in people with dementia. It's also called sundowner's syndrome. It isn't a separate disease. It's a pattern within dementia.

What to do when a patient is sundowning in a hospital or care home?

Tell the staff what you've learned at home: when it starts, what calms her, the music she likes, the snack that works. Ask them to keep her room well lit in the evening and her routine steady. Hospitals are unfamiliar and loud, which can make sundowning worse, so a familiar blanket or photo helps.

How do you improve sundowning over time?

Daytime changes do most of the work: light, activity, fewer naps, less caffeine and a steady routine. Give each change about a week. Expect better evenings, not perfect ones, and expect the pattern to shift as the disease changes.