Sundowning and Wandering: Prevention and Response in Dementia Care

Late afternoon can turn a calm person into someone frightened and restless. At any hour, a person with dementia can walk out of a door, sure that they are going home or to work. Sundowning (more confusion and agitation late in the day) and wandering often go together, and both are easier to prevent than to fix. Wandering is also one of the most dangerous things that can happen in dementia care. The Alzheimer's Association says that six in 10 people living with dementia will wander at least once, and many do so repeatedly. This guide assumes you know what these are. It covers how to plan around them, what to do in the moment and what to do in the first 15 minutes when someone is missing. You follow the care plan, and you tell the nurse what you see.

What You Will Be Able to Do

• Plan a day that lowers the risk of late-day distress.
• Choose activities that fit the person's ability.
• Respond to sundowning as it happens.
• Spot the warning signs of wandering.
• Make exits safer without locking a person in.
• Follow the right steps when someone is missing.

Sundowning Starts in the Morning

Nobody knows exactly why sundowning happens. It may come from the disease changing the body's internal clock, along with tiredness and low light. In practice, what happens at 5 p.m. depends a lot on what happened at 9 a.m. A person who dozed all day in a dim room, skipped lunch and was bathed at 4 p.m. has very little left.

The Alzheimer's Association lists these causes:

• Being worn out at the end of the day.
• A new or confusing place.
• An upset body clock, so that the person is tired by day and awake at night.
• Low light and shadows.
• Stress from people nearby.
• Dreams that get mixed up with real life.
• Physical problems such as a urinary tract infection, incontinence, restless legs or sleep apnea.

A Day Plan That Helps

A steady routine reduces confusion and anxiety because the person's day becomes predictable, even if they cannot say what comes next. Keep caffeine to the morning, because afternoon caffeine disturbs sleep and can make sundowning worse. Also limit alcohol and nicotine.

Worked example. Mrs. Dale starts pacing and asking to leave at about 4:15 every day. You look at the pattern and find she gets a shower at 3:30, her daughter visits at 4 and the room gets dim. With the nurse's OK, you try these changes for a week:

• Shower moves to 10 a.m.
• Her daughter visits at 2 p.m.
• At 3:30 you turn the lights on, offer a snack and go to the bathroom with her.
• At 3:45 you start folding laundry together.

By the end of the week, the pacing is shorter and starts later. You report it, and the plan goes in the care plan.

Choosing Activities That Fit

Activities help most when they are familiar, enjoyable and matched to the person's ability. This keeps them feeling useful without setting them up to fail. A task that is too hard causes frustration, and one that feels childish can insult them. Look at the person's old job and hobbies.

Lower the difficulty as needed. A person who could follow a recipe last year may now do well just stirring. If they get frustrated, change to something easier. Doing it "right" is not the goal.

In the Moment: Responding to Sundowning

When late-day distress comes, comfort works better than logic.

1. Stay calm. Your voice sets the tone.
2. Check for needs. Toilet, pain, hunger, thirst and being too hot or cold.
3. Turn up the lights, and turn down the noise. Close the curtains at dusk so that windows do not reflect like mirrors.
4. Do not argue. If they say they have to go home, say "You want to go home. Tell me about home."
5. Offer something familiar. A snack, a drink, a song, photos or a simple task.
6. Let them walk. If they want to pace, walk with them, or make sure that the path is safe. Forcing someone to sit usually makes it worse.
7. Do not restrain anyone. Never hold a person back or tie them to a chair.

At night, if a person wakes up upset, stay calm and find out if they need something. Gently remind them what time it is, and reassure them. Report repeated night waking, because the person may have a medical reason for it, or a medicine may need to be looked at. The nurse and provider decide on that.

Warning: Report a sudden worsening right away, especially with fever, new sleepiness or a change in eating. Sundowning builds slowly and follows a pattern. A sudden change can be delirium, which is a medical problem.

Why People Wander

People who wander are often trying to do something. They may be looking for the bathroom, going to a job they retired from 20 years ago, or looking for "home," even while they are at home. Wandering can happen at any stage, and everyone with dementia is at risk.

Warning Signs

• Coming back from a walk or drive later than usual.
• Forgetting how to get to familiar places.
• Talking about going to work or doing an old duty.
• Trying to "go home" while at home.
• Restlessness, pacing or repeating movements.
• Trouble finding the bathroom or bedroom.
• Asking where past friends and family are.
• Acting busy, but not getting anything done.
• Looking lost in a new place, or getting anxious in crowds.

If you see these, report them. A person's risk can climb before anyone sees them near a door.

Lowering the Risk

Meet the need. Most prevention comes from good daily care: meaningful activity, exercise, food and drink, and regular toilet trips. If you know that someone tends to leave in the early evening, plan an activity for that time.

Reassure. If a person feels lost or abandoned, stay with them and say they are safe. If they try to leave, walk with them and steer them back. Do not block them with your body or grab them, because this can lead to a struggle.

Make the door less inviting. These ideas come from Alzheimer's Association guidance. Check with the nurse and the family first, and do not change a client's home on your own.

• Put deadbolts high or low, out of the line of sight.
• Use a door chime or a pressure mat at the bed or door to alert you.
• Cover doorknobs, or hide doors with a curtain or a matching color.
• Put a two-foot black mat or tape in front of the door, which can act as a visual stop for some people.
• Store coats, hats, purses and keys out of sight, because they can start the urge to leave.
• Label the doors to the bathroom and bedroom, so the person can find them.
• Use night lights.
• Make a safe, fenced outdoor area if you can.

Plan for trips. Never leave a person with dementia alone in a car. Avoid busy places such as malls, and do not leave them alone in a new place.

Warning: Never lock a person with dementia inside a home and leave. A fire or a fall would leave them trapped. If you are told to do this, tell your supervisor.

No plan guarantees that a person will not wander. Every person at risk should have an ID bracelet if the care team agrees, and the family should consider a wandering response service. Ask if a recent close-up photo is on file. Learn where the risks are nearby: water, busy roads, tree lines and bus stops. Also learn where the person might head: an old home, a past job, a place of worship.

When Someone Is Missing

Treat it as an emergency from the first minute. Do not wait to see if they come back.

In a facility, alert staff right away, using your facility's missing-resident code. Follow your role in the plan. Do not stop to fill out paperwork.

In a home, do this:

1. Start looking right away. Check the home first: closets, under beds, the garage, the car, the yard.
2. Call your agency or the family while you search. Do not leave the area of the home without telling someone.
3. Search the nearby area. Many people who wander are found within 1.5 miles of where they went missing.
4. Think about direction. Wandering often follows the person's dominant hand, so a right-handed person may head right.
5. Check the likely spots. Look near ponds, tree lines and fences, and in brush and briers. Many people are found in those places. Also check places they went before.
6. Call 911 if they are not found within 15 minutes. Say the words, "This person has dementia." Do not wait for permission.

Have these ready for the police: a recent photo, what they were wearing, their height and weight, medical needs, where they might go and when they were last seen. In many states the police can issue a public missing-person alert for people with dementia.

Worked example. At 2:10 you find that Mr. Lee's back door is open. He is not in the house or yard. You call the agency at 2:12 while you walk the block. You check the shed and the end of the street, which he likes. By 2:25 he is not found, so you call 911 and say he has dementia. You give his description, and you tell them about the creek behind the houses and the plant where he used to work.

When the Person Comes Back

The person may be cold, hurt, frightened, dehydrated or sunburned. They will not always tell you.

1. Stay calm and warm. Do not scold them or ask, "Why did you do that?"
2. Check for cuts, bruises and cold or wet skin, and offer a drink if it is safe for them.
3. Call the nurse. Report the time missing and where they were found.
4. Record the facts: when you last saw them, what was happening, which door they used and what you did.
5. Tell the nurse what might have started it. The care plan may need to change.

A person who has wandered once is likely to do it again.

Common Mistakes

Check Your Understanding

1. Mr. Hill naps most of the day, and is awake and pacing most of the night. What can you do, and what do you report?

Encourage daylight, activity and a walk in the morning, limit daytime naps and keep the bedtime routine steady. Report the sleep pattern to the nurse, because a medicine or a medical problem may be involved.

2. Every day at 5 p.m., a woman says she has to "go home and make dinner." What should you try?

Do not correct her. Say something like "You take good care of your family," and ask for help with a simple kitchen task, such as folding napkins. Move the task earlier the next day, before she starts to get restless.

3. A client who retired years ago has started putting on his coat in the morning and saying he is late for work. What should you do?

These are warning signs of wandering. Report them to the nurse, reassure him and offer him a task. Store coats out of sight if the plan allows, and ask about door alerts and ID.

4. You come back from the laundry room and your client is gone. You check the house and the yard. It has been 10 minutes. What now?

Call your agency or the family right away, and keep searching nearby, checking any water and bushes first. If she is not found by 15 minutes, call 911 and say that she has dementia.

Key Takeaways

• Sundowning starts with the whole day: morning light, activity, a real lunch and an early, calm evening.
• Choose familiar activities that fit what the person can do today.
• Respond to late-day distress with comfort, not logic, and let the person walk safely.
• Wandering has a purpose, so look for the need behind it.
• Do not physically block a person who wants to leave, and never lock anyone in and leave.
• If someone is missing, search at once and call 911 within 15 minutes.