Nighttime wandering in dementia What protects them tonight, and what takes weeks

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Nighttime wandering is common in dementia: the Alzheimer's Association says six in 10 people living with dementia will wander at least once, and that risk-reduction steps cannot guarantee it stops. Door alarms and a search plan work tonight.

Two questions sit on top of each other here, and they have different answers. One is what keeps a parent from getting out the door tonight. The other is why the waking is happening at all. The first has a short, physical checklist behind it and can be done before bed. The second takes weeks of daytime changes and, in the Alzheimer's Association's own words, cannot be guaranteed to work.

The Association's wandering page carries the figure most families meet first: six in 10 people living with dementia will wander at least once, and many do so repeatedly. The Association says wandering can happen at any stage of the disease, which is worth knowing if a parent was diagnosed recently.

Alerting is the part that works tonight

Nothing in the reduce-the-risk section of this article helps at two in the morning on the day you read it. The alerting layer does. The Alzheimer's Association's home-preparation list is the place to start, and two of its items are specifically about being woken up by a door.

Install warning bells above doors, or use a monitoring device that signals when a door is opened. Place a pressure-sensitive mat in front of the door or at the person's bedside, which alerts you to movement before an exit is reached. MedlinePlus, in its dementia home-safety instructions, puts it more broadly: place alarms on all doors and windows that will sound if they are opened.

The Association's list also includes measures that slow an exit without confining anyone. Deadbolts go out of the line of sight, either high or low, on exterior doors. Door knobs get covered with cloth the same color as the door, or with safety covers. Doors themselves can be camouflaged, painted the same color as the walls or covered with removable curtains or screens. Black tape or paint across the floor makes a two-foot black threshold in front of the door, which the Association says may act as a visual stop barrier.

One line in that same list sets the boundary for all of it. The Association writes, in parentheses, that a person living with dementia should not be left unsupervised in new or changed surroundings, and never locked in at home. MedlinePlus is equally direct about beds: do not restrain a person with dementia when they are in bed. Where a hospital bed with guard rails is already in the home, MedlinePlus says putting the rails up may help keep the person from wandering at night, which is a different thing from a restraint.

Light, and the fall that happens on the way

A person who is up and moving in a dark hallway is exposed to a second risk before they ever reach a door. The National Institute on Aging notes that people with Alzheimer's are at greater risk of falling, because they often experience changes in depth perception. Its home-safety page recommends installing nightlights or automatic light sensors, and marking the edges of steps with brightly colored tape, and it puts poor lighting and loose stair railings in the immediate-danger class.

MedlinePlus adds the part that is easy to overdo. Where hallucinations are part of the picture, it asks for enough light in the bedroom that the person can see and knows where they are if they wake. The room should still be dark enough to promote sleep. Elsewhere it asks for lighting kept low, though not so low that there are shadows, and for mirrors to be taken down or covered. The reason for the mirrors sits on the NIA's home-safety page: mirror images may confuse a person with Alzheimer's. Our guide to fall prevention at home covers the high-risk zones and the home modification checklist in more detail.

Missing at night: the 15-minute rule and the search radius

The Alzheimer's Association's instruction for a missing person with dementia is to begin search-and-rescue efforts immediately, and to call 911 to file a missing person's report if the person is not found within 15 minutes. Tell the authorities that the person has dementia. That 15-minute figure is the Association's, and it is shorter than most families expect, which is the reason to know it before the night it matters.

Where to look first is also on that page. Many individuals who wander are found within 1.5 miles of where they disappeared, so the surrounding vicinity comes before the wider neighborhood. The Association suggests considering whether the person is right- or left-handed, because wandering patterns generally follow the direction of the dominant hand. Check local landscapes such as ponds, tree lines or fence lines, since many individuals are found within brush or brier, and search any area the person has wandered to before.

Three preparations make that search faster, and all of them happen on an ordinary afternoon. Keep a recent, close-up photo of the person on hand to give to police. Ask neighbors, friends and family to call if they see the person wandering, lost or dressed inappropriately. Write out a list of places the person might wander to, which the Association says often means past jobs, former homes, places of worship or a favorite restaurant.

MedlinePlus adds identification to the same preparation: have the person wear an ID bracelet or necklace with their name, address, and phone number on it, and include a caregiver's contact information if possible. It also suggests considering a GPS device, or a cell phone with a GPS locator embedded in it. The Alzheimer's Association's own suggestion is broader and worth asking about locally, which is to consider enrolling the person in a wandering response service. Its helpline runs 24 hours a day at 800.272.3900.

The reasons behind the 2 a.m. waking

The National Institute on Aging states plainly that Alzheimer's disease often affects a person's sleeping habits. It names four patterns:

• Sleeping a lot, or not enough.
• Waking up many times during the night.
• Napping a lot during the day.
• The restlessness and confusion as daylight fades that is called sundowning.

That is the whole of what the NIA claims about the mechanism on that page. It does not quantify how often each one appears.

The body clock, and what aging does to it separately

On its sleep and older adults page, the NIA describes the circadian rhythm as the body's clock, the thing that provides the timing for sleep, and names melatonin as a hormone the body releases when it gets dark that makes a person feel sleepy. The same page describes what aging alone does. Older adults tend to go to bed earlier and wake earlier, and the time spent in each type of sleep decreases. Sleep tends to be shorter and lighter, and waking more often during the night is part of the picture.

Dementia and ordinary aging are two separate stories arriving in the same household. A parent in their eighties with dementia is subject to both, and the NIA attributes them to different causes on different pages. A family watching more night waking is usually trying to work out whether the disease has moved on or whether an eighty-year-old is sleeping the way eighty-year-olds sleep. Neither NIA page answers that for a specific person, and a doctor can.

The physical checklist that comes first

Before any of the schedule work, the Alzheimer's Association asks caregivers to ensure all basic needs are met, including toileting, nutrition and hydration. A person who wakes with a full bladder and cannot find or name the bathroom will get up and move, and that movement looks identical from the hallway to movement with no cause at all.

The Association's one timed suggestion here is careful about its own limits. It says to consider reducing, but not eliminating, liquids up to two hours before bedtime, so the person does not have to find the bathroom during the night. The words "not eliminating" are the Association's, and they are there because dehydration in an older adult is its own problem. Where overnight bathroom trips are the trigger, our guide to managing incontinence has a section on the overnight version specifically.

Pain, illness and medications sit on the same checklist. The NIA lists illness, medications, mental health and pain as factors that can make it hard to get a good night's sleep in older adults. MedlinePlus gives the caregiver a clear trigger for a phone call: contact the person's provider if you think medicines may be the cause of changes in behavior, or if you think the person may not be safe at home.

Sundowning and night wandering are different problems

The two get used interchangeably and the sources do not treat them as one thing. The NIA describes sundowning as restlessness, agitation, irritability, and confusion as daylight begins to fade. MedlinePlus places it at the same hour, saying people with dementia often have certain problems when it gets dark at the end of the day and into the night, and lists increased confusion, anxiety and agitation, and difficulty getting to sleep and staying asleep.

Wandering is described differently by the Alzheimer's Association, as becoming lost or confused about location, and it is not tied to an hour. The overlap is real and the Association handles it by asking caregivers to identify the time of day the person is most likely to wander, adding that for those who experience sundowning this may start in the early evening. Our guide to sundowning includes a section on safety when wandering is part of the pattern.

Daytime choices shape the night

The NIA's list for caregivers of people with Alzheimer's is short and none of the items carry a number, which is itself informative. Help the person get exercise each day. Limit naps and dozing late in the day. Plan activities that use more energy early in the day, with bathing in the morning and the largest meal in the middle of the day as its two examples.

For the evening, the NIA asks for a quiet, peaceful mood to help the person relax: lights low, noise levels reduced, soothing music if the person enjoys it. Follow a regular schedule, going to sleep and getting up at the same time each day, including weekends and while traveling. Develop a relaxing bedtime routine with lowered lights, a cool temperature, and no electronic screens, and avoid alcohol and caffeine. Use nightlights in the bedroom, hall, and bathroom.

MedlinePlus covers the same ground from the behavior side and adds two things the NIA list does not. Calm activities at the end of the day work better when the person has been active during the day, because the activity is what makes them tired enough to sleep. And once the person is asleep, avoid loud noises and activity in the home at night, so they do not wake up again. Calmly reassuring and giving cues to orient the person is listed as helpful in the evening and closer to bedtime.

A family that wants the daytime version built out properly can work from our guide to creating a daily routine for a parent with dementia, which sets out morning, midday and evening anchors and closes on nighttime routines and sleep.

Melatonin and store-bought sleep aids

Melatonin is where a piece of common advice does not survive contact with the guideline behind it. It is the first thing most people reach for, and it is sold beside the vitamins. The National Center for Complementary and Integrative Health states that the 2015 guidelines by the American Academy of Sleep Medicine recommend against melatonin use by people with dementia, and that melatonin may stay active in older people longer than in younger people and cause daytime drowsiness.

NCCIH also notes that in the United States melatonin is regulated as a dietary supplement, which means the Food and Drug Administration regulates it less strictly than a prescription or an over-the-counter drug. That fact describes labeling and oversight. It is a reason to raise melatonin with the prescribing doctor before it gets bought in a pharmacy aisle at 11 p.m.

Store-bought sleep medicines carry the same warning from a different source. MedlinePlus says to always talk with the person's health care provider before giving them store-bought sleep medicines, and that many sleep aids can make confusion worse. On its own sleep page for older adults, the NIA says sleep medicines may help in the short term, but they carry risks and should not be used long term.

What the NIA does recommend is the conversation itself. If sleep problems continue to be a challenge, talk with a health care provider, who may be able to identify possible causes and suggest solutions, including a medical condition or a medication that is causing the sleep problem. Bringing a written record of the pattern to that appointment is our own suggestion, not the NIA's. The NIA does suggest keeping a sleep diary for a couple of weeks when an older adult has trouble sleeping, and the same habit gives a doctor something concrete to read.

For where sleep changes sit in the longer arc of the disease, our guide to Alzheimer's disease stage by stage covers the progression.

Caregiver sleep is part of the safety plan

The NIA makes the connection explicitly on the same page as its caregiver tips: when a person with Alzheimer's has sleep problems, it can also affect the sleep their caregiver gets, and both need restful sleep. On its sleep page for older adults, the NIA lists what a lack of quality sleep can lead to in that group, and the list includes problems with memory, negative feelings, more stress in relationships, and an increased risk of falls or accidents.

The fall-and-accident risk is the item that connects back to the top of this article. A caregiver navigating the same dark hallway on four hours of sleep is a second person at risk in it. The NIA also notes that insomnia is the most common sleep problem in adults age 60 and older, which describes a large share of the people caring for a parent with dementia.

Respite care is the practical lever, and the NIA defines it as short-term relief for primary caregivers, lasting anywhere from a few hours to several weeks at a time, delivered at home, in a health care facility, or at an adult day care center. Its search tool is the ARCH National Respite Locator Service, which covers state-sponsored programs, adult day care centers, and services for veterans. The Eldercare Locator, at 800-677-1116, is the other entry point.

The cost picture is specific, so here it is close to the NIA's own wording. The NIA says that for a person receiving hospice care, Medicare will cover most of the cost for up to five consecutive days of respite care in a hospital or skilled nursing facility. Medicaid also may provide payment assistance. Most private health insurance plans do not cover the costs of respite care, and some long-term care insurance plans may have coverage for this service. Anything not covered by insurance or a government program is paid by the family, and the answer to whether a specific plan covers it comes from the plan, not from a general page like this one.

The rest of the NIA's caregiver list is unglamorous and it says so by its own plainness:

• Ask for help when you need it. On its respite page the NIA adds a realistic note: be prepared for some people to say no, and try not to take it personally.
• Take breaks each day, join a caregiver support group, and keep up with hobbies and interests.
• See your doctor on a regular basis. The NIA frames the whole list as something that may help keep a caregiver from becoming ill or depressed.

For the caregiver's own sleep, the NIA's general tips apply:

• A regular schedule, and a bedtime routine.
• A room that is not too hot or cold.
• Regular exercise, but not within three hours of bedtime.
• No napping in the late afternoon or evening.
• No large meals within two to three hours of bedtime.

Its ADEAR Center answers questions by phone at 800-438-4380.