What Stage of Dementia Is Sundowning? Behaviors by Stage

If you are asking what stage of dementia is sundowning, the short answer is the middle stage, and it can carry on into the later stages. Cleveland Clinic says sundown syndrome begins during the middle and later stages of Alzheimer’s disease and usually continues as long as its triggers continue. Every person is different, so treat the stages as a rough map, not a schedule.

Late-day confusion rarely arrives alone. Below, each common behavior is matched to the stage where it usually shows up, with the first thing worth trying and a link to our longer article on it.

One caution before the table. The Alzheimer’s Association says it may be difficult to place a person in a specific stage because stages may overlap, and each person may progress differently. The type of dementia matters too. Lewy body dementia, for example, often brings hallucinations and sleep problems much earlier than Alzheimer’s does. If you want the full picture of early, middle and late stage, start with our article on the stages of dementia.

Dementia behaviors by stage: a quick table

This table follows how the Alzheimer’s Association and the National Institute on Aging (NIA) describe Alzheimer’s. Other dementias can differ.

What stage of dementia is sundowning, and how long does it last?

Sundowning is increased confusion that people living with dementia may experience from dusk through the night, according to the Alzheimer’s Association. It is not a disease on its own. It is a set of behaviors that can include trouble sleeping, anxiety, agitation, hallucinations, pacing and disorientation. NIA describes it as restlessness, agitation, irritability and confusion that start or worsen in the late afternoon or early evening.

On stage, the sources line up. Cleveland Clinic says sundown syndrome begins during the middle and later stages of Alzheimer’s. NIA lists restlessness, agitation, anxiety, tearfulness and wandering, especially in the late afternoon or evening, among the signs of moderate Alzheimer’s. A research review in Frontiers in Medicine notes that more severe cognitive impairment has repeatedly been linked with sundowning.

How long does sundowning last? There are two answers.

• Each episode: the trouble tends to build as daylight fades and can stretch from late afternoon through the night. None of the sources we reviewed gives a fixed number of hours, and it varies from person to person and night to night.
• Over the course of the disease: Cleveland Clinic says sundowning usually continues as long as its triggers continue. The Alzheimer’s Association says the middle stage is typically the longest and can last for many years, so families may live with sundowning for a long stretch.

Triggers matter because some of them can be changed. Cleveland Clinic lists disrupted sleep-wake cycles, infection, dehydration, medication side effects, pain, tiredness, overstimulation from a busy day and low lighting.

What helps, according to the Alzheimer’s Association and NIA: keep regular times for waking, meals and bed; get daylight; plan bathing and appointments for the morning; serve a lighter dinner; limit caffeine and late naps; and keep the home well lit in the evening. Our full article on sundowning and dementia goes through each of these step by step.

What stage of dementia is hallucinations?

In Alzheimer’s disease, the Alzheimer’s Association says hallucinations are caused by changes in the brain, usually in the later stages. NIA lists hallucinations, delusions and paranoia among the signs of moderate Alzheimer’s. So for most families dealing with Alzheimer’s, hallucinations show up in the middle stage or later.

Lewy body dementia is different. NIA says visual hallucinations occur in most people with Lewy body dementia, often early in the disease, and are typically realistic and detailed, such as images of children or animals. The Alzheimer’s Association says hallucinations and misidentifying familiar people are significantly more frequent in early-stage dementia with Lewy bodies than in Alzheimer’s. If hallucinations come early, ask the doctor whether Lewy body dementia has been considered.

A sudden change is a red flag. The Alzheimer’s Association lists other causes of hallucinations, including kidney or bladder infections, dehydration, intense pain, eyesight or hearing problems and medications, and says a medical evaluation is important when hallucinations begin. Cleveland Clinic describes delirium as new or worsened confusion that develops over hours to days, can be triggered by a serious illness, infection or certain medicines, and lists dementia as a risk factor. If your loved one changes quickly, call the doctor.

If a hallucination is not upsetting or dangerous, the Alzheimer’s Association says there may be no need to step in. If it is frightening, stay calm, do not argue, and turn on lights to reduce shadows. More in our article on hallucinations and delusions in dementia.

What stage of dementia is wandering?

Wandering can happen at any stage of the disease, according to the Alzheimer’s Association, which also says six in 10 people living with dementia will wander at least once, and many do so repeatedly. NIA lists wandering and getting lost among the signs of mild Alzheimer’s. In the middle stage, the Alzheimer’s Association describes an increased tendency to wander and become lost, and says preventing wandering becomes a crucial part of care.

Warning signs include wanting to “go home” while already at home, talking about going to work, and pacing. For people who sundown, the Alzheimer’s Association says the risky time may start in the early evening, so planning activity and exercise for that window can help.

If your loved one goes missing, the Alzheimer’s Association advises starting the search right away, beginning nearby because many people who wander are found within 1.5 miles of where they disappeared. If the person is not found within 15 minutes, call 911 to file a missing person report and tell them the person has dementia. NIA also suggests ID or a medical bracelet, letting neighbors know, and keeping a recent photo on hand. See our wandering glossary entry for more.

What causes agitation in dementia patients?

NIA says agitation and aggression usually happen for a reason. Common causes it lists include pain, depression or stress; too little rest or sleep; constipation; a sudden change in a familiar place, routine or person; a feeling of loss, such as missing the freedom to drive; too much noise or too many people; being pushed to do something that has become very hard, like bathing; loneliness; and certain medications or drug interactions.

The Alzheimer’s Association adds moving to a new home, travel, hospital stays, houseguests and changes in who is providing care. It suggests checking for pain, hunger, thirst, a full bladder, tiredness, infections and skin irritation. In the late stage, it notes that anxiety, agitation, shouting and sleeping problems can all be signs of pain, because the person may no longer be able to tell you what hurts.

On stage: NIA includes increased anxiety or aggression among the signs of mild Alzheimer’s and says people may become agitated or aggressive as the disease gets worse. In the moment, speak calmly, do not argue, and offer a walk or music. If aggression puts anyone at risk, NIA says to keep a safe distance and, in an emergency, call 911 and explain that your loved one has dementia. Our article on agitated or aggressive dementia covers this in depth.

Repetitive questions, sleep changes and refusing care

Repetitive questions. NIA lists repeating questions among the signs of mild Alzheimer’s, and the Alzheimer’s Association names repeated questions as a communication change in the middle stage. The person may not remember asking, or may be seeking comfort. Answer kindly and try notes or a clock. Read more about repetitive questions in dementia.

Sleep changes. In the middle stage, the Alzheimer’s Association describes sleeping during the day and becoming restless at night. NIA lists increased sleeping in severe Alzheimer’s. In Lewy body dementia, NIA says REM sleep behavior disorder, where a person acts out dreams, can appear years before other symptoms. Our article on dementia sleep changes has practical fixes.

Refusing care. The Alzheimer’s Association describes refusing to bathe as one of the unexpected behaviors of the middle stage. Bathing can feel cold, embarrassing or frightening. Offer a choice of now or in 15 minutes, keep the room warm, and step back and try again later. See our article on care refusal in dementia.

When a behavior means call the doctor

Most behavior changes build slowly. Call your loved one’s doctor promptly if you notice any of these:

• Confusion, agitation or hallucinations that appear or get much worse over hours or days. This can point to an infection, such as a bladder infection, or to delirium.
• Hallucinations for the first time, especially early in the illness.
• A sudden change in how the person speaks or understands you. The Alzheimer’s Association says this could indicate other medical issues or medication side effects.
• New behavior after a medication change.
• Signs of pain, dehydration, constipation or a fever.
• Aggression that is getting worse or puts anyone at risk. In an emergency, call 911.
• A missing person: if not found within 15 minutes, call 911.

The Alzheimer’s Association says anyone with behavioral symptoms should have a thorough medical checkup, especially when symptoms appear suddenly. It recommends non-drug approaches first.

How a consistent companion helps

Most of the steps above come down to routine, daylight, a calm afternoon and someone keeping watch, which is hard to do alone. A familiar companion can keep the day on schedule, plan a walk or activity for the restless late-afternoon hours, supervise to lower the wandering risk, notice changes worth reporting to the doctor, and give you time to rest. Our dementia companion care is non-medical and provided by companions with dementia care experience across Florida.

Pricing is $35 an hour, minimum 25 hours a week, and live-in care starts from $375 a day. If you are not sure how much help you need, our guide on how many hours of care dementia needs can help you think it through, or call us at (689) 333-6079.

Sources

• Alzheimer’s Association. Stages of Alzheimer’s.
• Alzheimer’s Association. Sleep Issues and Sundowning.
• Alzheimer’s Association. Wandering.
• Alzheimer’s Association. Hallucinations.
• Alzheimer’s Association. Anxiety and Agitation.
• Alzheimer’s Association. Repetition.
• Alzheimer’s Association. Middle-Stage Caregiving.
• Alzheimer’s Association. Late-Stage Caregiving.
• Alzheimer’s Association. Bathing.
• Alzheimer’s Association. Dementia with Lewy Bodies.
• National Institute on Aging. What Are the Signs of Alzheimer’s Disease?
• National Institute on Aging. Coping With Agitation, Aggression, and Sundowning in Alzheimer’s Disease.
• National Institute on Aging. Coping With Alzheimer’s Behaviors: Wandering and Getting Lost.
• National Institute on Aging. What Is Lewy Body Dementia? Causes, Symptoms, and Treatments.
• Cleveland Clinic. Sundown Syndrome (Sundowning).
• Cleveland Clinic. Delirium.
• Canevelli M, Valletta M, Trebbastoni A, et al. Sundowning in Dementia: Clinical Relevance, Pathophysiological Determinants, and Therapeutic Approaches. Frontiers in Medicine, 2016.