Sundowning

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1. WHAT IS SUNDOWNING?

Surprisingly, that's not an easy question to answer. Sundowning is a descriptive term rather than a diagnosis. Different researchers have different definitions -- which has complicated attempts to study the symptom, determine what causes it, and find ways to treat it.

Broadly speaking, sundowning is a cyclical increase in agitation (which may include restlessness, confusion, disorientation, wandering, searching, escape behaviors, tapping or banging, vocalization, combativeness, and/or hallucinations) that takes place at roughly the same time every day. Despite its name, and the wide-spread belief that sundowning occurs in the late afternoon and early evening, studies have found that the peak of sundowning activity is more likely to occur in the early- to mid-afternoon (e.g., around 1:00pm), while in some patients, it may occur late at night. It may even peak in the early morning in a fairly high percentage of patients.

For those of you struggling to cope with sundowning -- whenever it peaks -- take heart: many researchers have reported that it tends to occur in the middle stages of dementia, and to disappear as the dementia progresses.


2. WHAT CAUSES SUNDOWNING?

Many researchers consider sundowning to be a type of agitation, called "spontaneous agitation", that is caused by two factors, i.e.:
(1) Confusion, over-stimulation, and fatigue during the day, which results in increased disorientation, restlessness, and insecurity at night. And
(2) Fear of the dark, perhaps because of the lack of familiar daytime noises and activity and the lack of visual cues. The loved one may not be able to see as well in the gathering dusk, and/or be disturbed by strange shadows or reflections in window glass.

Others consider it to be a type of sleep disturbance that is "characterized by nocturnal wandering and confusion". Sundowning and sleep disturbance may appear to be related to each other since a sleep disorder, such as sleep disordered breathing, can be associated with a daytime behavior disorder.

However, more recent studies have concluded that sundowning is a chronobiological phenomenon that is unrelated to sleep disturbances. It is thought to be caused by a disturbance in the normal circadian rhythms, i.e., the "internal clock". Human circadian rhythms are biological cycles of ~24 hours that include sleep/wake, body temperature, and melatonin secretion cycles. They are regulated, in large part, by the suprachiasmatic nucleus (SCN), a cluster of neurons in the anterior hypothalamus. The SCN deteriorates significantly in Alzheimer's disease, contributing to disruption of circadian rhythms.

Decreased exposure to bright light has been suggested as a factor that contributes to the disruption of the circadian clock in dementia patients. Bright light (≥2,000 lux) is one of the most powerful synchronizers of circadian rhythms and directly influences secretion of melatonin, sleep/wake patterns, and body temperature cycles. Young adults and healthy older people are, on average, exposed to one hour of bright light a day, whereas Alzheimer's patients living at home are exposed to only 30 minutes a day, and Alzheimer's patients living in nursing homes are typically exposed to little or no bright light above 2,000 lux and only 10-20 minutes a day to light above 1,000 lux. However, it should be noted that the circadian rhythm disturbances in frontotemporal dementia (FTD) patients differ significantly from those in Alzheimer's patients. For example, in one study, Alzheimer's patients showed increased nocturnal activity and a significant phase-delay in their rhythms of core-body temperature and activity compared with FTD patients (and controls); whereas the activity rhythm of FTD patients was highly fragmented and phase-advanced in comparison with controls and apparently uncoupled from the rhythm of core-body temperature. The implication is that environmental factors such as exposure to bright light could not have caused differences between the two groups of dementia patients, suggesting a neurobiological basis for the time-dependent changes in activity.

Some studies have found no clinical evidence for the existence of sundowning per se. Studies that monitored agitated behaviors throughout the 24-hour day have repeatedly found that roughly the same number of patients exhibited cyclical agitated behavior in the early morning as those exhibiting it in the late afternoon/early evening. One conclusion was that disruptive behaviors which occur in the evening simply are noticed and reported much more frequently because they have a greater impact on caregivers. By the end of the day, the caregivers (whether at home or in a nursing facility) are too tired and irritated to cope with the loved one's behaviors as easily and effectively as they could when they were fresh and rested, and are also likely to be distracted by shift changes, family returning home from work/school, and evening chores such as preparing/serving dinner. Although often noticed, the "sunrising" phenomenon has rarely been studied, in and of itself, since cyclical early morning agitation has been dismissed as a symptom of depression, which is often worse in the early morning. However, a study designed specifically to determine whether there is a correlation between "sunrising" and depression did not find one.


3. HOW COMMON IS SUNDOWNING?

Reports of sundowning in Alzheimer's patients are typically in the 10 - 25% range, but have been as low as 2.4% and as high as 66%. Not surprisingly, the prevalence that is reported depends on the definition of "sundowning" that is used, and the type of population involved in the study (e.g., the type and level of dementia and the environment in which the patients live).


4. WHAT CAN BE DONE TO MINIMIZE SUNDOWNING?

Conventional recommendations for treating sundowning behavior revolve around trying to establish "good sleep hygiene", a reflection of the widely-held belief that sundowning is a sleep disorder. However, there are a number of other approaches to consider, as well.


4.1. Is it really sundowning?

First, be sure that what you are observing actually is "sundowning". Is the behavior new and did it appear suddenly? Have the doctor check for infections (especially urinary tract infections, UTIs) and dehydration. Perhaps your loved one recently had a new stroke or was hurt in a fall. Flare-ups of chronic diseases such as diabetes or heart, liver, or kidney disease can also cause agitation or delirium.

Pain is undiagnosed or undertreated in a staggeringly high percentage of dementia patients, and is a major cause of agitation and sleeplessness. Could your loved one be suffering from arthritis, constipation, gastroesophageal reflux, or sitting all day in an uncomfortable position? Tools to help you evaluate whether your loved one is in pain can be found at the University of Alberta and AlzBrain websites:
http://www.painanddementia.ualberta.ca/
http://www.alzbrain.org/pdf/handouts/2049.%20MANAGEMENT%20OF%20PAIN%20IN%20PERSONS%20WITH%20DEMENTIA.pdf

Perhaps your loved one takes a medicine that would control some source of discomfort, and that is wearing off at the time when the "sundowning" behavior appears.

Conversely, a medicine might be causing the symptoms you're seeing. Medicines that are commonly prescribed for dementia patients often have side effects that negatively affect sleep and wakefulness, or cause agitation or discomfort. Aricept, for example, can cause dream disturbances and/or insomnia. Antidepressants (especially SSRIs) can induce or exacerbate periodic limb movements in sleep (PLMS). Atypical antipsychotics increase daytime fatigue and somnolence, and may induce restlessness or akathisia. Check any medicines that your loved one takes -- even those he has been taking for a long time -- for possible adverse effects. ( http://www.rxlist.com ) Also, consider the possibility of drug interactions that can exacerbate adverse effects or make one or both of the drugs less effective. ( http://www.drugs.com/drug_interactions.php ) Talk with the doctor or pharmacist about the possibility that your loved one is on the wrong dose, possibly due to kidney or liver problems, or weight loss or gain.

Your loved one may be getting tired and irritable due to a sleep disorder. There are many different sleep disorders that may develop in dementia patients, such as sleep-disordered breathing, PLMS, restless legs syndrome (RLS), obstructive sleep apnea, nocturnal myoclonus, and parasomnias (e.g., REM sleep behavior disorder, RBD.) The treatments that are most likely to be helpful depend on the specific type(s) of sleep disturbances involved. For example, patients suffering from sleep apnea have difficulty breathing; depending on the cause of the apnea, treatment may be, e.g., a change in diet, simple devices to encourage sleeping in a different position, an oral appliance which prevents airway blockage, or a CPAP (continuous positive airway pressure) machine. RLS is caused by a functional disturbance in the dopaminergic system, and so the treatment of choice consists of dopaminergic drugs or dopamine agonists such as pergolide or pramipexole.

Depression is very common in dementia patients. Diurnal mood variation, a pattern of mood variability in which a person’s worst and best moods vary in a predictable fashion, is a symptom of major depression. Mood is most commonly worse in the morning and better in the early evening, but the opposite pattern occurs as well. As noted elsewhere, variability in mood associated with depression is not sundowning (or "sunrising"), and may be responsive to an antidepressant.

Specific interactions with other people might be the culprit. For example, a dementia patient in a nursing home might become upset by visitors they don't recognize or don't like, or by strangers who are visiting other residents of the facility. Because visiting hours are time-regulated, this reactive agitation might appear to have a temporal association.

Your loved one's behavior might even be due to something as simple as hunger and/or thirst. Try serving dinner earlier, or offering a snack or something to drink until dinner is ready.


4.2. Good sleep hygiene

Conventional wisdom for treating sundowning has been to try to help re-establish a "normal" sleeping pattern, coupled with taking steps to minimize factors that might trigger fear or confusion:
• Increase your loved one's daytime activities, particularly physical exercise, and discourage inactivity and napping during the day. If fatigue is exacerbating the sundowning, try a brief (one hour) nap, early afternoon or just before the usual sundowning time. If the loved one won't nap, an hour of quiet time -- sitting quietly and talking together, for example, or listening to soothing music -- may help.
• Since an Alzheimer's patient is usually better able to tolerate outings, activities and increased stimulus during the earlier part of the day, plan trips to the grocery store, involvement with kids, visits to day care and so forth during the morning.
• Even during the earlier part of the day, an Alzheimer’s patient can tolerate only so much stimulation and commotion. Take steps to eliminate over-stimulation such as noisy television or radio, boisterous children, quick movements, and many things going on at one time.
• Sometimes excessive stimulation cannot be avoided. Make sure that there is a private "time out" place where your loved one can retreat for peace and quiet. Make it off-limits to children and general traffic; even the caregiver should try not to intrude unless absolutely necessary.
• Don’t physically restrain the loved one. Let him pace where he is safe. A supervised walk outdoors can help reduce restlessness. Indoors, clear all clutter and obstacles (e.g., low coffee tables and foot stools) from your loved one’s walking paths. Keep knickknacks to a minimum and the tops of tables, shelves, and other surfaces as clear as possible. Mirrors and pictures may be interpreted as unfriendly visitors; complicated, noisy appliances can be frustrating. Avoid making changes once you have things simplified.
• Give diuretics and laxatives early in day.
• Plan for the afternoon hours to be quiet and calm, to allow your loved one to unwind and relax. However, structured, quiet activity is important. Perhaps take a stroll outdoors, play a simple card game, or sing favorite songs together.
• Early evening activities that are familiar from an earlier time in the person’s life may be helpful, for example, walking the dog, a pre-dinner drink, or assisting with preparing dinner or setting the table.
• Physical discomfort -- hunger, being wet or soiled, or feeling cold/hot -- can play a part in sundowning. Light snacking during the day can be helpful. Apples and other fruits can help replace lost energy; even a loved one who is pacing back and forth does not have an endless supply of energy.
• Turning on lights well before sunset and closing the curtains at dusk will minimize shadows and may help diminish confusion.
• Discourage drinking stimulants (e.g., caffeine) or smoking near bedtime.
• Set a quiet, peaceful mood in the evening to help the loved one relax. Keep the lights low, and try to reduce the noise levels, e.g., from television and radios. Some loved ones are comforted by soft toy animals, pets, hearing familiar tunes, or an opportunity to engage in a favorite pastime.
• Have a bedtime routine. Try to have the loved one go to bed at the same time each night. Have a routine for getting ready for bed, such as taking a bath and having some warm milk, a back rub, or perhaps reading out loud.
• Make sure the loved one gets enough rest at night. Provide a comfortable bed. Create a calm atmosphere for sleeping. Reduce noise and light. Stuffed animals or a pet may soothe the loved one and allow them to sleep. Soothing music may help, or a recording of ocean waves or a mountain stream, or even "white noise" from, e.g., a fan.
• Have the loved one use the toilet right before bedtime, to minimize the need for nighttime toileting. Place a commode next to the bed for nighttime urination. Walking to the bathroom in the middle of the night may wake the loved one up too much, making it difficult to get back to sleep.
• Close the curtains and leave night lights on in the bedroom, hall, and bathroom if the darkness is frightening or disorienting.

Most of these recommendations appear (to me) to be based on common sense. A few, however, might be somewhat controversial, as will be discussed later.

Such recommendations have rarely been studied in clinical trials. I did find one, called "NITE-AD" (McCurry et al 2005), which was focused primarily on sleep disturbances. At the end of six months, loved ones whose caregivers were trained in a combination of sleep hygiene, daily walking, and light exposure interventions were found to have fewer nighttime awakenings, less total time awake at night, and less depression. The researchers noted that, given the design of the study, it was impossible to determine whether an individual intervention or some combination of interventions had the greatest effect on the outcomes.

I found it curious that the paper did not present any data on "secondary outcomes" other than depression, such as disruptive behaviors -- even though the data was collected -- and ignored the worrisome (to me) observation that NITE-AD patients exhibited a trend toward more-rapid cognitive decline over time. Granted, the trial was very small and the data might have been skewed ... but that is true of all the data, not just the rates of cognitive decline.


4.3. Support a "normal" circadian rhythm

As sundowning is being established more firmly as a chronobiological phenomenon, measures intended to help re-establish a "normal" circadian rhythm are being suggested more often for treating it. These include:

- Designing ChEI therapy to support, rather than disrupt, the circadian rhythm

Deterioration of the brain's cholinergic system is a hallmark of Alzheimer's, with degeneration of cholinergic neurons in the basal forebrain being one of the first biochemical changes that is seen. The cholinergic system comprises the neurotransmitter acetylcholine, the enzyme cholinesterase (whose function is to destroy excess acetylcholine), and cholinergic receptors. The Alzheimer's brain does not produce adequate acetylcholine for optimum neurotransmission. Drugs such as Aricept/donepezil, Razadyne/galantamine, and Exelon/rivastigmine are cholinesterase inhibitors (ChEIs), i.e., they prevent the enzyme from destroying as much of the acetylcholine as usual, thereby effectively increasing its levels in the brain and increasing cholinergic activity.

The cholinergic system has a pronounced circadian rhythm upon which sleep, waking, and fundamental aspects of learning depend. For example, in general, the healthy brain has low levels of acetylcholine during slow-wave sleep, and high levels during wakefulness. ChEIs have the potential to either mitigate disease-induced disturbances of the cholinergic rhythm by raising acetylcholine levels (increasing cholinergic activity) during the day, or to exacerbate sleeplessness and agitation by preventing the normal fall in acetylcholine levels (and thereby interfering with the normally reduced cholinergic transmission) at night.

The ChEI drug that is used and the time of day at which it is given can determine whether the normal cholinergic transmission and rest-activity cycles are supported or undermined. For example, Aricept/donepezil has a very long half-life (70 hours) in the body. Since its concentration in the blood doesn't vary much over the course of a 24-hour day (once the loved one has reached steady state, i.e., has been taking a given dose of the drug for a couple of weeks), it maintains high levels of acetylcholine in the brain at night, even if the drug is given in the morning. Aricept therefore has the potential to disrupt sleep and trigger insomnia. Razadyne/galantamine, on the other hand, has a much shorter half-life (7 hours). The extended-release formulation administered in the morning, in particular, helps support the normal circadian cholinergic rhythm, maintaining higher levels of the drug in the blood (and thereby higher levels of acetylcholine in the brain) during the day and lower levels at night.

- Bright light therapy

Since exposure to light plays a major role in regulating the phase relationships among core body temperature, melatonin rhythm, and the circadian rest-activity cycle, bright light therapy is frequently suggested as one simple way to help treat sundowning.

There is evidence that bright light can be used to change the timing of circadian rhythms (the circadian "phase") or, when administered at certain times of the day, may increase the amplitude of circadian rhythms without necessarily affecting the phase. Some -- but not all -- studies have found that circadian rhythms in older adults are phase-advanced, that is, the rhythms are shifted to an abnormally early time, resulting in the adults falling asleep and waking up earlier than usual. Conversely, some Alzheimer's patients have phase-delayed activity, that is, sleep onset and morning rising are shifted to abnormally late times. Evening bright light has been shown to delay circadian rhythms, whereas early morning light has been shown to advance circadian rhythms. As a result, advanced rhythms, such as those seen in healthy older adults, might be beneficially delayed with exposure to evening light, whereas a phase delay such as that seen in Alzheimer's may be beneficially advanced with exposure to morning light.

Results from clinical studies on dementia patients, however, have been inconsistent -- quite possibly due to differences in the type of light that was used, the length of exposure, and the time of day the therapy was implemented. Some researchers have suggested that more consistent results might be obtained if only one type of dementia were included in a study, or if the studies did not focus on severely impaired institutionalized patients who are likely to have incurred more marked SCN degeneration. Women show different patterns of sleep and circadian physiology during aging than men, so perhaps the genders should be studied separately. Some researchers suspect that other factors are likely to have been involved, that were not detected due to lack of appropriate controls. One wonders whether more consistent results might have been seen if subjects were screened to eliminate dementia patients who suffer from sleep disorders and other common causes of agitation (e.g., pain), for example.

In any event, some of the largest and best-designed studies found no improvement in nighttime sleep or daytime alertness from bright light therapy, and/or no improvement in agitated behavior, and one study actually reported an increase in behavioral problems. (Note: bright light can contribute to eyestrain and headaches, and can cause glare and reflection off polished surfaces which, in turn, can cause confusion, agitation, and anger.)

- Melatonin supplements, alone and in combination with bright light therapy

As noted above, circadian rhythm disturbances have been linked to abnormalities in the SCN. Rhythmic nocturnal melatonin secretion from the pineal gland is directly generated by the circadian clock located in the SCN. Because several studies suggest that melatonin levels are either low or dysregulated in Alzheimer's, oral melatonin supplements have been proposed as a treatment for sundowning.

However, clinical trials on the use of melatonin for treating sundowning or sleep disorders have failed to show that the approach will be broadly beneficial for dementia patients. A recent multicenter, placebo-controlled trial of melatonin for sleep disturbance in Alzheimer's disease found, on average, no significant improvement in objective measures of sleep. Some patients showed improved sleep quality (less interrupted sleep and reduced daytime sleepiness and agitation), some showed no effects on sleep, and some patients became more aggressive. Three double-blind, placebo-controlled studies with objective assessment criteria for measuring sundowning behavior itself -- not sleep per se -- produced conflicting results. Two concluded that there was a small but statistically significant improvement in sundowning/agitated behavior, although one of these noted that melatonin was less effective than morning bright light therapy. The third controlled study concluded there was no improvement.

The stage of dementia may affect the potential benefit of melatonin. For melatonin to have an effect, it must be able to bind to melatonin receptors. Since the numbers of melatonin MT1 receptors in the SCN are extremely low in late-stage Alzheimer's patients (i.e., only 10% of those found in age-matched controls), supplementary melatonin in the late stages may not have a discernible effect on circadian rhythm disorders. Moreover, the sleep/circadian timing systems are the product of complex interactions among multiple brain regions, neurotransmitter systems and modulatory hormones. The rhythmic levels of many other hormones besides melatonin (e.g., cortisol, vasopressin, pulsatile luteinizing hormone, testosterone secretion, dehydroepiandrosterone, beta-endorphine) may be affected in Alzheimer's patients. Since abnormalities in any key neurotransmitter system will impinge on the sleep/circadian timing systems at multiple levels, oral supplements of a single hormone are unlikely to readjust the entire, complex sleep/circadian timing systems as the dementia progresses and more of these neurotransmitter systems are damaged.

Studies on bright light therapy in combination with melatonin supplements have also produced conflicting results. Haffmans et al (2001), for example, found that bright light therapy has a positive effect on sundowning, whereas bright light therapy plus melatonin does not. They hypothesized that the treatment, as designed, "overshot" the chronobiological synchronization of the melatonin supplement. (In healthy people, the density and the sensitivity of melatonin receptors are elevated during the daytime, when endogeneous melatonin levels are low. Hence, a melatonin dose given at a time when melatonin receptor density and sensitivity are lowest may show no effect compared with the same dose given when receptor density and sensitivity are highest.) Others found that the combination reduced agitation and improved several sleep parameters, although some adverse side effects were reported (dysphoric mood, irritability, dizziness, and headache.)

One recent study concluded that melatonin should only be used in combination with bright light therapy. Melatonin by itself shortened sleep onset latency and increased total sleep time; however, it also decreased affect ratings and increased withdrawn behavior, which were counteracted by light therapy. ("Affect" refers to the experience of feeling or emotion.)

All of these were relatively short-term studies. It should be noted that the safety of long-term use of melatonin supplements has never been established. Melatonin can cause a number of serious side effects -- including confusion and depression -- which become more likely as the patient continues to receive it. Supplemental melatonin may exacerbate seizure disorders, which is a concern for Alzheimer's patients since they can develop seizure disorders at any stage. Since melatonin shrinks arteries, it may be contraindicated in loved ones with cardiovascular disease (including vascular dementia). It may also aggravate autoimmune disorders (which can cause dementia symptoms) such as arthritis and severe allergies.

Daily administration of melatonin, even of a low dose (e.g., < 3 mg) can cause the loved one to build up a tolerance, and can eventually disrupt, rather than improve, sleep in some people. Also, melatonin can have serious interactions with a number of medicines, including the antidepressants that are often prescribed for Alzheimer's patients, blood thinners (e.g., warfarin, heparin), blood pressure medications (especially nifedipine), drugs that may affect the immune system (e.g., azathioprine, cyclosporine, prednisone), and fluvoxamine. Anyone considering starting a loved one on melatonin should first discuss it with the doctor and the pharmacist.

- Physical activity

Numerous studies have concluded that exercise can help minimize or eliminate agitated behavior in dementia patients. Exercise also has been linked to phase shifting of circadian rhythms as well as promotion of more restful sleep in older adults, and is considered to be likely to do the same for dementia patients, although no controlled trials that looked at the isolated effects of exercise on sleep in dementia have been done, to my knowledge. Regular exercise also builds muscle mass, improves strength, reduces falls, and improves mood. There do not appear to be any down sides to physical activity, as long as the exercise program is designed for the capabilities and interests of the loved one, whereas there are many potential benefits.


4.4. Let them eat chocolate

Over the past dozen or so years, Alzheimer's care has been undergoing a major paradigm shift, toward "person-centered care". Person-centered care is based on the premise that the personality of the loved one is increasingly concealed rather than lost, and therefore seeks to personalize the loved one's care and environment, to honor who he is and what brings him joy.

This has led to recognition of the fact that the loved ones' behaviors may often be understood as expressions of their individual desires and needs, rather than simply as symptoms of the disease process. As the loved ones' dementia advances, they experience increasing deficits in all aspects of their lives, but most especially and importantly, they lose the ability to verbally communicate their needs -- physiological, psychological, spiritual, social, and comfort needs -- to others. Their behaviors become the conduit for expressing their needs, pleasures, and frustrations. Stress, from fatigue, changes in routine, caregiver, or environment, demands that exceed the loved one's ability to function, multiple and competing stimuli, perceptions of loss, and physiologic factors such as illness, pain, discomfort, and adverse effects of medications, can result in anxiety and increasingly dysfunctional behaviors. In this context, behavioral "symptoms" -- both verbal manifestations such as repetitive questioning or vocalizations and non-verbal ones including withdrawal or physical violence -- can be interpreted as communications meant to convey specific messages and to achieve particular goals relating to unmet needs. Comfortable people do not hit, scream, pound on tables, or call out.

If the loved one's needs remain unmet while the caregivers' energies are directed toward curtailing the behaviors themselves, the likely outcome of this miscommunication is a vicious cycle of further withdrawal and isolation due to perceived inability of the loved one to interact effectively with others, leading to increased depression and anxiety, leading to more dysfunctional behaviors.

Here we get to the crux of it: If the loved one's circadian rhythm is out of whack, and we struggle mightily to force the loved one into wake-sleep patterns that fit our own circadian rhythms instead of his, won't we be in danger of increasing his agitation, as an expression of his stress, fears, and discomfort? And to my way of thinking, this concern is supported by the rash of studies, both recent and not so recent, which have shown that allowing dementia patients to be active when they choose to be active, and sleep when they choose to sleep, may decrease, or even eliminate, serious behavioral problems.

For example, in a study of more than 50 nursing homes (Sloane et al 1998), the proportion of residents who exhibited an agitated behavior varied from "none" in several homes to 38% in one home. Lower rates of agitation were seen in homes that had higher proportions of residents in bed during the day.

More recently, the Parker Jewish Institute in New Hyde Park, NY, implemented a "midnight snack" program, giving wanderers access to food and beverages at will in the middle of the night, instead of insisting that they go back to bed. They report that the program resulted not only in far less agitation among their residents, but also in a sharp decrease in falls and related injuries, and even a huge decrease in pressure sores.

The Hebrew Home at Riverdale in New York established "ElderServe at Night", an "Adult Night Care" program that offers activities and socialization, meals and showers, and even evening trips to the circus or nearby restaurants, for loved ones who are active at night and sleep during the day. Both the patients and their caregivers are enthusiastic about the program. The patients are more alert and happy, and exhibit far fewer behavioral problems, while their families can sleep soundly through the night.

Beatitudes nursing home in Phoenix has gone even further, setting up a person-centered care facility in which residents are allowed to sleep, be bathed, and dine whenever they choose, and eat and drink whatever appeals to them -- even a little alcoholic "nip" now and then. There is a 24-hour restaurant which functions as the primary dining room and snack area. There is an around-the-clock activity program, that offers a balance of sensory-calming and sensory-stimulating activities individualized to each resident. Instead of group activities such as bingo, in which few residents could actually participate, they conduct one-on-one activities -- block-building, coloring, simply conversing -- and use art, music, and exercise to "generate positive emotions", and the outdoors to create connections with the wind, bird song, and sunshine. They have eliminated anything that might be considered restraining, from deep-seated wheelchairs that hinder standing up to bedrails (although some beds are lowered and protected by mats). Bathing is a pleasurable experience and the towel bath method is an option for those who no longer enjoy a shower. Instead of using antipsychotics to treat serious behavioral issues, emphasis is on adequate pain medication and antidepressants. There is no sundowning -- even though the facility is specifically for patients with moderate to severe dementias (of all sorts, including frontotemporal dementia and dementia with Lewy bodies), and accepts those who previously exhibited serious behavioral problems; and even though residents are allowed to stay until they die.

In 2005, Beatitudes instituted a training program for qualified and interested nursing facilities to learn best practices in person-centered dementia care. Those facilities similarly report a reduction in the use of antipsychotic, antidepressant, and sedative medications, decreased use of physical restraints, decreased weight loss, and less hospitalization and emergency department use.

In short, it seems prudent to adjust "conventional wisdom" recommendations to take personal preferences of the loved one into account, including preferences for wake/sleep cycles and napping, to the greatest extent practicable. One caregiver on a discussion forum noted that her loved one was very resistant to staying in bed at night, and was developing behavioral problems. The situation was resolved simply by offering a midnight snack. Beatitudes emphasizes that it is much easier and more effective to anticipate needs rather than wait for a behavior to occur. Caregivers need to be sure to identify discomfort (such as pain, constipation, skin deterioration, malnutrition, physical exhaustion, and adverse drug effects) and manage it effectively. Offer food and drink frequently; anticipate bowel and bladder needs by regularly escorting the loved one to the bathroom (on the loved one’s schedule); and assure other comfort needs are met such as comfortable clothing, room temperatures, and lighting and noise levels. Activities need to be meaningful to the loved one, with the opportunity to make connections to the people and the environment around him; and should be offered to the loved one, not forced on him. Remember that too much stimulation can be just as harmful (if not more so) as too little.

It is one thing for a well-staffed facility to cater to its residents' unique needs, but it may not be practical for the at-home caregiver to adjust the entire household to the rhythms of the loved one. If your loved one simply must be active in the middle of the night, one thing that might be considered is setting up a "safe room" where your loved one can safely pace, which allows you to sleep more soundly. Beverly Bigtree Murphy (if you're not familiar with her website, you should be) describes the "safe room" she set up for her husband -- who paced at night for two years -- at: http://bigtreemurphy.com/Symptoms%20of%20Taking%20Charge%20Stage%20of%20Care.htm#Sundowing,%20Ritualistic%20Behaviors,%20Ccompulsions


5. When all else fails

Learning person-centered care techniques sounds like a lot of hard work and effort. Actually, the sooner the caregiver begins learning "how to speak Alzheimer's", the better off everyone will be, and the less likely that behavioral problems will crop up. Studies have repeatedly shown that caregivers trained in non-drug interventions can not only reduce the frequency and severity of behavioral symptoms and produce higher quality of care for their loved ones, but also reduce their own depression and burden.

Are there medicines that may help? There is some evidence that antipsychotics may help reduce agitation in select patients, but little evidence to support the use of other drugs that are sometimes suggested, such as benzodiazepines, antihistaminics, anticonvulsants, monoamine oxidase inhibitors, or SSRIs. To date, there is no published Class I evidence that any of these drugs are useful for treating sundowning per se. Moreover, there is an increasing reluctance on the part of educated doctors to prescribe medicines for "treating" sundowning because (a) evidence indicates that non-drug interventions are more likely to be beneficial, (b) antipsychotics and benzodiazepines further weaken the already unstable sleep-wake rhythms and further decrease neuronal metabolic activity, and (c) each class of drugs carries considerable risk, ranging from increased likelihood of falls and hip fractures, confusion, psychoses, weight loss, stroke, and/or heart attacks, to increased likelihood of sudden death. Concomitant use of cholinesterase inhibitors (Aricept/donepezil, Razadyne/galantamine, and Exelon/rivastigmine) and antipsychotics may increase the risk of extrapyramidal symptoms by disrupting the acetylcholine/dopamine balance in the striatum. In addition, some drugs are contraindicated for loved ones with some types of dementia, such as the antipsychotics to which Lewy body dementia patients are typically extremely sensitive.

However, each loved one is different. If all else fails, yours might be helped by a drug that is not generally beneficial. Given the risks associated with the candidate drugs, plus possible interactions with other medicines your loved one may be taking, it would be prudent to seek the help of a highly qualified and experienced neuro or geripsych to manage the treatment for your loved one. Be sure to discuss the risks with the doctor, and ask what adverse effects to watch for.

If you are willing to consider trying something outside-the-box, there have been two successful (albeit tiny) clinical trials on using prazosin to treat agitation and aggression in Alzheimer's patients. Two larger trials are now recruiting. Prazosin is a mild antihypertensive with a good safety profile, is inexpensive, and is becoming more and more widely used to treat sleep disruption and agitation associated with PTSD. Given an hour before bedtime, low doses of prazosin reduce light sleep, normalize REM sleep, and increase total sleep time. An additional daytime dose was found to reduce residual daytime agitation symptoms of civilian trauma victims.


Further reading and references

General overviews on sundowning, circadian rhythms, and sleep disturbances

- Volicer L, Harper DG, Manning BC, Goldstein R, Satlin A. Sundowning and circadian rhythms in Alzheimer's disease. Am J Psychiatry 2001;158 (5): 704–11.
http://ajp.psychiatryonline.org/cgi/content/full/158/5/704
- Bachman D, Rabins P. "Sundowning" and other temporally associated agitation states in dementia patients. Annu Rev Med. 2006;57:499-511.
http://cursa.ihmc.us/rid%3D1GM097FD0-1SFSKL8-1FVH/sundowning.pdf
- Kim P, Louis C, Muralee S, Tampi RR. Sundowning Syndrome in the Older Patient. Clinical Geriatrics 2005; 13(4):32-36.
http://www.clinicalgeriatrics.com/article/4013
- Klaffke S, Staedt J. Sundowning and circadian rhythm disorders in dementia. Acta Neurol Belg 2006; 106:168-175
http://www.actaneurologica.be/acta/download/2006-4/03-Klaffke%20et%20al.pdf
- Theison AK, Geisthoff UW, Förstl H, Schröder SG. Agitation in the morning: symptom of depression in dementia? Int J Geriatr Psychiatry 2009 Apr;24(4):335-40.
http://www.gnmhealthcare.com/pdf/09-2008/09/1638914_Agitationinthemorningsymp.pdf
- Wulff K, Gatti S, Wettstein JG, Foster RG. Sleep and circadian rhythm disruption in psychiatric and neurodegenerative disease. Nat Rev Neurosci. 2010 Aug;11(8):589-99.
http://www.ncbi.nlm.nih.gov/pubmed/20631712
- Ancoli-Israel S, Ayalon L. Diagnosis and Treatment of Sleep Disorders in Older Adults. American Journal of Geriatric Psychiatry 2006; 14:95–103
http://www.focus.psychiatryonline.org/cgi/content/full/7/1/98
- Harper DG, Stopa EG, McKee AC, Satlin A, Harlan PC, Goldstein R, Volicer L. Differential circadian rhythm disturbances in men with Alzheimer disease and frontotemporal degeneration. Arch Gen Psychiatry 2001;58:353-360
http://archpsyc.ama-assn.org/cgi/content/full/58/4/353
- Weldemichael DA, Grossberg GT. Circadian Rhythm Disturbances in Patients with Alzheimer's Disease: A Review. Int J Alz Disease 2010; Article ID 716453.
http://www.sage-hindawi.com/journals/ijad/2010/716453/
- Huybrechts KF, Rothman KJ, Silliman RA, Brookhart A, Schneeweiss S. Risk of death and hospital admission for major medical events after initiation of psychotropic medications in older adults admitted to nursing homes.CMAJ 10.1503/cmaj.101406
http://www.eurekalert.org/pub_releases/2011-03/cmaj-omh032311.php
http://www.cmaj.ca/cgi/rapidpdf/cmaj.101406v1.pdf

Nondrug interventions

- Kolanowski AM, Litaker M, Buettner L. Efficacy of theory-based activities for behavioral symptoms of dementia. Nurs Res 2005 Jul-Aug;54(4):219-28.
http://www.nursing-research-editor.com/authors/OMR/5/OMRManuscript.pdf
Note that the patients engaged in the activities for "up to 20 minutes per day", and the authors referenced Kovach and Wells (2002) who found that the daily activity schedule had to be balanced, since over-stimulation as well as under-stimulation can contribute to agitation.
- Teri L, Logsdon RG, McCurry SM. Exercise interventions for dementia and cognitive impairment: the Seattle Protocols. J Nutr Health Aging. 2008;12:391–394.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2518041/
- Baehr EK, Eastman CI, Revelle W, Olson SH, Wolfe LF, Zee PC. Circadian phase-shifting effects of nocturnal exercise in older compared with young adults. Am J Physiol Regul Integr Comp Physiol. 2003;284:R1542–R1550.
http://ajpregu.physiology.org/content/284/6/R1542.long
- McCurry SM, Gibbons LE, Logsdon RG, Vitiello MV, Teri L. Nighttime Insomnia Treatment and Education for Alzheimer's Disease: A Randomized, Controlled Trial. J Am Geriatr Soc. 2005;53(5):793-802.
http://www.medscape.com/viewarticle/504709

Person-centered care

- Long CO, Alonzo TA. (2008). Palliative care for advanced dementia: A model teaching unit. Practical approaches and results. Arizona Geriatrics Society Journal, 13(2), 14-17.
http://www.nccdp.org/resources/PalliativeCare.pdf
- Long CO. Palliative care for advanced dementia. J Gerontol Nurs. 2009 Nov;35(11):19-24.
http://www.ncbi.nlm.nih.gov/pubmed/19904852
- Belluck P. Giving Alzheimer’s Patients Their Way, Even Chocolate. New York Times Dec 31, 2010.
http://www.nytimes.com/2011/01/01/health/01care.html
- Buckley C, Estrin J. All-Night Care for Dementia’s Restless Minds. New York Times June 12, 2009.
http://www.nytimes.com/2009/06/14/nyregion/14cover.html
- Girshman P. Midnight Munchies Keep Elderly Safer In NY Nursing Home. Kaiser Health News Mar 16, 2010.
http://www.kaiserhealthnews.org/stories/2010/march/16/midnight-munchies-keep-elderly-safer-in-ny-nursing-home.aspx
- Sloane PD, Mitchell CM, Preisser JS, Phillips C, Commander C, Burker E. Environmental correlates of resident agitation in Alzheimer's disease special care units. J Am Geriatr Soc 1998; 46:862-869.
http://www.ncbi.nlm.nih.gov/pubmed/9670873
http://psycnet.apa.org/?fa=main.doiLanding&uid=1998-04923-004
- Gauthier S, Cummings J, Ballard C, Brodaty H, Grossberg G, Robert P, Lyketsos C. Management of behavioral problems in Alzheimer’s disease. International Psychogeriatrics 2010
http://www.cmrr-nice.fr/doc/IP2010.pdf
- Smith M, Buckwalter K. Behaviors associated with dementia. AJN 2005; 105(7):40-52.
http://journals.lww.com/ajnonline/Fulltext/2005/07000/BEHAVIORS_ASSOCIATED_WITH_DEMENTIA__Whether.28.aspx
- Rader J, Barrick AL, Hoeffer B, Sloane PD, McKenzie D, Talerico KA, et al. (2006). The bathing of older adults with dementia. American Journal of Nursing 106(4), 40-48.
http://www.nursingcenter.com/library/JournalArticle.asp?Article_ID=637530
- Whall AL. Changing the care provided persons with dementia -- The role of experiential knowledge and philosophy of science.
http://www2.oakland.edu/oujournal/files/15_changing_the_care.pdf
- McGeorge, S. (2008) Acute Mental Health Issues, in Older People and Mental Health Nursing: A Handbook of Care (eds R. Neno, B. Aveyard and H. Heath), Blackwell Publishing Ltd, Oxford, UK.
http://faculty.ksu.edu.sa/73408/documents/older_people_and_mental_health_nursing.pdf#page=171

Person-centered care at home

- Brackey J. Creating Moments of Joy: A Journal for Caregivers, Fourth Edition. Purdue University Press; (September 1, 2008)
http://www.enhancedmoments.com/
- The Savvy Caregiver training program
http://www.caresprogram.com
(You may be able to get a 20% discount with code AADVD20 .)
- Feil N. The Validation Breakthrough: Simple Techniques for Communicating with People with 'Alzheimer's-Type Dementia, Second edition. Health Professions Press (January 15, 2002).
http://www.vfvalidation.org

Bright light therapy

- Forbes D, Culum I, Lischka AR, Morgan DG, Peacock S, Forbes J, Forbes S. Light therapy for managing cognitive, sleep, functional, behavioural, or psychiatric disturbances in dementia. Cochrane Database Syst Rev. 2009 Oct 7;(4):CD003946.
http://www2.cochrane.org/reviews/en/ab003946.html
- Skjerve A, Bjorvatn B, Holsten F. Light therapy for behavioural and psychological symptoms of dementia. Int J Geriatr Psychiatry. 2004 Jun;19(6):516-22.
http://ot.creighton.edu/community/EBLP/Question4/Skjerve%202004%20Light%20Therapy%20for%20behavioral.pdf
- Ancoli-Israel S, Martin JL, Gehrman P, et al: Effect of light on agitation in institutionalized patients with severe Alzheimer disease. Am J Geriatr Psychiatry 2003;11:194-203.
http://luminoterapia.blogdiario.com/img/Luminoterapia-Alzheimer.pdf
- Barrick AL, Sloane PD, Williams CS, Mitchell CM, Connell BR, Wood W, Hickman SE, Preisser JS, Zimmerman S. Impact of ambient bright light on agitation in dementia. Int J Geriatr Psychiatry. 2010 Oct;25(10):1013-21.
http://www.ncbi.nlm.nih.gov/pubmed/20104513

Melatonin

- Melatonin. Alzheimer Research Forum.
http://www.alzforum.org/dis/tre/drc/detail.asp?id=52
- Gehrman PR, Connor DJ, Martin JL, Shochat T, Corey-Bloom J, Ancoli-Israel S. Melatonin Fails To Improve Sleep Or Agitation In A Double-Blind Randomized Placebo-Controlled Trial Of Institutionalized Patients With Alzheimer’s Disease. Am J Geriatr Psychiatry. 2009 February; 17(2): 166–169.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2630117/
- Asayama K, Yamadera H, Ito T, Suzuki H, Kudo Y, Endo S. Double blind study of melatonin effects on the sleep-wake rhythm, cognitive and non-cognitive functions in Alzheimer type dementia. J Nippon Med Sch. 2003 Aug;70(4):334-41.
http://www.ncbi.nlm.nih.gov/pubmed/12928714
- Singer C, Tractenberg RE, Kaye J, Schafer K, Gamst A, Grundman M, Thomas R, Thal LJ. 2003. A multicenter, placebo-controlled trial of melatonin for sleep disturbance in Alzheimer’s disease. Sleep 26(7): 893–901.
http://www.chalmersresearch.com/bmg/docs/t2a3.pdf
- Serfaty M, Kennell-Webb S, Warner J, Blizard R, Raven P. 2002. Double blind randomised placebo controlled trial of low dose melatonin for sleep disorders in dementia. Int J Geriatr Psychiatry 17(12): 1120–1127.
http://www.chalmersresearch.com/bmg/docs/t2a2.pdf

Bright light and melatonin

- Haffmans PM, Sival RC, Lucius SA, Cats Q, Van Gelder L. Bright light therapy and melatonin in motor restless behaviour in dementia: A placebo-controlled study. Int J Geriatric Psych 2001; 16[1]:106-10
http://ot.creighton.edu/community/EBLP/Question4/Haffmanns%202001%20Bright%20light%20therapy%20and%20melatonin.pdf
- Dowling A, Burr Robert L, Van Someren Eus JW, Hubbard Erin M, Luxenberg JS, Mastick J, Cooper BA. Melatonin and bright-light treatment for rest-activity disruption in institutionalized patients with Alzheimer's disease. J Am Geriatr Soc 2008; 56(2): 239-246.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2642966/
- Riemersma-van der Lek RF, Swaab DF, Tiwsk J, Hol EM, Hoogendijk WJ, Van Someren EJ. Effect of bright light and melatonin on cognitive and noncognitive function in elderly residents of group care facilities: a randomized controlled trial. JAMA. 2008;299:2642–2655.
http://jama.ama-assn.org/content/299/22/2642.long

Cholinesterase inhibitors (ChEIs)

- Nieoullon A, Bentué-Ferrer D, Bordet R, Tsolaki M, Förstl H. Importance of circadian rhythmicity in the cholinergic treatment of Alzheimer’s disease: focus on galantamine*. Curr Med Res Opin. 2008 Dec;24(12):3357-67.
http://www.ncbi.nlm.nih.gov/pubmed/19032118
- Davis B, Sadik K. Circadian cholinergic rhythms: implications for cholinesterase inhibitor therapy. Dement Geriatr Cogn Disord. 2006;21(2):120-9.
http://www.ncbi.nlm.nih.gov/pubmed/16391473
- Robert P. Understanding and Managing Behavioral Symptoms in Alzheimer’s Disease and Related Dementias: Focus on Rivastigmine. Curr Med Res Opin. 2002;18(3).
http://www.medscape.com/viewarticle/439728

Prazosin

- Wang LY, Shofer JB, Rohde K, Hart KL, Hoff DJ, McFall YH, Raskind MA, Peskind ER. Prazosin for the treatment of behavioral symptoms in patients with Alzheimer disease with agitation and aggression. Am J Geriatr Psychiatry. 2009 Sep;17(9):744-51.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2842091
- Wang LY, Petrie EC, Rohde K, Hart KL, Hoff DJ, Shofer JB, Rasking MA, Peskind ER. P2-277: Prazosin for treatment of disruptive agitation in Alzheimer's disease. Alz & Dementia 2008;4(4):T453
http://www.alzheimersanddementia.com/article/PIIS1552526008015136/fulltext
- Two larger trials are now recruiting.
http://clinicaltrial.gov/ct2/show/NCT01126099
http://clinicaltrial.gov/ct2/show/NCT00161473
- Taylor FB, Martin P, Thompson C, et al. (2008) Prazosin effects on objective sleep measures and clinical symptoms in civilian trauma posttraumatic stress disorder: a placebo-controlled study. Biol Psychiatry 63:629–632.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2350188
- Raskind MA, Peskind ER, Hoff DJ, et al. (2007) A parallel group placebo controlled study of prazosin for trauma nightmares and sleep disturbance in combat veterans with post-traumatic stress disorder. Biol Psychiatry 61:928–934.
http://axon.psyc.memphis.edu/~charlesblaha/7705/Papers_10/Aycock%20Rebecca%20-%20Prazosin%20and%20PTSD.pdf
- Raskind MA, Peskind ER, Kanter ED, Petrie EC, Radant A, Thompson C, et al. Reduction of Nightmares and Other PTSD Symptoms in Combat Veterans by Prazosin: A Placebo-Controlled Study. Am J Psychiatry. 2003;160:371–373.
http://ajp.psychiatryonline.org/cgi/content/full/160/2/371
- Taylor F, Raskind MA. The alpha1-adrenergic antagonist prazosin improves sleep and nightmares in civilian trauma posttraumatic stress disorder. J Clin Psychopharmacol. 2002;22:82–85.
http://www.ncbi.nlm.nih.gov/pubmed/11799347
- Taylor F, Lowe K, Thompson C, McFall MM, Peskind ER, Kanter ED, et al. Daytime prazosin reduces psychological distress to trauma specific cues in civilian trauma posttraumatic stress disorder. Biol Psychiatry. 2006;59:577–581
http://www.ncbi.nlm.nih.gov/pubmed/16460691