When Sleep Goes Wrong

Lying awake, waking at four, dozing off in the afternoon. Some of it is the disease. Some of it is fixable, and some of the usual fixes make things worse.

Why is my sleep so different since the diagnosis?

Partly the disease itself, which affects the brain's internal clock. Partly worry, medications, other health problems and how your days have changed. Several of those can be fixed.

Dementia can disturb the parts of the brain that keep your body clock steady, so sleep tends to drift: lighter at night, more dozing during the day, waking earlier. Anxiety about the diagnosis adds to it. So can pain, getting up to use the bathroom, and medicines taken for other conditions.

The useful move is to find the parts that can be changed rather than accepting all of it as the disease. Sleep apnea, medication side effects, too little daylight and too much time in bed are all common, and all fixable.

Could I have sleep apnea?

It is worth checking. Sleep apnea appears to be much more common in people with Alzheimer's, and it is treatable.

In obstructive sleep apnea, your airway narrows or closes during sleep, briefly cutting off breathing many times a night. Signs include loud snoring, someone noticing you stop breathing or gasp, waking with a headache or dry mouth, and being sleepy in the day however long you sleep.

A 2016 meta-analysis in Frontiers in Aging Neuroscience pooled five small studies and found sleep apnea in about 45% of people with Alzheimer's disease, compared with about 14% of people without it. The studies were small and old, so treat the exact numbers loosely. The direction is consistent with later research.

Treatment is usually a CPAP machine, which gently blows air to keep the airway open. Small studies have suggested it may help some thinking skills in people with both Alzheimer's and sleep apnea, but that is not yet proven. It does reliably treat the apnea itself, which affects blood pressure, energy and mood. Ask your doctor about a sleep study. Many can now be done at home.

Are sleeping pills safe for me?

Many of the common ones are not a good fit. Several are on the list of medications older adults should generally avoid.

The American Geriatrics Society's Beers Criteria lists medications that tend to cause more harm than good in older adults. Three groups of sleep medicines are on it:

• Benzodiazepines such as lorazepam (Ativan), temazepam (Restoril) and alprazolam (Xanax), because of confusion, falls and fractures.
• "Z-drugs" such as zolpidem (Ambien), eszopiclone (Lunesta) and zaleplon (Sonata), for similar reasons, with only small improvements in sleep.
• Older antihistamines such as diphenhydramine and doxylamine, found in Benadryl, ZzzQuil, Unisom and most "PM" pain relievers. They have anticholinergic effects that can worsen confusion.

If you already take one of these, do not stop suddenly. Some cause rebound insomnia or withdrawal. Ask your doctor or pharmacist about a plan to taper.

Does melatonin or anything else work?

Melatonin is mostly harmless but did not clearly help in Alzheimer's trials. One newer class of drug has better evidence.

A 2020 Cochrane review looked specifically at sleep medicines in people with Alzheimer's disease:

• Melatonin, in five trials with about 250 people with moderate to severe Alzheimer's, showed no clear benefit on the main sleep measures. No serious side effects were reported.
• Orexin receptor blockers, suvorexant (Belsomra) and lemborexant (Dayvigo), in two trials with 323 people with mild to moderate Alzheimer's, probably added about 28 minutes of nighttime sleep and reduced time awake during the night by about 16 minutes. Side effects were probably no more common than with placebo. This had the strongest evidence in the review.
• Low-dose trazodone probably increased nighttime sleep by about 42 minutes in one trial of 30 people with moderate to severe Alzheimer's. That is a small evidence base.

If you are offered a sleep medicine, ask what it is expected to do, how you will know whether it is working, and what it does to balance and next-day alertness.

What helps without medication?

Daylight, a steady schedule, a bed used for sleep, and talking therapy built for insomnia. These are the first-line approach for adults generally.

The American College of Physicians recommends cognitive behavioral therapy for insomnia (CBT-I) as the first treatment for chronic insomnia in adults. CBT-I combines changing unhelpful thoughts about sleep with practical steps such as keeping a fixed wake time and limiting time in bed awake. It can be delivered in person, by phone, online or from a book. The research behind that recommendation was in adults generally rather than people with dementia, so ask a therapist whether they adapt it for memory problems.

Things you can start this week:

• Get bright daylight in the morning. A walk or coffee by a sunny window. Light helps set the body clock.
• Keep the same wake time every day, including weekends.
• Keep naps short and early, before mid-afternoon, if you nap at all.
• Cut caffeine after lunch, and go easy on alcohol, which fragments sleep even when it helps you fall asleep.
• If you cannot sleep, get up. Sit somewhere dim and quiet, and go back to bed when you feel sleepy.
• Write tomorrow's worries down before bed so they are on paper instead of in your head.

What if I act out my dreams?

Tell your doctor. Shouting, punching or kicking while dreaming can be a specific sleep disorder, and it matters for both your diagnosis and your safety.

In REM sleep behavior disorder, the normal paralysis during dreaming does not happen, so people act out dreams, sometimes violently. It is strongly associated with Lewy body dementia and Parkinson's disease. Your doctor will want to know, because it can affect your diagnosis and which medicines are safe for you. In the meantime, move hard or sharp furniture away from the bed, and the person you share a bed with may want to sleep separately until it is treated.