Joan is a retired elementary school teacher. She is the kind that students remember with great fondness. Now she's 84 years old and life has changed. She has Alzheimer’s Disease and lives with her daughter's family. Although she can still hold a conversation, she is anxious. She falls asleep for long periods during the day but is frequently awake at night. Then she goes from room to room switching on the lights and searching for her cat.
Her PCP prescribes a sedative. However, one night, Joan's search for the cat leads her outside, and she trips and falls. Disoriented and bleeding, she knocks on a neighbor’s door. The police are called and Joan is rushed to the emergency room. Soon thereafter, the family makes the distressing decision to move her to a nursing home. Her lifetime savings are depleted in three months.
Getting high quality sleep is essential for the brain to function at its best. Sleep disturbances are associated with an increased risk of developing dementia.
Good sleep is even more critical for people living with dementia. But diseases such as Alzheimer’s have the reverse effect. Sleep is more fragmented with nighttime awakenings, daytime drowsiness, and disrupted sleep cycles. This results in a vicious cycle of worsening confusion and sleeplessness. The result is functional decline, a poorer quality of life and dismal outcomes.
It's not just the person with dementia who suffers. Nighttime insomnia and wandering are one of the most stressful aspects of caregiving. Joan could end up in a nursing home that does not have enough skilled staff to manage her behaviors well. Or, if she’s lucky, she will end up in a setting that is highly skilled in dementia care. Joan’s story may sound dramatic, but it is not. Poor sleep has a major impact. Is it possible to improve Joan’s sleep?
Creating Calm out of Chaos, Not at all Easy
Take a breath. Being a caregiver can be overwhelming. Alzheimer’s Disease causes a severe degree of injury to the brain. Telling someone with dementia to go to sleep won't solve the problem. Improving sleep requires a lot of trial and error. It’s easy to get advice but much harder to come up with a winning solution. Look for people you can rely on to help. Make sure you have emotional support. In addition,
Make happiness a priority
Alzheimer’s is a disease, but unhappiness is not a primary feature of the disease. Make the day happy. Arrange an enjoyable human connection every day. Remember the power of touch. Don’t let arguments ruin the day. A happy person is more likely to fall peacefully asleep. An unhappy or angry person is not.
Stick to a regular daily schedule
Do not allow day and night to blur. Sunlight plays a key role in establishing the body's sleep-wake cycle. Be sure to have an outdoor activity. An active and enjoyable day promotes sleep. Conversely, a person who dozes throughout the day is less likely to be tired at night.
Mental stimulation should be tailored to the person's abilities and interests. Figure out what works. Avoid activities that are boring, anxiety provoking, or frustrating. Typical activities might include going to the grocery store or mall, gardening, or arts and crafts. Engaging activities can decrease anxious or obsessive thoughts. The result is a better night's rest. Conversely, it's important to avoid passive inactivity such as watching television all day.
In my previous post I described other approaches to managing sleeplessness.
When should you add medicines?
Medicines are available to manage behavior and sleep in people with dementia. There are pros and cons to using these medicines. Talk with your provider to decide if it is time to try a medicine.
Healthcare providers vary in what they prescribe for behavior and sleep. There are no large well-designed studies of this problem. As a result, there is no strong consensus regarding medications. Providers prescribe based on the most current available knowledge and their own experience. Below is a short but complicated review of commonly prescribed medicines.
Melatonin is a hormone that promotes sleep. Melatonin supplements are used as a sleep aid in older adults. Ramelteon (Rozerem), is a prescription drug that enhances the effect of melatonin. Melatonin is relatively safe. However, there is poor quality control and supplements vary from stated strength. Supplements with a U.S. Pharmacopeia verified label have better quality control. However, there is limited evidence that melatonin is effective in patients with dementia.
Suvorexant (Belsomra) is in a new class of drugs for insomnia. In 2020 it was FDA approved for treatment of insomnia in patients with mild to moderate Alzheimer’s Disease. There is preliminary interest that this drug may decrease the likelihood of Alzheimer’s Disease.
Trazadone, an antidepressant, has been available for more than 40 years. It is sedating but opinions vary about its ability to improve sleep quality. It is not FDA approved for insomnia but is one of the most prescribed drugs for that purpose. A low dosage of 25 to 50 mg is used to promote sleep in patients with dementia. Common side effects include dry mouth and constipation.
Doxepin is also an antidepressant and has been available for more than 50 years. A low dose version of doxepin (Silenor) has been FDA approved for chronic insomnia. One study showed efficacy with limited side effects in older adults.
Benzodiazepines include brand names such as Xanax, Valium, Ativan, Klonopin, and Halcion. They are prescribed for anxiety, muscle tension, and insomnia. “Z-drugs” are similar to benzodiazepines and are prescribed specifically for insomnia. Brand names include Lunesta, Sonata, and Ambien. I have prescribed these types of medicines under specific circumstances. Ativan is often prescribed when patients are on hospice. But patients can become dependent on these medicines. In addition, they can cause confusion and falls in frail elderly patients. These medicines should generally be avoided in patients with dementia.
Over the Counter sleeping pills are not recommended. They can cause confusion and falls. One common component is diphenhydramine.
Mirtazepine (Remeron) is an antidepressant. It is sedating and also increases appetite. As a result, it is often prescribed for dementia with loss of appetite and poor sleep.
Narcotics are sedating but also increase the risk of confusion and falls. They should only be used in the presence of discomfort or pain. I prescribe narcotics carefully realizing the potential for addiction. Narcotics are commonly prescribed when patients are on hospice.
Other medications are available to manage behavioral issues. The risk of serious side effects from these medicines varies from low to high. They should not be used when insomnia is the main concern. A future post will discuss medications for behavior management in patients with dementia.
A good ending
In Joan’s story, she has entered the last chapter of a meaningful life. That chapter can be short or long. What is important is that the chapter be as good as possible for both Joan and those who love and care for her. Below is the alternative outcome that geriatricians hope for:
Joan’s family struggles with various emotions including anger and frustration. But ultimately, Joan’s sleep improves. She gets up at 7 AM every morning and gets dressed, then has breakfast and goes to the bathroom. Then, she watches her favorite show “The Price is Right”. After that she plays a brain game designed for people with dementia. After lunch she takes a short nap. There is always an afternoon outing. Some days she goes to the mall for a walk. She also enjoys going to watch her granddaughter play soccer. After dinner she prepares for sleep. Her daughter sits by her bedside until she falls asleep around 8 PM. Some days she goes to daycare. There is a regular schedule of helpers. She is taking an antidepressant for anxiety and at nighttime she takes trazadone. The family has purchased a stuffed toy cat that purrs. She still has good and bad days, but the good days outnumber the bad ones. As time goes by needs change and medicines are adjusted. She no longer wanders. As she declines hospice provides support. She passes away at home.
P.S. There is active research on the use of light therapy for sleeplessness and dementia. Chemicals such as CBD and psilocybin are also being studied.