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Question:

Pete is 58 years old with sleep apnea and Alzheimer’s. He was not able to tolerate the CPAP machine so the sleep apnea is not treated. At a recent doctor’s visit, I told his geriatrician that staff is reporting more confusion in the evening. The doctor said we could try melatonin. The staffing supervisor is hesitant, I’m on the fence. It’s hard to decide to add a medication or supplement when Pete is not capable of telling you how he feels or if he is experiencing side effects. CBD oil has also been discussed as an option, but I’m even more hesitant about trying that. Is there any information on using melatonin supplements with people with Down’s syndrome? I understand the benefits are only short term. 

Answer:

I am sorry to hear of Pete’s challenges.

Sleep problems are common in people with Down syndrome (DS). Sleep apnea is one of the sleep conditions that is more common in people with DS.

Alzheimer’s disease (AD) is also more common in people with DS. Sleep problems are also more common in people with DS who have AD. Untreated sleep disruption, including sleep apnea, is associated with the development of and/or more rapid cognitive decline associated with AD. In other words, sleep disruption may contribute to the onset of AD and AD may contribute to sleep disruption.

Some individuals with DS are unable to use a CPAP machine throughout their lives. We have also seen some individuals with DS who are able to use a CPAP machine earlier in life but are unable to after declining due to AD. The inability to use CPAP may contribute to more confusion.

For some individuals, raising the head of the bed may help reduce the apnea. In addition, there are a variety of strategies (referred to as sleep hygiene), supplements (including melatonin), and medications that may help sleep disruption (but won’t improve sleep apnea). Improving sleep disruption may have a positive, albeit temporary, benefit for confusion for someone with DS and AD. More information on sleep hygiene, supplements and medications is available in this resource and in our webinar on sleep.

There is very little study of the use of melatonin in people with DS. One small, limited study found that melatonin was safe for use in children in DS with regards to its effect on liver and kidney function and on cholesterol and triglycerides. Another small study in children with DS suggested possible benefit on the immune system and an anti-inflammatory effect (but did not study sleep).

In our experience, melatonin does seem to help some individuals with DS to sleep. Our patients have not experienced concerning side effects. Regarding CBD oil, we have very limited experience and are aware of no studies. In the small number of individuals with DS we are aware of using CBD, no concerning side effects have been reported. You did not ask about use of THC (the psychoactive component of marijuana), but I offer that I do not recommend it because I am aware of no data supporting its use or safety in people with DS.