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Lewy Body Dementia affects approximately 1.4 million Americans, and is most common in individuals over the age of 50. This disease is associated with a host of cognitive changes, and symptoms often include a change in sleeping habits. If your loved one has been diagnosed with Lewy Body Dementia (LBD) and is experiencing trouble sleeping, it may be helpful to try the tips we share below.
Exposure to Natural Light
Sleep disturbances can be challenging for both the patient and caregiver. Lack of sleep often results in a host of negative side effects, and especially so for those diagnosed with LBD. Waking up multiple times per night or failing to reach deep sleep may lead to an increase in delusions or hallucinations, and can also poorly impact memory and mood. To encourage restful nights, be sure to offer your loved one plenty of exposure to natural light each day. Spending at least 30 minutes outdoors daily can have a significant impact on health. Sunlight is essential for boosting Vitamin D levels and regulating circadian rhythms, and may help individuals of all ages enjoy a better night’s sleep.
Adequate Exercise
An appropriate level and amount of exercise is a vital component of treatment for LBD. Gentle forms of exercise, such as walking or yoga, should be included in the daily routine for patients in the early or middle stages. Regular exercise may not be feasible as the disease progresses, but it’s important to make an effort to encourage consistent physical activity for as long as possible. Just a few minutes of exercise per day can make a noticeable impact on the individual’s quality and length of sleep.
Establish a Routine
In many cases, those with LBD or other forms of dementia lose the ability to stick with a predictable routine for sleeping and waking. An inconsistent schedule can wreak havoc on sleep patterns for individuals of all ages, and patients with LBD often benefit from assistance with maintaining a routine. If possible, check in with your loved one each morning and night to ensure a consistent sleep schedule. For those in the early stages of LBD, a simple wakeup call may suffice. To promote a healthy environment for falling asleep, remind or assist the patient to dim the lights and limit screen time a couple of hours before bed.
Sleep disorders and hallucinations are among the most common Lewy Body Dementia symptoms. Other symptoms may be exacerbated by lack of sleep, so it’s important to encourage healthy habits. The tips we share here are just a few options to promote restful nights for those with LBD, and if you need additional support, don’t hesitate to reach out to us at the Lewy Body Dementia Resource Center. Our helpline is available seven days per week, and we’re happy to speak with you and offer resources or insight. To get in touch with us, call 516-218-2026 or send us an email.
My husband is in early stage levy body. The doctors are trying to place him on a medication to help him sleep. Right now he is up on and off every couple of hours every night. Is there any medication(s) that would be recommended. Right now he is on Trazadone and is not working. Thank you
Hi Marie,
Thanks for writing. I will email you directly so we can talk about all that is going on which may be helpful in addressing this.
My husband is also in the early stages of Leah Body. Our doctor recommended malatonin. Mel uses it most every night and he is sleeping better. You can get this at any drugstore. Worth every penny.
Thanks for your comment, Priscilla. Yes, just as in the general population, melatonin can work well for many people with LBD. It doesn’t help with sleep for everyone.
My wife falls asleep quickly and sleeps soundly until about 3 am, then is up about every 30 minutes thinking about something. She is not calling out or physical, just wants to get up.
She takes a small dose of mirtazapine (15 mg) and melatonin (3 mg) at bed time.
She is in the middle stages of LBD — no executive function; unable to find words and complete sentences; requires assistance with all ADLs..
Any thoughts on how to help her get back to sleep or sleep through the night?
THANK YOU
Hi Tom,
You mention that she is unable to find words and needs help with everything. Is she on many other medications that may be affecting these aspects and possibly even her sleep?
Norma
Her meds are:
Rivastigmine 9.5mg patch
Carbidopa-Levodopa one-half of 25/100 mg tablet at 8 am, 11 am, and 2 pm
Mirtazapine 15 mg at bedtime
Melatonin 3 mg at bedtime
Levothyroxine 75 mg daily one-hour before breakfast
Nitrofurantoin 50 mg at breakfast to ward off UTIs which have been a chronic problem in the past
We are trying to add weight and stay hydrated, so she is drinking 2 Ensures and about 16 oz of pedialyte during the day
THX for thinking about this for me.
Tom,
Your wife sounds like she is the same as my mom. Diagnosed with Parkinson’s first now she is middle stage LBD. She gets up at 3am, 4am etc. she wakes my sister who lives with her. She wants to get a shower and start the day. My poor sister is not getting rest and my mom does not remember most of the time that she is doing it. It’s tough and a long goodbye.
Hi Tom,
You certainly are doing everything you can to help her. Might changing the time she goes to sleep help?
Norma,
Her insomnia seems to be related to her thinking about things to do or somethng affecting her, so she wants to get up.
A very busy mind!
After a week of being up from 3 am on, she slept through the night (except for bathroom) for two nights. Either she became exhausted, or the busy thohgts have passed for now.
We’ll see.
Thx
Tom
I’m glad to hear she slept! Sometimes it can just be sporadic. I hope it is.
My Dad is in the advanced stages of LBD. He will turn 89 end of August. Up until recently, he was sleeping well. Now he sleeps for 2-3 hours, gets up and may or may not get back to sleep. We have him on 10mg of Melatonin, but it is not helping. Several of his aides have highly recommended Seroquel, but his doctor is holding off. Apparently Seroquel can have side effects with LBD. I am open to any suggestions. Thank you!
Hi Rose,
Thank you for writing. Per many neurologists, Melatonin can generally be given at a does of up to 15 mg. Re Seroquel, please note that this strong medication is used for hallucinations, not sleep. There are other medications that can help with sleep. Please speak to your father’s neurologist or geriatrician about this. If you want more help, you can always call our Helpline at 516-218-2026 or 833-LBD-LINE.
My husband was recently diagnosed in January with LBD at age 40. He is experiencing horrific nightmares that either wake him up or keep him from getting adequate sleep. He’s been on SEROQUEL for months and they keep increasing his doses. Doesn’t seem to help with hallucinations or REM sleep disorder as of yet. Also on Clonazepam (just started low dose) also not seeming to help. He was prescribed a sleep apnea machine for mild apnea. however due to the night terrors along with PTSD he’s struggling to keep that on without tearing it off mid night terror. I have spent days on end googling what could help and I am struggling with that so far. This is devastating. Any suggestions or advice would be greatly appreciated. Thank you kindly.
Dear Stacy,
I’m so sorry to hear about this. It may be best to speak by phone on our Helpline at 516-218-2026 or 833-LBD-LINE. Please call or send us your number and we’ll be happy to call you.
My husband is 56 and has been diagnosed with LBD. He falls asleep easily at night but is increasingly battling daytime sleepiness. His nurse practitioner has his on meds to help him sleep however, he wakes up still feeling tired. He struggles to keep his eyes open even before he takes his night meds. Is there anything he can do? He is also a double BKA so he cannot get up and exercise either.
Donna, it is difficult to say without knowing what medications he is currently being given. You can call our Helpline if you would rather speak there at 516-218-2026.
My Mother was diagnosed with LBD in Nov 2019 at age 95. when I wrote down the things that were happening to her, the Doc knew right away it was LBD and put her on 10 mg of donepezil. worked very well. About a year later same hallucinations as before, Doc added 25mg of Quetiapine. That worked very well too. Now 1 year later and it is happening again. Her days and nights are mixed up. terrible hallucinations, not eating. She seems to do better when she has at least 4 hours of good sleep. Somedays she will get on her low ride exercise bike but its been months since she has gone outside even to sit. She sees the Doc tomorrow so hopefully she has something else that will work. It was good to read the comments above and thought I would share as well. Thank you for listening and sharing.
Thank you for sharing this, Connie. Please keep us posted on what the doctor says.
Doc removed Donepezil 10 mg and Lipitor 10 mg. Increased Quetiapine from 25 mg to 50 mg. We start this tonight. I forgot to ask how long it would be before we know if its helping. Mom had a good day today, we kept our routine of going for a milkshake after the doctors office. I think she comprehended most of what was going on today. I’ve got my fingers crossed again because her hallucinations are very real and very scary to her.
Mom has had 3 good days since the medication change, with just a slight sign of LBD on the second day. No hallucinations which is great, slightly irritable on Friday morning. Her appetite is back and she seems more interested in what is going on. We will just take it one day at a time.
Connie, that’s good to hear. Thanks for keeping us posted.
Wow she woke up this morning and said she feels great. Hallelujah! I have a large black foam poster board that I have been placing over her window at 7pm. makes her room a little darker and she can’t see the car lights passing by. I take it off at 7am and this helps her sleep through the night. We had a lot of activity on Sunday so it helps she was really tired. we do have melatonin for her if needed.
Mom has had a few bad days, mostly when her evening sleep is interrupted. The black poster board is working well over her window at night. she seems to be sleeping a lot better at night but also more than usual during the day. weight loss is a concern now, she is down to 115 pounds. Trying to fix all her favorite foods but her taste has changed. she eats a few bites and she’s done. The one thing she does like is the Glucerna vanilla nutrition drink, when I add ice and put it in the blender for a milk shake.
I’m having the opposite problem with my husbands sleep. He was diagnosed last year w Dementia amd several months ago w Lewy body dementia
He sleeps as if he’s in a coma for days and nights. He will get up to eat and maybe shower but then right back to bed
He has a lot of dreams and when he’s awake he feels like the dreams are real but knows they’re not
Is this unusual?
Thank you
Hi Paula,
Which medications is he taking? Might some of those be contributing to his excessive sleep? It is normal for a person with LBD to have excessive daytime sleepiness but this sounds a bit more than that. Having dreams and feeling like they are real but knowing they are not is not unusual for people with LBD.
My problem is the exact opposite from the ones above. My husband has been diagnosed with early onset Lewy Body Dementia (several months ago). He is sleeping too much. He’ll go to bed at a decent hour and if I don’t call and wake him up, he’ll sleep most of the day. And even if I wake him up, there is no guarantee that he will not go to sleep in his recliner. (I still work so he is home alone Monday-Friday, 6:30 AM to about 6:00 PM.)
He goes to Snap’s 3-4 times a week and I try to get him to walk 1/2 mile to a mile each day, weather permitting and I’m trying to have both of us eat healthier.
Any suggestions would be helpful. We don’t go back to his neurologist until January.
Hi Pam,
Please know that excessive sleepiness is one of the symptoms for many people with LBD. See if you can keep him busy with an activity or two during the day. At other times, please know tht it’s ok if he naps when he needs to do so.
My husband has Parkinson’s Disease with suspected Lewy Body Dementia. He has nighttime wakefulness and very active scary hallucinations where he moves furniture, thinks there are crabs/ferrets/etc. trying to swarm over him and bite. We removed paintings from the room because I was afraid he would hurt himself taking them down from the wall nearly every night, and we exchanged the fan light with a close to the ceiling fixture because he “hung” on the fan lights at night thinking they were unscrewing the fan to the wall. During the day he is easy to deal with but I am truly at my wit’s end.
He has fewer hallucinations during the day but does have them…talking to people who are not there, feeling like he is accompanied on his walk by a dog or two (not there).
I am wondering if it is time to place him in a memory care facility which doesn’t seem fair to him but I am feeling unsafe at night.
I am a painter/author who is now getting nothing done.