Anyone who’s watched a loved one struggle with dementia knows how cruel the disease can be, gradually stealing memories, personality and independence. On top of that, brain changes from dementia often reduce someone’s ability to sleep well.
“Studies estimate that between one-quarter and one-half of older adults living with Alzheimer’s disease and other dementias experience some form of sleep disruption,” says Monica Moreno, senior director of care and support at Alzheimer’s Association. “These disruptions tend to worsen as dementia progresses.”
The medical field is still trying to understand exactly why dementia takes hold and causes sleep disturbances, adds Dr. Smita Patel, a neurologist and sleep specialist at Endeavor Health’s Center for Brain Health in Glenview, Illinois. Despite evolving theories, and different types of dementia, one thing is clear: dementia impacts the brain’s sleep-wake cycle, often resulting in sleep disturbances, Patel explains.
This doesn’t just affect the person with dementia. “When the patient isn’t sleeping well, the caregiver isn’t sleeping well either,” acknowledges Patel. Read on to learn how dementia impacts sleep, plus practical advice on how family caregivers can help their loved one get some rest.
“Studies estimate that between one-quarter and one-half of older adults living with Alzheimer’s disease and other dementias experience some form of sleep disruption. These disruptions tend to worsen as dementia progresses.”
— Monica Moreno, senior director of care and support at Alzheimer’s Association
What causes sleep disturbances in older adults with dementia
The brain plays a critical role in sleep regulation, Moreno says, but brain changes caused by dementia disrupt the internal body clocks and impact the sleep-wake cycle.
“These changes make it difficult to stay asleep, causing people with dementia to wake up frequently during the night,” Moreno explains, who adds that dementia can also affect the production of a sleep hormone in the brain called melatonin. “This helps the person to feel sleepy when it gets darker in the evening. As a person’s dementia progresses, their brain may make less melatonin, which makes it harder to fall asleep in the evening.”
Depending on the individual and their type of dementia, they may experience sleep-related problems, including:
Sundowning
As dementia progresses, some develop sundowning, or sundowner’s syndrome, as day transitions to night. “Sundowning is not a disease but a set of symptoms or dementia-related behaviors that may include difficulty sleeping, anxiety, agitation, hallucinations, pacing and disorientation,” Moreno says.
REM Sleep Behavior Disorder
This is where they’re falling asleep okay, but during the night, they might act out their dreams,” Patel says. In this type of sleep disruption, they can get up, hit their bed partner, or engage in dangerous behavior, she adds.
Insomnia
Some struggle with restlessness, frequent awakenings, difficulty falling asleep and staying asleep, and other issues that fall into the insomnia bucket, Patel says.
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Expert tips for improving your older loved one’s sleep
Sleep is important for everyone, Moreno says, as it helps improve brain performance, mood and overall health. In fact, getting adequate sleep is one the Alzheimer’s Association’s top suggestions for reducing risk of cognitive decline.
Sleep is especially important for those with dementia, but often more challenging. “For someone living with dementia, lack of sleep or poor sleep further reduces already compromised cognitive functioning,” Moreno explains. “In addition, inadequate sleep can exacerbate dementia-related behaviors such as confusion, agitation and anxiety.”
Here are expert-recommended strategies to help those with dementia catch some Zzzs.
1. Establish a consistent routine
Since dementia can wreak havoc on the body’s sleep-wake cycle, family caregivers should try to regulate their loved one’s sleep, Patel says. Some older adults may resist sleeping on a set schedule, “but once the circadian rhythm is off, it’s important to have a really concrete bedtime and wakeup time,” Patel says.
She also recommends preventing excessive daytime naps, as this can perpetuate a vicious cycle of poor sleep.
2. Rule out other medical issues
It’s normal for dementia to cause sleep disturbances, but if you observe major issues, like excessive daytime sleepiness, Patel recommends a doctor visit to check for other conditions or medications making things worse.
Some underlying factors could be:
- Medication: Ironically, some medications intended to help with sleep can make things worse for those with dementia, Patel says. Side effects from other, unrelated medications could impact sleep at night or cause daytime sleepiness, she notes. Moreno adds that medications for managing depression or dementia-related behaviors are known to interfere with sleep.
- Obstructive sleep apnea: This sleep-related breathing disorder causes pauses in breathing while sleeping. “The lack of oxygen isn’t good for our brain or body, but we have data that when we treat sleep apnea, it can improve your memory,” Patel says. She finds while diagnosing and treating sleep apnea won’t cure a loved one’s memory loss, it might reduce the speed of decline.
- Other physical ailments: Sleep disturbances could be caused or worsened by health issues like urinary tract infections, incontinence problems or restless leg syndrome, notes Moreno.
Depending on the situation, your loved one may need a referral to a neurologist or sleep specialist to look for underlying factors.
3. Promote daytime activity
What a senior does during the daytime is critical, Patel says. Lack of exercise and stimulation, and eating a poor diet (including a lot of sugar), can disrupt sleep at night, she says.
Judy Berry, founder of Dementia Specialist Consulting and founder and past owner of Lakeview Ranch Inc., a dementia-focused residential care center, recommends caregivers also consider how to fulfill emotional and spiritual needs.
Berry suggests building activities into everyday moments to help seniors regulate their sleep-wake schedule while finding meaning and purpose. “It’s not just about the planned activities; it’s about engaging them in conversation throughout their daily activities, including bathing, dressing, toileting, eating, etc.,” she says.
For example, spending time with animals or children, making art, listening to music, being outside or cooking a meal together. “Finding opportunities for them to help you or others and contribute something will keep them from sleeping in a chair,” Berry explains.
4. Get natural light
Exposure to bright outdoor light during the daytime can help people with dementia keep their circadian rhythm (the body’s inner clock) and bedtime on track, Patel says, plus support their mood. She’s found small shifts like serving someone breakfast by a sunny window can help.
If your loved one can’t go outside or their home doesn’t get much natural light, Patel recommends purchasing a light therapy box. This mimics sunshine, she explains, and when used 20 to 30 minutes in the morning, it serves as a light cue that helps keep the brain and body in better rhythm.
5. Create a calming wind-down environment
A relaxing evening routine can help those with dementia fall and stay asleep easier. As bedtime approaches, Patel recommends reducing objects and activities that could cause stimulation or agitation, including electronic screens, lights, the news or even being introduced to new things.
A cool environment is conducive to sleep, Patel notes, so make sure your loved one’s bedroom is sufficiently cold, and get a fan if needed. Additionally, “if they’re agitated and revved up, a weighted blanket can reduce anxiety or promote deeper sleep,” she says.
Tailor it to your loved one, Berry says, though it may take experimentation. For example, she explains, some with dementia sleep best in a dark room, while others get scared by the dark and prefer night lights. Some find music calming, while others find it irritating.
6. Limit sleep-disrupting substances
Too much caffeine during the day can interfere with sleep for anyone, but especially for people with Alzheimer’s.
Additionally, alcohol and nicotine can impact sleep and should be reduced or avoided, Moreno says.
7. Don’t force sleep
As much as caregivers may want their loved one to sleep on a set schedule, Berry says it’s not always helpful to force sleep if it’s not happening. For one, we all have different circadian rhythms, Berry explains, and seniors with dementia are always fighting for independence and dignity when it seems someone is forcing them to do something.
Plus, someone might be restless or resisting bedtime because of an unmet need that isn’t immediately visible. It could be a fear of an unfamiliar place or person, darkness or feeling unsafe, Berry says.
“I could tell nobody was addressing [my mother’s] emotional needs. I could see all she wanted was someone to pay attention to her and recognize her as a human being and sit and hold her hand for a little while.”
— Judy Berry, founder of Dementia Specialist Consulting
8. Look for deeper, unmet needs
If your loved one often has sleep difficulties, with underlying causes ruled out, Berry suggests looking for deeper unmet needs. Her own mother had vascular dementia and was kicked out of 12 facilities, only remaining in one after being put on heavy psychotropic drugs.
“I could tell nobody was addressing her emotional needs,” Berry remembers. Staff said they weren’t sure why she would act out when she’d been fed and changed. “I could see all she wanted was someone to pay attention to her and recognize her as a human being and sit and hold her hand for a little while.”
She learned that many facilities and caregivers focus on physical needs only. Berry’s found that the person is still in there and has feelings; dementia has just impacted their ability to communicate. “If you look at behavior as an attempt at communication instead of a problem, and find ways to understand the underlying emotion, the behavior goes away.” She used this concept as she started her own center and had great success getting dementia patients off psychotropic medication and living fuller lives.
So when sleep disruptions happen, Berry adds, rather than forcing your loved one to sleep, “offer them a snack and a cup of tea and ask for their help with your chores, or just sit and talk and listen to them,” she says. “You will learn a lot, and most times they will go back to bed willingly. You should always be trying to identify their emotional need and validate their feelings.”
If you get frustrated, Moreno recommends remembering that this person’s inability to sleep isn’t their fault, but a consequence of disease-related brain changes. “If the person with dementia wakes during the night, approach them in a calm manner — even though you might be exhausted yourself,” she suggests, adding that she finds it helpful to offer reassurance that all is OK, gently reminding them of the time and avoiding arguing.
Even if you feel desperate, she says, “Never use physical restraints to keep a person in bed. If the person needs to pace, allow the person to do so for a short time under your supervision.”
9. Ask about medication
Non-drug approaches are preferable, Berry says, especially because commonly prescribed psychotropics can have severe negative side effects for those with dementia.
Moreno suggests trying Alzheimer’s Association’s non-drug tips, then seeing a doctor about medication if those fail. Since side effects can impact dementia, “consult with your doctor to learn the risks and benefits of medication before making a decision,” she says. It’s also smart to ask about when meds should be taken, Moreno suggests, since timing can impact sleep patterns.
10. Take care of yourself and consider help
In Patel’s clinic, she frequently encounters family caregivers whose own needs are ignored. So while pouring energy into caring for your loved one, don’t forget to take care of yourself.
For instance, Patel recommends finding opportunities to do activities that benefit both the person you’re caring for and yourself. For example, Patel says, seniors with dementia can greatly benefit from eating balanced, nutritional meals — but so can caregivers and their families. Rather than getting last-minute, unhealthy meals, try meal planning for a few days in advance to have ingredients on-hand for some healthy, easy meals that benefit the whole family.
That said, don’t feel guilty if you can’t do it all. Caregiving for a loved one living with Alzheimer’s or dementia can be exhausting, especially if there are frequent nighttime awakenings. Sometimes it really does take a village. “If sleepless nights are compromising your ability to be a good caregiver, see if other family members or friends can help,” Moreno urges.
If you can’t find a volunteer, “sometimes it becomes necessary to hire a home care aide who stays up at night and can just be with [the senior] when they want to get up and [who] does not rush them back to bed,” Berry says.
Even finding occasional respite care can make a world of difference. Moreno recommends checking out the Alzheimer’s Association’s Community Resource Finder for local respite care services and more.
The bottom line on dementia and sleep
Caring for a loved one with dementia is admirable, important work. However, “navigating sleep challenges can be an exhausting, frustrating experience for caregivers,” Moreno says. “If a person with dementia is not sleeping well, chances are the person’s caregiver is not either. A tired caregiver can become a stressed caregiver, which not only compromises the ability to provide care, but also can have adverse effects on the caregiver’s health.”
There’s no need to suffer in silence or feel guilty for struggling. These expert tips can help you start the process of addressing sleep issues, though if you’re not making progress, Patel encourages making an appointment with a doctor and advocating for your family so you can all get some rest.
Patel acknowledges that some of these efforts won’t completely solve or stop dementia-related sleep issues, but they can reduce negative impacts and even slow decline. As Patel concludes, “That’s what we’re after — to keep them living as normal of a life as possible.”
