38. Studying Sleep Early in the Dementia Journey: Five Essential Tips

Do you wish you could get a good night’s sleep? We do too!

We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer’s and other types of dementia, we appreciate the insights Dr. Glenna Brewster, PhD, RN, FNP-BC, Assistant Professor at Nell Hodgson Woodruff School of Nursing at Emory University, shared for all of us about her sleep study titled SLEEPMATE, and how we can all create good sleep habits.

Dr. Glenna Brewster’s background is impressive, and her passion for good sleep is inspiring! In addition to her responsibilities as a professor, she is a nurse scientist, family nurse practitioner, and she leads the Emory University Mind at Rest research team, which develops and tests practical, evidence-based programs to reduce sleep problems and improve health outcomes for people living with memory loss or dementia and their caregivers.

Good sleep isn’t just for your care receiver, this is for you too!

Dr. Brewster’s work is recognized nationally and internationally for advancing dementia care and supporting family caregivers through community partnerships and research.

According to Dr. Brewster:

Sleep problems, especially if you’re a caregiver or person living with cognitive impairment, are significant. You might have a hard time falling asleep, wake up multiple times during the night, or notice that as the disease progresses there is daytime sleepiness. Sleep disturbances are prevalent both in care partners or caregivers and people living with cognitive impairment.

Dr. Brewster has developed the SLEEPMATE study for caregivers and people living with cognitive impairment and types of dementia. It’s a six-week virtual intervention where you participate together. The study examines whether the intervention is feasible, acceptable, and if it improves sleep outcomes. At the end of this blog post is the link you can use if you’re interested in participating in this virtual study.

This topic is incredibly valuable for us as caregivers. We’ve learned the need for quality sleep — and what not having it is like. We’ve also learned that we’re often so focused on quality sleep for our care receiver, we don’t prioritize our own sleep as caregivers!

One important take-away from Dr. Brewster for caregivers it’s so easy not to consider — or to lose sight of:

Your quality of sleep is every bit as important — and sometimes even more — important than your care receiver’s.

We’re sharing five tips for better sleep habits to help both you and your care receiver.

Tip 1: Practice Good Sleep Hygiene

Sleep hygiene means developing daily habits that facilitate and lead to getting good sleep. Good sleep has to do with:

When you fall asleep. You may not sleep all the way through the night, but at least you’ll get some valuable, concentrated sleep.
It also means if you wake up during the night, when you go back to bed you’re able to fall back to sleep.

We found it interesting that good sleep doesn’t necessarily mean that when you wake up in the morning you feel refreshed. Dr. Brewster explains:

You can get good sleep but not necessarily feel refreshed when you wake up, because it’s based on the stage of sleep you’re in when you wake up.

Here are the five key habits to develop for practicing good sleep hygiene:

Keep consistent sleep and wake times: Go to sleep within a 15-minute window each night (for example, if you’re targeting 9 p.m., aim for 8:45–9:15 p.m.) and wake up at the exact same time every day, including weekends. Set an alarm if needed — eventually your body will naturally wake up at that time.
Watch your caffeine intake: If caffeine keeps you up, have your last cup of coffee or caffeine drink before noon. Important tip: Caffeine is hidden in medications and chocolate too, so read labels.
Limit evening substances: Avoid alcohol, large meals, and nicotine within two hours of bedtime. If you’re planning to sleep by 9 p.m., your last drink or large meal should be by 7 p.m.
Time your exercise: Exercise is great, but not too close to bedtime. It makes falling asleep harder. Gentle stretches are okay before bed.
Manage fluid intake: Limit liquids within two hours of bedtime to minimize nighttime bathroom trips. If you or your loved one is thirsty, take small sips rather than drinking eight ounces of water right before bed.

In episode 13 of our podcast, Nancy and I talk about overnight incontinence in our care receiver. While it’s important to be intentional about making sure you limit your loved one’s fluids late in the day, it is very important to make sure your care receiver is getting enough fluids throughout the day. Hydration is vitally important to prevent our care receiver ending up with issues including urinary tract infections (UTI’s).

Tip 2: Limit Daytime Naps

Nancy learned her lesson about this tip, when she took afternoon naps while caring for her husband. Now, if she takes a nap during the day, she limits the amount of time, so she can get to sleep at night.

Dr. Brewster explains:

Think about naps like snacks. Imagine if you’re having a snack too close to dinner time — or you snack too much. When dinner arrives, you’re not hungry. Similarly, if you nap too late, you won’t be sleepy at bedtime.

Here are her key guidelines for napping:

If you must nap: Keep it to 30 minutes or less and before 3 p.m.
Quiet rest is okay: Sue sits quietly with her eyes shut for 5–10 minutes, using her phone timer as her alarm. Dr. Brewster says this relaxation time is fine, and especially helpful for decompressing during the day.

For care receivers with cognitive changes: As the disease progresses, care receivers may want to sleep more during the day, especially when they participate in fewer activities and begin siting around more. Here are a few things that help:

Keep them engaged: Find things they enjoy doing and can continue doing safely. Include these throughout their day.
Let them help: Care receivers can often help prepare meals, do dishes, sort laundry, or fold clothes. It doesn’t have to be perfect! It helps keep them occupied. Sue’s Dad loved folding clothes. They poured a basket of clean clothes on the bed for him to fold. When he finished, they would take him to the kitchen to get him a drink, and, while he was preoccupied, go back into the bedroom and dump the clothes back out for him to fold again. He didn’t remember he’d just folded them and enjoyed folding them again.
Use familiar activities: Dr. Brewster’s grandmother, who had been diagnosed with vascular dementia, loved sweeping. For as long as she could sweep safely, they allowed her to continue this activity that kept her engaged.

Tip 3: Make Your Bedroom Like a Cave

When it’s time to go to bed and sleep for the night, imagine what a cave feels like — cool, dark, and quiet. Here’s how to create that environment:

Cool:

Find your ideal temperature: Cool is different for each person — it might be 65 degrees for some, 70–75 for others.
Work together: Collaborate with your care receiver to find the temperature that works for both of you.
Set the temperature and keep it there: Our bodies like cool temperatures when falling asleep.

Dark:

Turn off the lights: Make the room as dark as safely possible.
Safety lighting: Use small plug-in nightlights in lower outlets to safely navigate to the bathroom at night.
Use blackout tools: Room darkening curtains are ideal, but if unavailable, you can use an eye mask.

Quiet:

Minimize disruptive sounds: Aim for a quiet environment.
Consistent background noise is okay: If you like sound, use white noise, brown noise, pink noise — or a fan — something with soft, consistent noise, that doesn’t change frequency.
Quiet your mind: Throughout her caregiving years, Nancy has learned quiet isn’t just about external noise — it’s also quieting your thoughts. This leads to Tip 4 — Worry Time.

Tip 4: Schedule ‘Worry Time’ Earlier in the Day

This incredibly practical tip is something neither of us had thought of before — and we now prioritize.

It’s reasonable, whether or not we’re a caregiver, we worry. Life is happening and we all have experiences to process. The problem is that, when the day is done and we lay down in bed, it becomes the ideal moment for these thoughts to flood our minds!

As Sue puts it, it’s like they’re saying, “Hey, we’ve got a place to come out now. Come on, here we go. They’ve gotten quiet. We can come to them now. They have time for me. Here I come.”

Here’s how to manage ‘worry time’ effectively:

Schedule dedicated worry time: Set aside 15–30 minutes earlier in the day to process thoughts and plan for tomorrow.
Deal with it before bed: After you’ve had your worry time, those thoughts won’t come flooding back when you try to sleep.
If worries arise at night: Get out of bed and go somewhere else to think through solutions — don’t let your mind associate being in bed with problem-solving.
For minor things: Keep a small notebook by your bedside, jot them down, then go back to sleep.
For major concerns: If you’re going to be awake thinking, be awake outside of your bed. Go ahead and get up, move to another place in your room — or another room, and think about it outside your bed.

Tip 5: Keep Your Bedroom for the Three S’s

Make the bedroom the bedroom. Keep your bedroom for the three S’s: Sleep, sickness and sex.

Here’s what to avoid in the bedroom:

No phone scrolling: Avoid checking Instagram, Facebook, TikTok, or other social media when you get in bed — there are so many things to keep us awake these days.
Remove the television: Many of us have TVs in our bedrooms and might have a hard time giving it up, but try removing it for just one week and see how it goes — you can reevaluate after that.
No work or reading: Avoid doing anything that’s not one of the three S’s while in bed.
Train your brain: The goal is to connect your brain with going to bed meaning going to sleep. When you get into bed, it is meant to be the cue to sleep, not to do other activities.

Dr. Brewster has learned when you’re talking about the time you go to bed and the time you get up, and have your body associate with these, your body actually does associate “I’m going to bed, I’m going to sleep.” You can teach your body to do this.

Dr. Brewster mentioned there was someone in her study who was skeptical about giving up the TV at first. They said: “Yeah, right, I’m not doing that.” She encouraged them to try it for a week — which they did — and it transformed them. They now speak to other participants, and one of the first things they mention is the fact that they initially didn’t want to give up the television and, when they did, how much it actually improved their sleep.

Dr. Brewster explained about sleep cycles:

You go through sleep cycles, and some are lighter sleep. When you’re in a lighter sleep cycle, the television is actually interrupting your sleep.

About the SLEEPMATE Study

Dr. Brewster’s study is actively recruiting pairs. The person who is receiving the care doesn’t have to be diagnosed with dementia, just have a complaint or an experience of cognitive changes. Caregivers or care partners (Some people prefer to be identified differently based on where in the dementia journey they are), and their care receivers, both participate in the study.

Their issues could be difficulty falling asleep, difficulty staying asleep (meaning that you fall asleep and then you wake up, and when you wake up, you have a hard time falling back asleep), significant daytime sleepiness, or some other type of impairment during the day.

This study is for people who are living within the contiguous United States. As a thank you for your time and participation in the study, each participant receives an honorarium.

If you’re a caregiver to a parent, spouse, sibling, etc., have any questions, or want to find out more about the study, please select one of these options:

Click here for information on participating in Dr. Brewster’s virtual 6-week program.

2. Call the office at: 404–712–9164

3. Check out the lab’s website.

Have you learned valuable lessons that help you and/or your care receiver sleep better? Please share your experiences in the comments below or on our Facebook or Instagram pages.

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