When I say dementia, many people equate the term with memory loss and only memory loss. In reality, dementia is about so much more than memory.

If you read my blog every week, I apologize for sounding like a broken record. (Is that an analogy that young people even understand anymore?)

Today we’re going to talk dementia and sleep.

I don’t care who you are; you function better when you sleep better. I could reference hundreds of research articles, but you know it’s true. Not getting good rest makes everything harder. When we don’t sleep well, our brains fail us.

Example: I woke up at 3:30 am last Wednesday. During the day I put a paper plate in the sink to be washed instead of throwing it away. Then I sent an email to a student and signed it “Elaane.” Yes, I misspelled my own name.

And, in an embarrassing professor moment, I entered a 2000 in my gradebook when it should have been a 20. I’m sure my student was disappointed I caught this after I noticed they were sitting at 1052% in the course.

At work, someone asked me how I was. I responded that I was hungry.

After a pause, I said, “Oh, not hungry. I mean, tired. I’m tired.”

I was so tired that I got the words hungry and tired mixed up.

Our brains work better when we get adequate and restful sleep. This is even more true for a brain that is already compromised by dementia. Also, the dementia brain tires more quickly than a brain not affected by dementia. This is why people with dementia may sleep more than they used to.

But getting restful sleep can be challenging for some people living with dementia. This can be due to dementia itself, but sleep issues can also be caused and exacerbated by other factors such as medications and co-existing medical conditions.

If sleep habits change suddenly for someone with dementia, this could be a result of pain that the person has difficult expressing. In addition, changes in sleep may be a result of anxiety and depression that accompany dementia.

I find that sleep issues are particularly challenging for a couple of reasons: 1) When sleep goes downhill, other dementia symptoms tend to rear their ugly heads, and 2) It is rarely only the sleep of the person living with dementia that is affected (you know what I’m talking about, caregivers).

A couple years ago, I was invited to visit a dementia caregiver support group. A man whose wife had Alzheimer’s was talking about how much she slept. He estimated she probably slept about 16 hours a day. She slept through the grandkids’ visits and through her favorite TV shows. She was often difficult to rouse, and he often checked to see if she was still breathing.

Another man in the group was also an Alzheimer’s caregiver to this wife. Upon hearing the other guy’s description of how much his wife slept, he chimed in about his own wife’s sleep changes–which were the exact opposite.

“I don’t think your wife has Alzheimer’s,” he said. “People with Alzheimer’s have trouble sleeping. My wife is up all night wandering around the house. Alzheimer’s makes it so you can’t sleep.”

Other group members started sharing their own experiences. Their loved ones slept a lot…or a little. They slept so soundly that they couldn’t be woken up, or they slept so lightly that they woke up every hour during the night. Some had night terrors. Some were sleep walkers. Some slept odd hours–wanting to be in a bed all day but roaming around the house at night.

Every single person in the group had noticed that their loved one’s sleep had changed in some way.

As I often say, dementia is about change.

This applies to sleep. Someone with dementia may experience changes in sleep pattern and quality. And I can’t predict how dementia will impact a person’s sleep.

So, as crazy as it sounds, sleeping more is a symptom of dementia, as is sleeping less. Restless sleeping is a symptom of dementia, as is a sleep so deep that one can’t be roused.

There are some generic tips to try to keep sleep patterns “normal.” Bright light or outdoor exposure during the day. Keeping the environment dark and quiet at night. Making sure days include activities so individuals living with dementia are tired at night. Establishing a routine before bed and upon waking in the morning.

To be fair, these are the same sleep tips given to anyone with sleep issues–not just those with dementia. In fact, I go through this list when I’m struggling with insomnia.

Sometimes these strategies just don’t work. This is a tough one for caregivers who live with their loved one. There is nothing inherently awful about someone with dementia having an adjusted sleep schedule where they are up most of the night and sleep during the day, but if you’re a caregiver and have to get up in the morning for your job after being up all night making sure your loved one doesn’t wander out the front door, you are probably not thriving at your job. Or your life.

Someone I know had to reluctantly choose a nursing home for their mother not because of her memory issues but because her sleep schedule was so erratic that the rest of the family was exhausted. In fact, sleep issues are a common reason for a family to have to consider a memory care community or nursing home as an option.

Another person I know started paying $300 a week for a night “companion” for her father. She said she was buying herself a good night’s sleep, and it was the best money she ever spent. (Understandably, this isn’t an option for everyone. Money makes life with dementia just a little bit easier.)

A man who came to an educational seminar I was speaking at this summer told me that his wife had been diagnosed with frontotemporal dementia and experienced significant changes in her sleep pattern. She started staying up later and later. He tried to convince her to come to bed when he did, but she refused. Her “new normal” included a bedtime of about 4 am with a wake-up time of about noon. I asked how he was doing with this.

He explained that he was retired, and he wasn’t on much of a schedule, so he adjusted their lives to meet the sleep schedule that she preferred. They ate breakfast at 1 pm and dinner at midnight. He’d even subscribed to Netflix so he could watch his favorite shows during the night when nothing was on TV. If people wanted to visit before noon, he said no. He shifted his schedule to meet hers.

I commended him. If you can accommodate the sleep schedule that the person with dementia prefers, go for it.

However, I understand that this isn’t a possibility for most people. Dementia exists in the context of our lives, and many caregivers have jobs or children in the home. It is not surprising that caregivers are frequently sleep deprived. And you can only live with sleep deprivation for so long until your health becomes compromised.

Dementia is responsible not only for changes in sleep pattern but also an increase in disordered sleep.

There’s a type of dementia, Lewy Body Dementia (LBD), that makes people especially prone to sleep issues. Many people with LBD have something called REM sleep behavior disorder.

Typically, while people are in REM sleep, their body experiences temporary paralysis. It sounds scary, but it’s actually a good thing. Your body stays still, in your bed and tucked safety under your covers, as you dream.

If you have REM sleep disorder (which many people with LBD and other types of dementia do), your brain doesn’t effectively paralyze your body. You act out your dreams, and many of these dreams are dramatic and violent.

Someone might talk, scream, and thrash around in their sleep, not only disrupting their own sleep but the sleep of others in the house. In some cases, the person might become violent or even leave the house on foot or in a vehicle.

I know someone with dementia who got up in the middle of the night and laid out all the kitchen knives on the counter. She then called 911 and told the dispatcher that there was intruder in her bathroom. She didn’t remember any of this in the morning. I also know of a man with dementia who was getting a gun out of his safe at 2 a.m. when his son intervened.

These experiences can be terrifying for those who live with someone who has dementia, but they are also terrifying for the person living with dementia.

It’s important we get past memory loss when we talk about dementia.

We aren’t supporting individuals living with dementia and their support teams until we acknowledge the various types of challenges they must face everyday.

And every night.