Why is my loved one with dementia so tired?

Because dementia is exhausting.

We talk about kidney failure. Heart failure. Lung failure. Although it sounds harsh, dementia is brain failure. As the brain becomes more compromised, it takes more and more energy for someone with dementia to complete tasks.

I don’t mean tasks like renovating a room, fixing a car, or making a 12 course meal.

As dementia progresses, a conversation is exhausting. Watching a TV show is tiring. Watching grandkids play, a phone call, or a trip to the grocery story can sap someone’s energy for the entire day.

And here’s the thing about being tired…it doesn’t just mean you have to go lie down. It means you might be irritable or withdrawn. Or perhaps you lose your “filter” and start sayings things you regret.

Y’all know what you act like when you are tired, and it isn’t pretty. We often put people with dementia into situations that are exhausting and don’t give them an exit plan. Then we become frustrated when we don’t like their “behavior.” We think they are being “difficult.” But when we look back…did we set them up for success?

When we think about dementia, we don’t think about fatigue and exhaustion. Families are often surprised when dementia manifests in ways other than memory loss. Because dementia causes memory loss, right?

Sure, it absolutely can. However, memory loss is only piece of dementia. One of the biggest disservices we do to families affected by dementia is to not education them on other symptoms.

I often get questions from families about what is “normal” for someone who has dementia. Is it normal for someone to sleep all day and stay up at night? It is normal for someone to sleep 16 hours a day? Is it normal for someone to have nightmares, restless legs, or sleep walk?

There’s really no normal with dementia. If you know one person with dementia, you know one person with dementia.

Yet, none of these symptoms surprise me. Dementia changes sleep patterns. Some people are more restless in sleep. Some are harder to rouse. And getting a good night’s sleep is so important when a person’s has limited mental energy.

I know a man who changed his own sleep pattern to match his wife’s when her dementia progresses. She seemed to want to sleep from 4 am to noon. He started sleeping 4 am to noon. It’s a great solution…but not everyone is able to make a change like this. He was retired. Caregivers often have kids and jobs.

Sometimes naps work well for people with dementia, and it’s often useful to offer a nap at the same time of day everyday. Again, I understand this doesn’t work for everyone’s schedule. It’s also important, once a nap schedule is established, not to expect the person with dementia to visit or go on an outing during this time. If your loved one usually naps from 2-4 pm, having a visitor during that time and expecting them to converse may not be setting them up for success.

It’s frustrating to me that we are not talking more about dementia and mental energy. It’s frustrating to me that we still focus 90% of our conversations about dementia around memory loss. This harms those who live with dementia because we accuse them of being difficult or causing problems when they are showing a symptom of dementia. You wouldn’t get mad at a cancer patient for coughing, right? We don’t give people with dementia that same grace.

When it comes to energy, I try to set myself up for success. I know I have the most energy in the mid-morning and again in the evening. When I have to do something that requires a lot of focus, I work to schedule that during these times when possible. I often struggle with energy when I am dehydrated. I force myself to drink 100 ounces of water a day (and that’s a battle for me). I am working on sleep hygiene. For years I have slept with the TV on. Now I fall asleep to a “sleep story” from the Calm app. I also started wearing a mouth guard because my dentist claims that that I am grinding my teeth to a pulp as I sleep.

I am able to set myself up for success. Sometimes people with dementia need a little bit of support to do that. (Now that I think about it….a little support helps us all, right?)

Yet, we often fail to provide that support and then become frustrated with the person living with dementia. What can we do in terms of helping people with dementia preserve and use their energy wisely?

1. Offer naps and quiet rest periods during the day.
2. Set up a bedroom environment that promotes restful sleep (no TV, blackout curtains, etc.).
3. Have an exit strategy for social events, family holidays, and obligations. Don’t be afraid to leave church or family Christmas early!
4. Understand that short visits may be ideal. And sitting together quiet is fine.
5. Pick up on early signs of exhaustion— like becoming irritable or withdrawn.
6. When possible, embrace non-traditional sleep patterns and standardize them into a person’s schedule.
7. Identify signs of depleted mental energy as consequences of dementia rather than a person being difficult or giving you a hard time.
8. Share with others that limited energy is part of dementia so that they can support your loved one and help to set them up for success.