Someone living with dementia may have more changes in their life beyond memory loss and forgetfulness. Although memory loss is certainly a known sign of dementia and affects other parts of the person’s life, it is not the only change to be aware of.
Understanding the other changes can be helpful in understanding the person and showing compassion versus becoming upset or taking any words or behaviors personally.
You should always consult with a doctor if this is a new change, as it could be a sign of another medical condition that needs to be addressed.
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Changes in mood
Because dementia can affect multiple parts of the brain, it may seem like it changes a person’s mood or seemingly even lead to changes in personality.
Dementias can also cause what is called “emotional lability.” Emotional lability is extreme mood swings. For example, a person may be crying one moment and then laughing the next. Many times the emotion does not really “match” the situation.
Some people may also have “flat affect” or limited expressions.
In the early stages of dementia, people may try to “mask” or cover up their memory or cognitive deficits and become increasingly frustrated or agitated because they cannot comprehend the world around them like they use to, or things that were once easy to understand are now confusing.
Saying things “out of character” or loss of a “filter”
Throughout life, we typically have a filter or way to stop things coming out of our mouths that we are actually thinking about. Our filter, or our ability to inhibit what we say, is part of the function of the frontal lobe of the brain and helps us say things that are socially appropriate. In some dementias, the frontal lobe is changed, and the person cannot inhibit, filter, or monitor what they may be saying. They may say inappropriate things that they would have never said before. This may come out as cursing, saying sexual phrases, or other statements. It is important to remember not to take it personally, as they are not necessarily trying to be mean or hurtful. They have just lost some of their control over what they are saying.
Difficulty finding the right word
Changes to the brain may result in someone having difficulty finding a word or substituting one word for another. For example, someone may say, “I need the thing for the hair” instead of the hairbrush. A person may substitute one word for another, such as “I need the bread for my hair” instead of the brush for my hair.
A “word salad” may also occur. A word salad is a bunch of words together that make it difficult for caregivers and loved ones to understand what the person wants to say or what the person means. For example, the “girl whirl went, went to the world, to eat whirl, want to whirl twirl.”
There have been times I can figure out what the person is trying to tell me. Sometimes I offer them something to understand if that is what they’re asking for. I may offer them a brush or hair tie if they want something for their hair. I may offer them something to eat or a snack if they mention the word eat. It can be very difficult to understand what someone is trying to say, so it is always good to be patient and try to offer helpful items or activities such as a drink, food, an opportunity to use the restroom, a blanket, or a sweater if they are cold, offers to go on a walk, etc.
In the later stages of dementia, people may also begin to lose their ability to speak. Trying to look at body language, facial expressions, and other gestures might be helpful to understand what the person needs or wants.
Taking longer to understand instructions
The ability to process, understand and respond to others or things in the environment may take longer for someone with dementia.
The best approach is to give someone more time to understand directions and not rush them. For example, you may want to say, “Let’s stand up,” and give them 1 minute to respond instead of saying, “Let’s stand up, let’s go, put your hand there, let’s go over here.” Every time there is a new command, it can restart the processing time, and too many commands at once can be overwhelming and confusing.
Giving short 1 step commands can be helpful to minimize confusion as well. The amount of time it takes a person to respond and the number of steps they can understand varies by the stage or severity of dementia and is unique to every individual.
Making things up that did not happen
Confabulation is when people within gaps in their memory with false or partially false information.
This is actually an adaptive mechanism of the brain, and we all do it from time to time. When we don’t remember something, our brain fills in the details of what probably happened. For example, imagine you walk in the park every day and see the same black lab. Today you were distracted by your phone while walking in the park, and when you come home, your son asks what dogs you saw in the park, and you say a black lab even though the black lab was not in the park today. You didn’t intentionally lie to your son, your brain just filled in the details with what it thinks happened.
Of course, this can be more pronounced and more severe in dementias. When someone is asked how they are doing or what they did today (which may be a question to avoid), someone may say that they rode with their late husband to the store earlier in the day. I had one patient tell me that he already rode his bike 5 miles even though physically he would not be able even to mount a bike.
Depending on the severity level and situation, it may be best not to argue and agree with them. I always said, “Oh, that’s great you got to ride your bike, “it was a great day to ride your bike,” “I hope you enjoyed your ride”, etc., and then we went about our daily routine and exercises. Telling him he couldn’t ride a bike anymore would upset him, and he wouldn’t believe me and try to argue with me. He didn’t actually have a bike to ride, and he didn’t try to wander outside to ride his bike, so it wasn’t a safety issue either. Just be aware that the person is probably not intentionally lying to you, their brain is just filling in the gaps, and they actually think that happened.
Withdrawing or avoiding activities
When it is difficult to recall how to do an activity, confusing to understand how something works, or overstimulating or overwhelming to participate, people tend to withdraw or be frustrated. It is common for very well-meaning caregivers and loved ones to try to get people to engage in activities without realizing the activities are too difficult for the person. When things are too difficult or overwhelming, people become agitated and withdraw.
The activity should be the “just right challenge” for the personal meaning it shouldn’t be too difficult, but it shouldn’t be so easy they get bored with it.
You can adapt activities to the just-right challenge to keep the person engaged and happy. For example, if someone loved baking cookies, following a recipe may be overwhelming. But, the person may still be able to mix all the ingredients and roll the dough into balls if the ingredients if measured and put in the bowl by another person first. The person may certainly need help to be successful and safe, but they can still participate in the less complicated parts of the task to enjoy it.
Changes with vision
People with dementia may start to develop progressive tunnel vision, meaning they do not see objects to the side of them and may even be startled or frightened if someone approaches them from the side or behind them. This can also lead to an increased risk of falling because they do not see objects that are coming in their path. Approaching from the front and laying needed items (plate, toothbrush, clothing items) directly in front of the person can help them be more independent.
Some people may also have difficulty perceiving what an object actually is. Changes in surfaces, like going from a light hardwood floor to a dark carpeted area, may be frightening, or they may resist stepping on the carpet because it looks like a black hole. I have experienced some people having difficulty or being frightened to step over the shower threshold or onto rugs. Minimizing transitions and obstacles where you want someone to walk can be helpful.
Changes in self-care
Poor hygiene and an unkempt appearance may be caused by forgetting to complete normal hygiene tasks or a lack of awareness of what is acceptable for typical hygiene. Additionally, not doing the laundry, cleaning, or taking medications may be because the person is physically unable to do those things or they are too confusing for the person to figure out how to do.
Showering can be especially difficult for those with dementia, but there are some tips to make it a little easier: make sure the bathroom is warm, treat it like a spa day, associate it with something the person likes (do you want to take a shower before we go out and see your friends from the congregation), use a hand-held shower, so it doesn’t spray on their head, let the person participate as much as they are able so they have more control over their environment.
Hallucinations or seeing things that are not there
Another lesser-known symptom is hallucinations or delusions; this can be especially common in Lewy Body dementia. Hallucinations are seeing things that are not there, which can lead to someone reaching for things that are not there and falling, believing they need to go get something or do something unsafe based on what they are seeing or speaking about things that are not there.
Some people may even believe something is in their hand and pin roll it. I have had varying successes taking pretend things out of people’s hands to redirect them from what they saw in their hands to make them more comfortable and able to focus on adaptive tasks such as eating.
It is always very important to contact the person’s family doctor if they are experiencing this, as it can be a symptom of other medical conditions or a medication side effect, or the doctor may have recommendations to minimize the hallucinations. Remember to never change medications on your own; always follow your doctor’s recommendations.
Changes in sleep cycles
A person’s circadian rhythm or cycle of sleep and being awake can certainly be disrupted by dementia. Wandering at night, sleeping during the day, and not wanting to get out of bed are all examples of a disrupted sleep/wake cycle. “Sundowning” is when the person becomes disoriented when the sun goes down, leading to agitation, wandering, and several other behaviors. Attempting to keep someone up during the day (discouraging really long naps), having consistent daily routines, keeping the home well-lit until before bedtime, and practicing a consistent night or before bed routine can be helpful.
Remember, everyone is unique and may experience various symptoms or levels of symptoms. Having a calm and compassionate approach and keeping consistency can be helpful in most situations. This can certainly be challenging as a caregiver, and caregivers are encouraged to seek out supportive resources. For example, the Alzheimers Association has support groups you can find here.
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Sources and Continued Reading
Alzheimer’s Society, (22 June 2022). Mental, Physical, and Speech Abilities in Later Stages of Dementia. https://www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/how-dementia-progresses/mental-and-physical-activities
John Hopkins Medicine. (n.d.). Beyond Memory Loss: How to Handle the Other Symptoms of Alzheimer’s. https://www.hopkinsmedicine.org/health/conditions-and-diseases/alzheimers-disease/beyond-memory-loss-how-to-handle-the-other-symptoms-of-alzheimers#:~:text=These%20conditions%20can%20manifest%20as,of%20the%20disease%2C%20Nelson%20says.
World Health Organization. (15 March 2023). Dementia. https://www.who.int/news-room/fact-sheets/detail/dementia