Behavioral Changes Associated with Dementia - Part 1

How do things change and why?

There are many behavioral changes that occur as dementia progresses. I have two reasons for sharing these. The first is so that you can understand what’s happening and the second is so you know you aren’t alone.

What Changes Can You Expect?

If you’ve been reading along or doing your own research, you know that dementia is the result of brain cells dying - at it’s most basic form anyway. It only makes sense that things are going to change, right?

To keep this article shorter, I’m going to briefly skim these ideas now, then dig into each of them more over the next few days in notes. We’ll see how everyone likes that :)

Problems with Impulse Control

If your loved one experiences the death of cells in the prefrontal cortex, they may have problems with impulse control. This means that people with Alzheimer’s Disease and frontotemporal dementia are likely to exhibit these signs.

With impulse control problems, someone with dementia may:

• Make hasty decisions

• Act on sudden urges

• Do things that are out of character

• Use poor judgement

Behaviors might include gambling, taking their clothes off, shoplifting, and interrupting conversations. Obviously, some impulsive behaviors are more harmful than others.

How can you manage these behaviors?

• Try to stay as calm as you can - I know it can be very challenging and if you don’t, please give yourself grace…you’re only human

• Alter the environment to provide a safer space - like password protecting their computers, phones, or iPads to restrict their access to certain websites, or putting extra locks on doors so they stay safely at home

• Try to redirect your loved one when they’re behaving in a difficult way - that’s one of the good things about dementia - if there are any good things - you can redirect them and they’ll usually forget what they were going on about

• Speak with their doctor and see if there are underlying reasons for the behaviors or medications to help

Photo by Bruno Martins on Unsplash

Lower Threshold for Stress

As the brain deteriorates, someone with dementia has decreased brain energy to adjust to and process things like pain, fatigue, or environmental stimuli.

Their threshold for feeling overwhelmed is lowered as a result of this decreased brain energy. You know how you feel when you’re overwhelmed, but you have the tools to manage it better than someone with dementia. They’re more likely to lash out or start screaming because it’s the only way they can articulate what they’re feeling.

Of course, this doesn’t help you one bit - to have someone screaming - but one of you must remain calm and unfortunately for you, you’re it.

The problem with stress and dementia is that it forms an ugly cycle. Living with dementia can cause stress and anxiety, but the more stress and anxiety a person with dementia experiences, the more their dementia can advance, and it goes on and on. More on that another day.

Moodiness

With the stress, anxiety, and depression that some people with dementia experience, they may also go through mood changes. To me, this feels like a natural result of those changes.

Your loved one is stressed, so they’re a little cranky, and depending on how well they can tell you what they’re feeling, they may become frustrated as a result.

Being Socially Inappropriate

People with dementia tend to say what they’re thinking. My grandmother told my mother once that she was putting on weight, which I don’t think she was. There’s no filter whatsoever.

They may also call out in restaurants or other public environments inappropriately wanting their needs to be met.

Becoming Paranoid and Suspicious

People with dementia have trouble comprehending incoming information. This can cause them to feel paranoid and suspicious of what’s going on in their lives. Being afraid someone is stealing their money is common.

You have to see it from their eyes. They may not recognize anyone, so everyone is a stranger. Imagine living every waking moment around strangers. I’d be paranoid and suspicious too!

Repeating Things

This might be repeating questions or behaviors, or it can show up as repeating certain tasks, like sweeping or cleaning the kitchen.

For us, probably the most annoying was that Dad got fixated on Pat Sajak retiring, so every night after dinner for three or more months - and sadly, that’s not an exaggeration - he asked, “So, are Pat and Vanna retiring?”

Photo by Jayden Brand on Unsplash

Restlessness and Wandering

Dad had arthritis in his back and neck, so he wasn’t a wanderer, and he wasn’t restless until he thought his catheter was a radio, but many people with dementia experience this, and it can be exhausting to their caregiver.

This is common in later stages of dementia. There was a woman in his memory care unit who just wandered all day. Sometimes, she carried a baby doll with her. She would wander into rooms and move things around. I watched her carry a silk rose in a pot into the room of two brothers. Nobody seemed to notice but me.

Disrupted Sleep Patterns

Some people with dementia don’t sleep very well, if at all. They might fall asleep, only to awaken an hour or two later, or they may have difficulty getting to sleep. Some wake early. Dad slept all of the time.

Difficulty with Personal Hygiene

Someone with dementia might slowly become unable to perform some of the basic tasks associated with personal hygiene. Our problem, however, was that Dad would think he’d just done that and there was no telling him otherwise.

His was strictly not remembering, but others may become physically unable.

Unusual Sexual Behavior

I’ve read stories of fathers propositioning their caregivers - their daughters - and the daughter being horrified. This isn’t your father - it’s the disease.

My great grandmother thought that one of her sons-in-law was wanting to make looooovvvve to her (she was from Kentucky - that was my poor attempt) right after his wife died of breast cancer.

How Can You Manage These Changes?

What can you do to maintain your sanity and manage these behavioral changes as they creep into your life? I have a few today, and more in Part 2.

You must first remember a few things:

• Because of his or her dementia, your loved one isn’t able to learn new things, or maybe even reason things out

• This is the disease, not your loved one, causing the undesirable behavior

• There is likely an underlying cause for this change, and that’s where you should focus your energy

• Yelling at your loved one won’t solve anything, but it’ll make you feel really crappy later

• Your loved one might not be able to tell you exactly what’s wrong

Next, let’s look at how you might be able to diffuse the situation and evaluate what may be going on.

First, maintain calm. If you need to step back for a few beats to count to ten and take a few deep breaths, do it. Only one of you needs to be out of control. It’s also very challenging to think rationally when you’re overly emotional.

Back away from aggressive behavior. There is no reason to put yourself in harms way if your loved one is being aggressive. Allow them to calm down before you approach again.

Don’t try to reason with them. Remember, their dementia has stolen their ability to reason things out. All you’re going to do is inflame the situation more.

Next, consider some potential causes for this behavior:

• Hunger

• Pain

• Boredom

• Loneliness

• Frustration

• Medication side effects

And last, but not least, respond to the emotion, not the behavior. Uncover what emotion they’re feeling - fear, anxiety, maybe even excited, and address that instead.

Okay, so there’s one more - check in with the doctor. Elderly people get UTI’s and often have no symptoms, other than behavior changes. It’s possible your loved one needs an antibiotic or maybe an anxiety medication to help them.

Wrapping Up Behavior Changes - Part 1

In Part 2, we’re going to dig into more ways to manage behavior changes.

The big takeaway from today’s article is that this is the disease, and not your loved one, causing these changes.

I’ve read stories about many people describing their loved one’s changes, and those who’ve been there always say, it’s the disease, not your loved one, and the caregiver will often come back with they were like this before the disease.

Sometimes, dementia can accelerate aggressive and negative behaviors in someone who was already exhibiting them, and in some cases, someone who was once calm can become aggressive.

It’s the disease. Try to be patient, and when you find yourself slipping off of the patience cliff, grab back on, give yourself some grace, and try again!

What behavior changes have you noticed in your loved one? Share with us how you managed them, so we can all learn from your experience!