Behavioral Changes Associated with Dementia - Part 2 - For Caregivers!

How to manage the overwhelming changes of dementia

As promised, the focus today is going to be more for all you caregivers out there. You’re my people and I’m here just for you today!

In Part 1 of this two-part series, I wrote about the many behavioral changes people with dementia may experience. I also wrote a little about how to manage your journey as a caregiver of someone going through these changes.

So, this follow-up is all about working through this with as little stress and anxiety as is humanly possible.

Stopping the Undesired Behavior

Ultimately, as a caregiver, you have two goals in this endeavor - one is to stop the behavior, which is either dangerous or annoying. The other is to do so without flying off the handle or having your own stroke.

Validate

When Dad was in the hospital, he would call home, sometimes ten times in ten minutes, begging us to come get him. It was gut wrenching.

When your loved one is exhibiting undesired behavior, something might be wrong. It could be pain, fear, hunger, boredom, frustration, loneliness, or even a side effect of medication.

Sometimes you can’t validate exactly - i.e. I wouldn’t have said, “I know you’re scared” because he wouldn’t have recognized that and he would have been angrier. So you validate in a way that lets them know they’re heard and understood, even if you are twisting the truth a little.

Photo by Soraya Irving on Unsplash

Join and Distract

Your loved one might be missing someone, like a sibling or parent, and they’re frustrated at not being able to see that person. A great way to diffuse the situation might be to sit down with them and look at photos or videos of the person they’re missing.

If you think they may be lonely, sit with them and distract them into doing something they enjoy.

The goal is to move them past the undesirable behavior into something they will enjoy, and something that might alleviate the source of the underlying problem.

Stick to a Routine

Even though they might not remember much, routines help people with dementia navigate their world. They operate on autopilot and they don’t really need to think about their next steps.

Just don’t be too tight with the routine. It should be more about the order of operations than the timing. Dad’s routine was broken when he went into the hospital and he didn’t ever get it back. It added to his confusion, I’m sure!

…Until You Can’t Stick to a Routine

At some point in the dementia journey, your loved one won’t be able to stick to a routine due to the growing limitations of this awful disease.

When this happens, you must be flexible. You have to change as your loved one changes. Dad loved to read so we got him books. He never finished one, but it was there if he wanted it.

You’ll know when the routine needs to be flexed because your loved one may become agitated or frustrated. Try to grow with their ever-changing needs and keep them involved to the best of their ability as long as you can.

If your loved one helps with tasks at home, modify how they participate as their dementia advances. If your loved one always helped with the dinner dishes, maybe you can change how it is they help. Instead of washing the dishes, maybe they can hand them to you or stand with you and hold the towel you use to dry them.

Create and Maintain a Calm Environment

For some people with dementia, inputs can come too fast and become overwhelming. As this disease progresses, they’ll take longer to process incoming information.

To help them with this, try to maintain a calm environment. Limit visitors to just a few, rather than everyone all at once. Also try to keep the noise level to a minimum, meaning don’t have the television, the vacuum, and the dishwasher all going at the same time.

At bedtime, try to discourage televisions or radios playing in the background. Try to keep a routine that helps them calm and prepare for sleep.

Remember to Speak in a Way They Understand

People with dementia need simpler sentences with fewer words so they can process incoming information more effectively. When you’re interacting with them, trying to end the undesired behavior, remember to speak in short sentences that are easy to understand. A long drawn-out explanation isn’t going to help.

Be Aware That They May Feel Embarrassed

Just because your loved one has dementia doesn’t mean he or she can’t feel embarrassed about their behavior or situation. Try to be understanding of this and avoid making things worse.

Be gentle and calm and if you’re in public or around lots of people, focus most on helping them calm down by redirecting and addressing the cause of their distress.

Look for Triggers

It’s possible that because something in their brain has changed that something in their environment may need to change as well.

We had to turn off the passwords to Dad’s phone. He simply couldn’t remember it.

For you, it may be other things.

Maybe your loved one fears falling in the shower now because he or she feels unsteady. Placing a chair or an anti-slip mat in the shower might help him feel safer again.

Shoot for Solving, Rather than Eliminating

One of the biggest fears of dementia caregivers is that their loved one will wander off and get lost. I read it all the time in the dementia caregiver group on Facebook.

But have you ever asked why your loved one wants to be outside? Do they want to go somewhere? Are they looking for someone? Do they enjoy being outside or taking walks? Do they love to garden?

While you may still want to install extra locks on your doors, you may also want to consider finding out what they want to do outside and then help them do it.

Photo by Maddi Bazzocco on Unsplash

And As For You…

There are times when you need to step away from your caregiver role and take some time for you.

I hear you - nobody can take care of your loved one like you can, and this feels selfless, but really, it’s not good for you, or for your loved one.

Is it possible that something can happen while you’re away for an hour? Of course it is. Will it be your fault? No.

Is it possible that something can happen while you go to the bathroom and leave your loved one for a minute or two? Yes, but you do that anyway because you need to.

The two are the same. You need to take care of yourself. Wearing yourself so thin that you’re exhausted half of the time and feeling overwhelmed makes you a poor caregiver.

Baby Steps!

Find someone you can trust to give you an hour or two of peace at least once a week. You need this time to regroup. If you aren’t sure of this person’s ability at first, have them come and you stay home, but away from your loved one and this perfectly adequate caregiver. This will help you build trust in their ability to address the needs of your loved one.

Once you feel more assured that they can handle the situation, take that time and go to the gym or out for coffee with a book and some noise-cancelling headphones.

At first, maybe you just do this once a week, but gradually, you could up it to two or three times a week.

Don’t think of this as selfish - think of it as necessary so you can be the best caregiver you can be.

Talk to Someone

If you truly cannot walk away, even for an hour, your anxiety might need some help. Try speaking to your doctor about it. Caregivers need help too, and asking for it doesn’t make you a lesser person. It makes you someone who is self-aware and knows when they may need some assistance.

Find Time to Do Things You Enjoy

I know that your loved one takes up a lot of your time, and when they go to bed, you’re so exhausted that you just want to lie down as well, but try to sneak in some time, either before they rise or after they lay down at night, to do something you enjoy.

I had a friend who told me about how she would sneak this time when her husband was dying of cancer. She set up a comfortable chair in a corner of their walk-in closet. She got a lamp in there and a small side table and she would go in there to read while her husband slept.

She was there if he needed her, but she found peace and quiet in that space to do something she enjoyed.

Find a Support Group

While an in-person support group is great, there are some good ones on Facebook as well. Look in your area, perhaps by reaching out to your county aging organization, and see what might be available for you.

Talking to others who are going through what you are can be so very helpful! These people also have great advice because they’ve been there, done that already.

Wrapping Up Behavioral Changes Associated with Dementia - Part 2

I hope that between Part 1 and Part 2, you’ve come to understand why these behavior changes occur and what you can do to work through them effectively for you and your loved one.

I know that between these two articles, I didn’t cover everything, and you may be facing something totally different, but hopefully these suggestions will help you strategize a way that works for you and your loved one.

This is possibly the most challenging thing you will face in your life, so understanding what’s happening and learning some tools to help you navigate is a great way to feel more in control of the situation.