3 Areas Dementia Caregivers Should Know About

Over the years, I’ve had the chance to work with hundreds of people with dementia and their families personally on a one to one basis. 

I’ve worked with thousands in the online space through my private programs. 

And more informally, i’ve had some contact and communication with thousands more caregivers through social media- things like Facebook, TikTok, and Instagram

Over the years, I’ve started to notice some general themes on what’s made the difference between the caregivers who burn out, give up, and barely recognize themselves in the mirror. And the caregivers that somehow seem to be managing, Somehow are holding on, maybe even doing things they enjoy. 

And it’s not what you would think. Many people think the ones doing the best are the ones with more help, money, and time. And while I wished that for everyone and it would be helpful, it’s not what makes the difference. I’ve worked with people who have had all the help money and time who are struggling significantly. And some who have had really hard situations without much help money or time at all who seem to be doing about as good as possible. 

I want you to master these areas as much as possible. You may be amazing in one or two areas, but maybe need a bit more focus on another. You’ll know as you go through today’s post and be sure to stay to the end for a free gift I’ve put together for you.

If you would rather watch a video on this topic, click here.

I’ve seen both ends of the spectrum from the caregivers who have gained 40 pounds, lost touch with all friends and those who recently went on a road trip and started exercising again. 

Let’s dive into these 3 areas. But first do these 3 things, take a deep breathe, tell yourself you’ve got this.

The first area is mindset. 

This is literally what you tell yourself in your mind. And if you are human then chances are your mind is likely making things much harder without you even realizing it. Your thoughts are incredibly powerful in your life and in caregiving. 

If you have thoughts like “this is too hard.” “nothing works” “this shouldn’t be happening.” “This isn’t fair.” “He’s being manipulative” —-All very common thoughts for many caregivers, those thoughts on repeat in your head will make things so much worse. 

Because as my dementia care club members know- the formula is always working. Your thinking impacts the way you feel. So if you’re having thoughts like I mentioned, you’re likely feeling hopeless, frustrated, self-pity, and resentful. 

How do you imagine someone would show up in caregiving when they are feeling that way? Not very well. It would be hard. I mean, why would you try to find another approach or something that works if you are feeling hopeless. It doesn’t make sense. If you’re feeling hopeless, you’re likely not going to try anything new at all. Your brain will continue to show you all the ways in which nothing will work. 

And many people are going through their days with loops in their mind with these thoughts going over and over and over again, as if they are 100% true and there is nothing can be done. They don't even realizing that they have control over changing those thoughts, like I’ve shared in the Formula for Change. 

Really brirefly: A situation happens- you have a thought about that situation- that thought leads to a feeling- that feeling determines your actions, and those actions will impact the person with behavior. 

So how would you rate the quality of your thoughts on a regular basis? How do you think those are impacting yourself, how you feel, and your caregiving. Let me know in the comments below. 

It’s important we really start to focus on getting in the right mindset about caregiving because continuing to think nothing will work and focusing on all the things outside of your control will not help your caregiving situation. 

The 2nd thing that is really important for caregivers to know is the action. What are actions to take when working with the person with dementia that can help? 

You may have noticed that sometimes in your attempt to help the person with dementia, you accidentally make things worse. You try to calm them down, tell them no one is stealing their things, remind them of things they can’t do when they are unsafe, help them with staying clean, and all those things which make total sense to you  and are incredibly helpful to the person with dementia actually seem to be making things worse. 

It’s because the brain of someone with dementia is operating differently than yours. In order to best interact and approach them, especially when they are in distress, we have to learn how to see the world through their lens. 

Many people keep taking the action that makes sense in their head and that leads to more frustration and hopelessness because it’s not working. If anything, it’s hurting. 

We must understand how the disease impacts the brain and based on that come up with very specific ways to interact based on that information. AND each person is different. Not every person with dementia is the same. So generic tips and tricks you may be seeing don’t often work because you have to run the formula through your loved one’s eyes/backgrounds/experiences.  

When we don’t understand how the disease works and the actions to take based on that information, it can seem like nothing is working or improving and running you into the ground. 

Have you ever noticed that your actions have accidentally made things worse even though you were trying to help? 

Finally, Preparation. It's important that caregivers prepare as much as possible. And let’s face it, you won’t be able to anticipate or know everything that will happen in the future, but you can decide how you will talk to yourself and how you will show up in caregiving when the hard times happen. You can decide that right now.  Beating yourself up, that won’t make it easier. 

And for your current ongoing struggles and challenges, the ones that happen more than once- how can you prepare now for those things? How can you start to think about thsoe challenges in a way that will fuel a better feeling and a better action. How might you appreoach it differently? Doing the same thing over and over for a current recurring challenge doesn’t usually lead to any change. You have to change in order for that change to happen and it can happen by you taking a moment to think about how you can prepare for the next time it happens. 

Perhaps it’s even just being able to take a deep breathe and reminding yourself that you’ve gotten through these situations before. Perhaps just that little preparation can help take things down a  notch. 

Obviously, there is so much more to know abou tthese 3 areas than I can share in a short video here. But mindset-action-preparation That’s the three. In fact, that’s exactly why inside my Care Course. To learn more about my care course, click here.

Okay, which of these 3 areas do you think would make the biggest impact on your life right now? Let me know in the comments. 

I think most of us would agree caregiving is hard. But there are things that can make caregiving even morse or more of a hassle.