3 Things Dementia Care Gets Completely Backwards

0:00Careblazer, the majority of dementia care gets three things backwards. One, most of the attention goes to the person with dementia. Almost none of dementia goes to the person with dementia. We wait for a crisis. We wait for the behavior. Then we hand out maybe a pamphlet about triggers that we could have prevented in the first place. And three, even when we do focus on the behaviors, and yeah, behavior tips and strategies, they are important. They are great. I talk about them a lot. But we almost treat the behaviors like a checklist problem. And we ignore the fact that all of these behaviors also come with a grief problem.

0:54The family member having to watch this happen to their loved ones. Careblazer, real quick. If you learn better by watching things, then you can hop on over to my YouTube channel where I post these podcasts in video format, sometimes have different visuals to help people learn even better. You can just type in Care Blazers into YouTube and I will pop up. All right, let's get back to today's podcast. So let's talk about the first thing first. One, almost all of the attention is on the person with dementia, not the person caring for them. So when your loved one with dementia gets diagnosed, the appointments, they're all about your loved one.

1:31The follow-ups focused on your loved one. The care plan focused on your loved one, which of course needs to happen. But what about you? You maybe get a pamphlet about the stages of dementia. Maybe you're told, make sure you're following up with your own medical provider. But here you are, the one making sure they get to the appointment, sitting there with them in their appointment, administering their medications, managing the behaviors that they're having, losing your own sleep, often feeling like you're losing yourself as a person, and yet somehow you are an afterthought. I believe wholeheartedly that great dementia care has to treat the caregiver too.

2:18Not as an assistant, not as a bystander, not as somebody whose job is just there to help implement the care plan. No, as a person whose health is also on the line. And when the caregiver's health is on the line and we are ignoring it, it means the person with dementia's health is also on the line. Number two, we are so reactive. The entire system waits for something to go wrong before it really teaches you anything. Nobody sits you down in the very early stages to say, here's how you can structure your environment so that we can avoid as many triggers as possible. Nobody says, here's what you can do right now, today, to reduce the odds of future behaviors happening, to help reduce how quickly this disease can decline.

3:14Or here's what you can do to make sure you're setting up your environment and your assets and your finances and everything as safe as possible. Instead, we get taught after the crisis, after the wandering has happened, after the outburst, after you are already exhausted and scared, and now you're picking up the phone to try to get some help. And so we're putting out a big fire rather than a small little brush fire that we can get ahead of time or prevent it from starting altogether. Prevention should be a first conversation, not an afterthought. And when it comes to dementia, absolutely every single person with dementia is different.

3:54However, there are so many common struggles and challenges and situations that every family is going to face. Every family is going to face some sort of strange, confusing behavior. Every family is going to face the hardship overwhelm on the caregiver. Every family is going to face safety concerns as their loved one's needs change. We should be educating on all of those things right up front rather than waiting for them to get worse. And the thing is, this is on us too, Careblazer. Sometimes we have the thought, oh, I don't need the help or I don't need the support. Things aren't that bad yet.

4:34Why are we waiting for things to be bad? Why are we waiting for those crises to happen or for the strange, confusing outbursts or behavior to happen before we sit down and learn what to do. It's like a pilot saying, I don't need to know how to respond in an emergency. I'll wait for the malfunction in the plane to happen and then I'll learn what to do. No, they go through hours and hours of training so that when that situation happens, if it ever does, they've got the game plan. That is something we can do as well as Careblazers. And number three, the one, of course, I think matters the most as a psychologist is that even the best behavior advice, the, you know, make sure you connect with them before you try to redirect them.

5:19Make sure you are assessing the situation before you assume you know what's happening. The make sure you are not arguing, not reasoning, and that you are listening. All of that great advice, none of that actually touches what is actually happening to you, the person implementing it. If you were to have all of the greatest behavior strategies in the world, which you can very soon have in your hands because my book, The Dementia Care Toolkit, is filled with all of those strategies. It's available for pre-order right now. So if you haven't yet pre-ordered it, get it. While all of that is great, it doesn't hold a candle to the pain, the sadness, the grief, the loss that happens to you, the careblazer, as you are the one watching your loved one go through these changes.

6:10As you, the careblazer, are the one having to figure out how to respond. And even if you're doing it wonderfully, there's still so much emotional pain underneath it, which is also why my book coming out talks about the emotional pain. It has a whole section on strategies for the actual person with dementia, but it also has an entire section on strategies for you, the care blazer, and how to cope with all of the emotions that come along this caregiving journey. Because like I've said, great dementia care is not just about the person with dementia. It's also about you. So when other people from the outside are looking in and they're trying to figure out like why dementia care seems so hard, why you seem to be struggling so much or so burned out or having a hard time, it's not because you're not trying.

7:03It's not necessarily even because you don't know what to do. It's because this entire system was built backwards. We wait for you to struggle before we give you the help. We have grown up in a society where until something is really wrong, we don't even go and get the help. We are not helping talk about what happens internally, that even when you are handling all of the outside situations great, it changes how we feel on the inside. Our whole worlds get surrounded by dementia care. We lose who we are. We lose our relationships. We lose our hobbies. Sometimes we lose our friendships as they start to go by the wayside.

7:44And we don't talk and address about that nearly enough. So Careblazer, what do you think? Which of these three kind of backwards ways of thinking do you think has been impacting your situation? And if you think it'd be helpful, pre-order the book. But also, if you're really looking for the conversations, the connections, the week after week place where you can come and get help, guidance, support from myself, from other experts, from other Careblazers, look into our Care Collective program. You absolutely have nothing to lose. And most importantly, we don't have to wait for things to get worse.

8:21We can do something right now. All right. I'm sending you all so much love. Bye.