When your loved one refuses to shower, or starts sundowning, or keeps asking to go home, it’s natural to put all your attention on them and on how to change what they’re doing.
Careblazer, here are three dementia care shifts you can make right now. They can help you feel better in caregiving, have a better relationship with your loved one, and give your loved one the best care possible.
Shift #1: Focus on Difficult Dementia Situations, Not Just Behaviors
When we think about difficult dementia behaviors, we think about not wanting to shower, sundowning, wanting to go home, agitation, anger, frustration. And we put all of our attention on the person with dementia.
But when we do that, we get hyperfocused on changing them and their behavior. We stop looking at all the external factors playing into it.
Even though it might not seem this way, dementia behaviors usually aren’t happening totally out of the blue. There are usually factors in the environment that, if we could tweak and change them, could make a big difference in how the person with dementia shows up.
So whenever you’re faced with a difficult dementia behavior, which is really a difficult dementia situation, step back and ask yourself what’s at play:
- Who is around?
- What time of day was it?
- How did they sleep?
- What did they eat?
- What did they do earlier in the day, or last night?
These things might not seem like a big deal to us. They could be a big deal for the person with dementia, and they could be the very reason the behavior is happening.
Thinking this way builds the habit of being a dementia detective. And that makes it so much more likely you’ll solve the mystery of why this behavior keeps happening.
I go further into why trying to change the person keeps us stuck in the #1 mistake caregivers make with dementia behaviors.
Shift #2: Assess, Don’t Assume
This one is really important. When we assume we know what’s going on and why the person with dementia is doing what they’re doing, we stop assessing all the other possibilities. And those possibilities might be more true, and might lead to more solutions.
I once worked with a Careblazer whose mom was putting tissue boxes on her feet. She’d pull out all the tissues, throw them on the floor, and put the boxes on her feet.
This Careblazer assumed her mom was wasting tissue. And I love this example, because from most people’s perspective, that’s 100% factual. Taking clean tissues and throwing them on the floor is wasteful.
But that’s not what her mom was doing.
When we stepped back and looked at the situation, not just the behavior, and at all the factors involved, we realized her mom simply wanted something on her feet.
If we’d kept assuming she was wasting tissue, everything we did would have been about stopping the waste. Take the tissues away. Never let her have them. All of that would have made the situation much worse.
When we threw out the assumption and started asking what else this could be, what this behavior could mean, we got the answer pretty quickly.
This teaches one of the most important traits for any dementia caregiver: curiosity. It’s really hard to know what’s going on in their brain, in their world, and how they’re perceiving things. Being curious about what our loved ones are doing, instead of assuming we know, makes us much more likely to solve the difficult dementia situation.
Shift #3: Get Dementia Care Support Beyond the Doctor’s Office
This one might be hard, especially for an older generation that grew up holding what doctors and health care providers say in the highest regard.
The shift is from receiving dementia care only inside a clinic visit to being open to guidance, information and support outside of it.
A cardiologist, Dr. Lang, said it beautifully. In most doctor’s appointments there are less than five minutes, often less than one minute, for all the teaching. So if you come in with a diagnosis, there may be five minutes to teach you about everything. You’re never going to have all your questions answered. And people forget as much as 40 to 80 percent of what their doctor tells them almost right away.
Have you ever left an appointment feeling rushed, more confused, or with more questions than answers? That’s what I’m talking about.
There’s no way that five minutes of questions, at appointments four or six months apart, is going to be enough. You’re going to have to take matters into your own hands.
A report from the Alzheimer’s Association found:
- 82% of primary care physicians say they are on the front lines of providing dementia care.
- Nearly 2 in 5 (39%) are never or only sometimes comfortable making a dementia diagnosis.
- 27% are never or only sometimes comfortable answering questions about Alzheimer’s and other dementias.
- 22% had no residency training in dementia diagnosis and care. Of those who did, 65% said it was very little.
Doctors are important. Please keep going to your appointments and health care visits. It’s extremely important.
But if that’s the only thing you rely on, you’ll be at a significant disadvantage, and you’ll struggle more than you need to.
If you want the most out of the few minutes you do get, I walk through it in preparing for the next doctor’s appointment, and I share what I wish providers understood in 3 things I wish every doctor understood about dementia caregiving.
How to Choose Trustworthy Dementia Resources
Turn to trustworthy resources. This YouTube channel is a great place to be. The Alzheimer’s Association website is a great place to be.
Be mindful that the information you’re getting comes from a trustworthy source, and that you don’t overwhelm yourself.
As more people get dementia, more and more people are coming into the field to help, which is a wonderful thing. But when we follow too many people and take in information from all these different sources, it can become its own source of overwhelm. Who do I follow? This person said something different…
Choose one or two, maybe three, really great sources and get your information from them. When you feel you’ve graduated from someone, or you’re looking for a different perspective, you can move on to somebody else.
Dementia Care Is in Your Control
The big message here is that so much of dementia care is in your control. Take that control. You can do this. It can be easier.
If you want more hands-on support outside the clinic walls, that’s what the Care Collective is for. We have weekly support rooms, regular question and answer sessions, and a private member area where you can connect with other Careblazers in similar situations, any time of day. You can learn more here.
