Adria Thompson is a dementia consultant, certified dementia practitioner and founder of Be Light Care Consulting. She also provides regular tips for caring for a loved one with memory care on Instagram and TikTok.
This is Part 2 of our interview with her – be sure to read Part 1 as well!
When you’re working with families, how do you balance the day-to-day tips and tricks with bigger picture questions they might have about dementia?
Adria Thompson: “It’s important to me to gauge caregivers on what they feel or what expectations they have. When I do consultations with people, I always ask permission to talk to them about what’s to come, because there are some caregivers who don’t want to know.
We often talk about the stages of dementia in my consultations, and they’ll explain to me where they think their mom is at. I will present them a stage that seems like where they are and they’ll confirm yes or no, if that kind of fits for them. And I always say, do you want me to show you the next stage? And some people say, ‘absolutely, I want to know what comes next’. And there have been many people who said, ‘No, I don’t want to know’, and I think that’s totally fine.
I think that caregivers need to understand and take the time to consider what their boundaries are. I think that we all need to be aware of what we can handle because the truth is we need what we need for today. That’s a need. But other times, knowing what could happen in the future may not be relevant to today, and that’s okay.
I think that I provide all kinds of information and I allow my followers to pick and choose what they want to see. And I always tell them, not everything that I make a video about is going to be relevant to your journey.”
As a dementia practitioner, how do you balance respecting their wishes about not wanting to know the future, while still wanting to prepare them for what may come next?
AT: “In that situation, I always provide them with information about people who need to be part of their team. So for example, in Huntington’s disease, which is a more rare type of dementia, swallowing problems are pretty much guaranteed to happen in the later stages of that disease. And if I’m talking to someone who’s caring for someone in the mild stages of Huntington’s disease, then I might in my mind say, okay, they need to know to look for swallowing problems because it’s going to happen, and early intervention is really important. But if they communicate to me that if it’s not happening right now, they don’t want to talk about it, then I recommend that they ask for a referral for a speech language pathologist to be part of their care team so that I know they’re going to be supported, that they’re going to have people in their life who are going to provide them that information when it is relevant.
I think that a lot of times we talk about support when it comes to caregiving. And we think about support groups, right? Other people who are going through what we’re going through. But it’s more than just that, we need to have medical professionals in our circle that may not be providing treatment every single day or interacting with us weekly, but we just need to make those connections in the community so that we have people that we can reach out to when problems arise.”
What is something about dementia that you wish more people knew or understood?
AT: “When we think about someone having dementia, we assume that they’re forgetful. But the biggest thing is that dementia has many symptoms and because there’s many types of dementia, someone can have dementia without having any problems with their memory.
People with frontotemporal dementia have changes in personality. They might start gambling when that was never an issue for them before. They might start drinking excessively. They might be vulnerable to scams and people stealing their money who call them on the phone and say it’s their grandson.
So these more rare types of dementia that have symptoms that are not memory loss are often misdiagnosed and completely overlooked as mom or dad just being ornery or difficult, or just getting older and cranky when really it’s a sign of brain disease. That’s what I want to go get across more than anything in my content is that dementia is not always a memory issue, so we need to be able to identify it when we see it.”