Adria Thompson created Be Light Care as a way to shed light on what can feel like a dark and scary subject: dementia. Now this speech pathologist and educator based in Corbin, Kentucky, shares her expertise primarily through short, practical videos that help make everyday moments easier for the caregivers of loved ones with dementia.
What do you say when your person with dementia asks about someone who has died? How can you visit someone with dementia when you can’t understand what they’re saying very well? Adria discusses and demonstrates the answers to questions like these in her free, 90-second videos shared on Facebook, Instagram, and TikTok.
Adria’s “micro-learning” approach has struck a nerve in the world of dementia care, as evidenced by her rapidly growing audience of over 700,000 followers. (If you’re on social media and someone you love has dementia, go follow her now and start learning how to make things better!)
We had the privilege of having a conversation with Adria about improving the lives of people with dementia and their caregivers.
Tell us about your story. When I worked as a speech-language pathologist in different long-term care communities all over Kentucky, I noticed this pattern where patients who were always labeled ‘difficult’ or ‘problematic’ — they had the common diagnosis of dementia. I was noticing their needs were slipping through the cracks, and no one knew what to do with them.
Then, my grandmother started showing signs of dementia herself. It was the culmination that professionally and personally, I needed to know more about dementia. I started diving in deep to learn everything I could, and I started Be Light Care as a consulting role. I wanted to show my expertise, so I started making videos about situations you might encounter and tips that could help. I had no expectation that anyone outside of people I knew would like it, but I started realizing pretty quickly that this was needed.
Why do we need better dementia education?
I think the most loving thing we can do for someone with dementia is educate ourselves about the condition. I am a firm believer that education and understanding is the foundation for good dementia care.
There’s a phrase in the world of dementia that’s unfortunate but true: the majority of people with dementia experience ‘Diagnose, and adios.’ They go to the doctor, they have a 10-minute session with their medical provider and are told they have Alzheimer’s, then it’s, ‘Here’s a pamphlet, get your affairs in order, and we’ll see you in a year for a checkup.’ I’ve heard that description a thousand times over the last few years.
So when someone is not given any more information other than a label and ‘go see the attorney,’ there are so many questions that are unanswered. Often the people who are the primary caregiver, they have no training, they don’t get a degree, they don’t have a job position. They are just left to figure things out for themselves.
There is such a stigma around dementia and a fear of it, so it makes it a unique topic to jump on social media and start talking about it in a confident and even positive way. It could be the first time that a person feels any kind of hope. Accessibility is really important to me because caregivers are often stretched thin in their time, so 90 seconds or less and free — it feels doable.
You talk a lot about how dementia causes the brain to change. How does learning more about that help a caregiver?
I feel like there is a need to translate the behaviors, the choices that people with dementia make, and reflect the things that are going on in their brain. An example is, maybe we see someone who has all these symptoms of dementia — they can’t keep up with their house, their hygiene and personality have changed, and from the outside there is so much evidence. But they say, ‘I’m fine, and I don’t know what you’re talking about.’ The natural way we perceive that is, that looks like denial. Denial tells us that the person could understand but is choosing not to. And the attitude we have toward people in denial is mostly frustration.
But neurologically, we can see there are certain parts of the brain that are responsible for being self-aware. Understanding ourselves and what’s going on also requires memory and is a complex cognitive process. I like to talk about anosognosia, the term for being medically unable to understand. The person does not have the capacity anymore to understand.
We can show up more compassionately then. We can turn frustration from pointing toward the person with dementia, and we can point it more toward the disease, and have compassion toward the person. We can separate what is happening in their brain versus the human we know and have loved for all these years. This can be life-changing.
What are some of the biggest misconceptions about dementia that you encounter?
A big misconception would be that care can always be done best at home. I say that because I feel like caregivers need to hear and be given permission to ask for help. Often they feel like they have to be able to do it all and know it all. It’s important to know that people with dementia benefit from being at home and in their routine, but at the end of the day, they benefit from being around others who are safe, loving, and not burnt out. Sometimes it just needs to be said that the best thing a caregiver can do is ask for help outside themselves.
There’s a statistic that caregivers of people with dementia die a lot faster than other people their own age. So caregiving is a life-threatening situation, to be honest. Specifically spouses: 40% of them die before the person they’re caring for. When someone feels that there’s no hope, no options, they have a high stress level and they are not going to the doctor for themselves or picking up their own medications — it becomes a medically dangerous situation. So, asking for help is actually a very caring thing to do.
What is something you wish you could shout from the rooftops and have everyone understand about caring for someone with dementia?
I just hope that people know that there’s always hope. When people feel like they’ve tried everything and it’s hopeless, that’s a scary place to be. I always try to encourage people, even in those moments when we’re really frustrated, we frame it as, ‘I haven’t found what works yet.’ Dementia is ever-changing. There’s always hope that you can learn something new or that another support or resource might come.
And, people with dementia can still experience joy, regardless of how severe it is. There are always moments that can be filled with joy.
By Jessica Alyea | Photos submitted
P.S. Here is another article you may be interested in: Go With The Flow: Caregiving For Someone With Dementia Might Require A Little Acting.
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