The Roon 5 Highlights some of the inspirational creators on Roon. This week, hear from social media influencers and caregivers Rev Katie and Jeffrey Norris. You can watch all of their Roon answers here.
What was your first experience with dementia?
From Katie: My very first experience with dementia was actually just the way my mom talked about being scared of getting Alzheimer’s my whole life. My grandmother had Alzheimer’s and the care she received was terrible, so I grew up hearing about how bad dementia is.
Then in my 30’s my mom started to have trouble cooking, following conversations, and remembering recent events. She went very early for a full neurocognitive workup and was first diagnosed with memory impairment and later Lewy Body Dementia as she started having trouble with balance and walking.
Because my mom was so afraid of receiving poor care, we were sure to ask her doctors for all the resources available. All they recommended were a few support groups that scared us even further and then a few adult daycares which were also not a good match. They told us there was nothing we could do to help her and the behaviors we were seeing were “just dementia, nothing you can do about them.”
From Jeffrey: My first experience was at six years old, moving in with my grandparents and taking care of my grandmother as a family 24/7. I hadn’t heard of dementia before that and just knew that my grandma was forgetting things and getting confused a lot, and we were going to help her.
What inspired you to talk about your experience publicly?
From Katie: My mom and our family wanted to show other families who were also given no resources and told there was nothing they could do, that there was another way. People could live well with dementia if they were actually given access to dementia care education and training that worked- that maintained dignity and was based in the neurology of how the brain functions.
The only issue was that no one was teaching dementia care to families, so we brought those resources to other families.
We started talking publicly back in 2010 with just a blog sharing our experience of living in a multigenerational family and how we were caring for mom with Montessori care. Our outreach grew from there to running programs locally, starting a non-profit, writing a book, and now our work online.
From Jeffrey: For a long time I wasn’t public about my journey with dementia, but one day my mom asked me to help her make a dementia care skit video for Instagram. The video helped a lot of people, and I decided to get more involved because it was helping others. I wanted to help other families.
Tell us about an inspirational moment on your journey with dementia?
From both of us: Personally, it was when Jeffrey’s grandma helped him learn how to read.
When Jeffrey was around six years old, he started playing a game called Kingdom Hearts that had more complex reading in it than he had been used to. His grandma helped him learn to read at a new level by reading with him in the game, helping him sound out words and explaining what the words meant. She loved being able to maintain her role as a grandmother in this way.
This was huge for us because we were seeing how if we supported mom with Montessori dementia care practices, she could do more than we were told she could, she got more of her life back, and she and Jeffrey got their connection back.
Professionally, a new client came to us for a parent who for months had not showered or allowed anyone to clean their clothes. They tried all of the usual showering tips of making things more comfortable and safe, but nothing was working. We asked our client what her mother said when she refused to shower – there were a bunch of things (a lot of them yelling and mean) but one was “It’s not the right day.” We had our client ask her mom when the right day was, and apparently it was Monday because that was when she bathed as a kid. Months of refusals and no showers were fixed just by changing it to Mondays. The compassion of our client to learn more about her mom and meet her where she was inspired us.
What’s your best piece of advice for someone on the dementia journey?
Most of the dementia symptoms we see are NOT “just dementia” and nothing we can do about them. I know that is what we see in the media, but that’s because we;re not given access to dementia care practices that resolve or prevent most of the upsetting “dementia behaviors” that we see. Most of the things we see that make dementia do terrible on a daily basis- wandering, hitting, repetitive questions, fear- can be resolved. That doesn’t have to be the only experience of dementia.
What do you love about Roon?
Our favorite thing about Roon is how it has helped improve some “responsive behaviors” in clients with dementia. We have some clients who ruminate on their diagnosis, say that no doctor has explained dementia to them, and they can’t find anyone who explains what dementia is. We have used Roon for these clients as a way to show them simple and short answers from dementia professionals. Instead of saying “no one tells me anything,” they ask to “see that thing with the dementia information.”
We also love how Roon has brought so many dementia professionals and advocates in one place so people can get help quickly when they need it. And that Roon includes people living with dementia. It is essential that we always learn from lived experience- from people actually living with dementia.
