Kristen Miller shared their story and experiences with us recently and you can find our conversation below.
Good morning Kristen, we’re so happy to have you here with us and we’d love to explore your story and how you think about life and legacy and so much more. So let’s start with a question we often ask: What do you think is misunderstood about your business?
Memory Makers of the Midsouth is a 501c3 nonprofit organization that provides free programs for people living with dementia and their caregivers. I think one of the biggest misconceptions about what we do is people assume that we’re a respite service or a support group, which is not the case. People don’t realize how important it is for those living the dementia life to be able to socialize; the disease robs your memories, your ability to communicate, and severely disrupts the way you’re able to interpret the world around you. Too often it is assumed that a person with dementia can’t socialize or doesn’t understand what’s going on around them and so they get left out. They get shuttled off to memory care or a nursing home or left at home in front of the tv. What Memory Makers does through our Memory Cafe program is show people that there’s another way- we provide opportunities for those with dementia and their caregivers together for socialization that meets them where they are, that is catered to their specific needs. It lets them know they are seen, heard, and understood, regardless if the words coming out of their mouth makes sense to the rest of us. And I suppose in a way it is a form of respite. It gives everyone who comes the chance to “leave their diagnosis at the door” and just be themselves for a couple of hours among others who understand exactly what they’re going through. There is also an element of peer support as well that naturally occurs when people in the group share what they’re going through and receive encouragement from each other.
Can you briefly introduce yourself and share what makes you or your brand unique?
My name is Kristen Miller and I am the founder and Executive Director of Memory Makers of the Midsouth, a non-profit that provides free programs for those living with dementia (called The Memory Cafe), as well as free caregiver support and free community education. We exist for all those living with dementia in our community, but particularly for those living at home who might not otherwise be able to afford formal care and support, such as assisted living, memory care, or adult day care. We are part of an international coalition to expand Memory Cafes, called the Memory Cafe Alliance, which seeks to break down stigma and misconceptions about dementia while providing safe and inclusive opportunities for socialization. While every Memory Cafe around the world is unique in its offerings, our nine Memory Cafes in the Midsouth focus on therapeutic engagement, using a Montessori-based activity program. We want our participants to not only be able to socialize but also have fun doing it- every week we have a different theme that we explore through reminiscing, sensory engagement, music, games, fun facts, creative arts, and brain games. It’s amazing to hear the stories that pop up during the Memory Cafes, or to see a person who can no longer speak sing all the words to a familiar song or create a piece of art.
Great, so let’s dive into your journey a bit more. What’s a moment that really shaped how you see the world?
My earliest introduction to dementia was my great-grandmother Elsie. When I was young, she lived with my grandparents and spent most of her days lying on the couch. She didn’t know who I was, and she was pretty much a mystery to me as well. I was told things like, “she’s just old and senile”, or “she doesn’t even know she’s in the world anymore”. Eventually she was placed in a nursing home until she died. That was my only understanding of what dementia was until I began working with older adults in 2008. At that time, Alzheimer’s couldn’t be effectively diagnosed until a person died and their brain was autopsied. The only treatment at the time was the new Aricept, to help people retain memory longer. In the years that followed I gained a much broader understanding of the diseases that cause dementia through my work in various roles with older adults, became a volunteer Community Educator for the Alzheimer’s Association, and sought out education and certifications to deepen my knowledge. As my knowledge increased, so did my empathy for what life was really like for those living with dementia. And as my empathy increased, I began to notice the gaps that existed between those who could afford care and those who could not and that is when the idea for Memory Makers was born.
Was there ever a time you almost gave up?
Oh yes, many times. Running a non-profit is a work of heart that requires a lot of determination, grit, and a thick skin, as well as a willingness to work for free. There have been many times that I questioned whether I was doing the right thing, whether we were making an impact, whether I could even afford to keep going. But for every time I’ve been discouraged, I have also been encouraged. Last week I was really down because we had entered a video contest with a prize of $2500 and we didn’t win. I was very disappointed that the work that went into it went unnoticed and because we really needed the money for our community outreach efforts. However, later that same evening I sat down to check my email and saw that we had been given a $5000 grant that we didn’t even apply for this year! One of my favorite projects that we do at the Memory Cafes is around Thanksgiving when we do a group project of the things for which we are thankful. It also encourages me to hear the answers our participants give- thankful for their family, for their health, even thankful to still be alive- despite all of things their disease has taken away. It always reminds me that if they can get up and keep going every day, so can I and Memory Makers has the privilege to keep showing up for them.
I think our readers would appreciate hearing more about your values and what you think matters in life and career, etc. So our next question is along those lines. What important truth do very few people agree with you on?
One very important thing to know about people living with dementia is that they are far more aware of what’s going on around them than others realize. Too often it is assumed that they have no awareness, or no feelings about what is going on in their life, but that is absolutely not true. People living with dementia have a lot of difficulty processing stimuli and a lot of difficulty with verbal communication, so the others around them tend to think that they can’t feel a certain way when in fact they can- they just can’t verbalize it the way they used to. Then what ends up happening is the caregivers or family members make decisions for their loved one without taking into consideration how their loved one might feel; that in turn causes a lot of frustration for the loved one who communicates the only way they can, through their behavior. Then they get labeled as “agitated”, “difficult”, and “non-compliant”, which makes caregivers less likely to give positive interactions in care and leaves family members feeling embarrassed or ashamed of their loved one and not knowing how to cope. Rather than keep following this vicious cycle, if we adopt a “nothing about me without me” mentality then a lot of the negative spiral can be avoided. This concept is slowly circulating throughout the world, but we still have a tremendous way to go.
Okay, so before we go, let’s tackle one more area. What do you understand deeply that most people don’t?
I understand that the world is in a dementia crisis that is only getting exponentially bigger. Sometimes I look at the big picture and feel so helpless, that even with all of the good work that Memory Makers is doing, we’re just the little Dutch boy sticking his finger in the dike to prevent a flood. Seeing what’s on the horizon is one of the things that keeps me going, keeps making me push harder and harder to spread awareness and keep Memory Makers top of mind when so many other issues are clamoring for people’s attention. There are so many things going on in the world that it is easy to put something like dementia on the back burner, especially if you’re not living with it or caring for someone who does, but we can’t give up the fight. Now is the time to get out in front of this crisis and give people a fighting chance to reduce their personal risk factors; otherwise we’ll be looking at nearly half of those over 65 living with dementia in just 25 years.
Contact Info:
- Website: https://www.memorymakersmidsouth.org/
- Facebook: https://www.facebook.com/profile.php?id=100095249851970
Image Credits
Head shot by Linda White, FotoStories
