Accompanying You on Your Dementia Journey
About Kate
Educator | Speaker | Artist
My One Thing
Creative Engagement isn’t only an activities approach. It is a model (an evidenced-based model at that) used in the full picture of care. If you leave it up to the activities team to understand and use Creative Engagement, you are missing a big piece of the pie.
When we look at the person before us, we should see a full person, with dignity, with gifts to still give (yes, even in late state dementia), and with respect for what it means to them to live well in this very moment.
I view dementia like a secret garden, and our journey mirrors that of Mary Lenox in the classic novel, The Secret Garden. If we can find the key to get in, and see the beauty that still exists we can journey this road with strength, joy, and community.
Hi There!
I'm Kathryne (Kate) Fassbender
I continue to dedicate my life to accompanying those living with dementia. I believe dementia is not a death sentence, a reason to squash dignity, purpose, and joy, nor an eraser that eliminates the beauty of your life. But it is also not a reason to fear suffering, and “shush” conversations about the real trials of dementia. Whether you have the diagnosis yourself or are a care partner, I seek to walk with you through the trials and triumphs of this life. In addition to the work you see here, I am the founder of our Sister organization, The Hem of Christ, and on the Faculty of the Avila Institute of Gerontology.
I am a Midwestern heart living on the East Coast.
Born and raised in Wisconsin, I have spent my adult life living “out East.” This connection between these two creative, innovative, and leading regions of our country in aging and dementia (as well as arts and health) has allowed me to dream big, to put out into the deep, and imagine a better world for those on the dementia journey.
I am the granddaughter of someone who lived with Vascular Dementia.
My grandmother was diagnosed with Vascular Dementia when I was 16. After already volunteering in memory care since I was 11, her diagnosis made dementia real in a new way. I saw the family dynamics, and the trials as well as the triumphs. I experienced what care looked like across the spectrum, and where I wish we could have done better as a family.
Frances Hodgson Burnett, The Secret Garden
"If you look the right way, you can see that the whole world is a garden."
My Story Begins Over 20 Years Ago
My journey did not start after a loved ones was diagnosed with a form of dementia, a job (I was, after all, a 6th grader), or via a parent’s career. It came through a comment made by a classmate in my class.
In my 6th-grade science class, my peers started talking about dementia. At the time I had no clue what it really was, nor was I aware of anyone in my life who had dementia. I knew enough that when a classmate started calling it, “old timer’s disease,” the correct behavior was to be appalled. This launched my passion for working with dementia as a volunteer. In 2005, when my grandmother was diagnosed with Vascular Dementia, the story became personal. My view of dementia, as well as a greater awareness of what it means to live with dementia, drastically changed. I experienced the struggles, stereotypes, shame, joy, love, laughter, and dynamics of the family journey. The world of dementia that I had moved into continued to grow, evolve, and transformed. As I worked to make dementia my career, I recognized that I was uniquely created for this purpose.
In 2011 the Dementia Letters Project started off as a blend of Life Enrichment work and volunteering (which at the time was named, Bonae Memoriae or
“good memory”) as well as arts access. In 2015, I started the shift towards officially launching the Dementia Letters Project, becoming a dementia educator, and teaching artist.
Over the last 17 years, I have recognized the need for those living with dementia to tell their story, and for the greater community to start having a different type of conversation. There exists a longing to move away from doom and gloom and into joy. I started the project as a way to help all of us share our stories of dementia and move into that joy. As I write the current pages of the Dementia Letters Project story, I invite you to join me, to co-create a new narrative of dementia
Continuing Education Promise
Each year I seek ways to continue to grow in knowledge and understanding, both informally and formally. Above and beyond what is required to maintain any certifications I may have, I participate in monthly CE webinars, workshops, and courses hosted by universities, conferences, and other dementia-based organizations.
I also value greatly the growth that happens when we work with and listen to those living with dementia. These individuals provide an education that surpasses anything one might learn in a textbook or lecture.
