A passion for serving the elderly has led Kathryne Fassbender to start a dialogue about dementia to help both those living with the condition and their care partners.
At DementiaLettersProject.com, the Wisconsin resident and certified dementia communication specialist is creating the dialogue with input from care partners, family members, medical staff, and, most importantly, the individuals living with dementia.
The letters, she says, “can be (written) to dementia, to their future self who they fear might have dementia, or to a loved one with dementia. It can be expressing those fears, sharing their story of dementia, or sharing the gifts of dementia.”
Dementia is, according to CaringKind.com, the loss of cognitive functioning—thinking, remembering, and reasoning—and behavioral abilities to an extent that it interferes with a person’s daily life and activities.
“Dementia is an umbrella term that includes several different types of dementia with their own unique characteristics,” she says. “While dementia can take much away from one’s life, it does not take away their own experiences, joy, or spirit.”
Kathryne’s service to those affected by dementia started on a volunteer basis through middle-school service projects. She focused on aging.
“I was drawn into helping those with dementia first by finding that I connected well with individuals with dementia,” she says. By seeing the great misunderstanding her classmates had about the disease, she felt an even greater pull to work with those living with dementia.
Then in 2005 her grandmother was diagnosed with vascular dementia.
“Around that time not only was I experiencing dementia personally, but I was seeing how professionally it might evolve and become a professional vocation,” Kathryne says.
There is great healing through storytelling, and letter writing is a beautiful and easy form of storytelling.
She earned her undergraduate degree in art therapy at Edgewood College in Wisconsin and interned at an adult day program that focused on dementia. From there she has gone on to work as a life-enrichment specialist and now leads dementia training workshops, works as a family consultant, speaks at conferences, and, in 2017, formed the Dementia Letters Project. Besides earning her CDCS last year, she also has earned a certificate in arts and health therapy.
Kathryne attributes the start of the Dementia Letters Project to “a couple of things colliding.”
She says she was beginning to discover people with dementia like Brian LeBlanc and Kate Swaffer who write blogs and are “calling out for people to recognize them and recognize their story and that their story is not what all medical professionals are telling us.”
“It’s not all doom and gloom, it’s not all memory loss and becoming medicalized,” Kathryne says.
She also noted family members and staff at a care community saying that they had fears about dementia but were afraid to share them and needed a platform where they could do that.
The Dementia Letters Project encourages others to share their story of dementia by writing letters for submission to DementiaLettersProject.com or for sharing within their family.
“These letters can be written to dementia itself, to the individual’s future self, or to a loved one with dementia,” she says. “It can express fears and joys about their personal story of dementia.”
Kathryne emphasizes that these letters are not all about fears, such as worry about when a loved one might forget the name of their children. It is also about those moments spent together that might not have happened without dementia. The goal of the Dementia Letters Project is to build a community that is “wealthy in hope and connection” for someone with dementia as well as friends, family, and care partners. The website also includes links to resources and Kathryne’s blog.
“My hope with the Dementia Letters Project is to allow those who may not want to be a visible voice via platforms like a blog, book, or speaking engagements to still be able to share their voice,” she says. “I also want families and community members to help us deepen the reality of dementia, to share their fears, their joys, their experiences. There is great healing through storytelling, and letter writing is a beautiful and easy form of storytelling.”
Kathryne says that dementia is more than what we're reading in news articles or seeing on TV specials. It’s not only despondency; there is also joy, hope, and light—and conveying that to families and care communities has been Kathryne’s mission over the past two years.
“We need to be visionaries and servants of the Lord to individuals with dementia, despite our own fears and misunderstandings,” Kathryne says. “We have a duty to grow in knowledge about dementia and aging so that we can better minister to others.”
At the same time, Kathryne says we must not “medicalize” someone with dementia; we cannot forget to include their faith with the sudden checklist that appears with the diagnosis—making sure they eat, sleep, are dressed, and take prescribed medication. She encourages family members, friends, and care partners to ask themselves how they can make sure that their loved ones are still practicing their faith. Encouraging someone with dementia in their faith can be as simple as singing hymns with them or saying the Lord’s Prayer together—things that are ingrained in them, firmly rooted in their emotional memory.
To someone who is struggling with dementia, Kathryne says, “Your value never decreases in God’s eyes, and your ability to grow in faith never ceases.”
Kathryne spreads awareness and builds bridges by speaking at conferences. She realized there was a need for people who aren’t medical professionals but who are working with someone living with dementia to “enter the public speaking round.” She describes the medical community as being very “siloed,” especially when it comes to aging and dementia. Doctors and nurses will be in one silo and think they’re right, while academic researchers will be in their separate silo, and then those who take a more creative approach to dementia care will be in their silo.
“We need more bridges,” Kathryne says, “because we’re not really going to break the barrier of where we are right now with knowledge of dementia until we start communicating with each other and learn how to put our language into another person's language, and then be able to share that with families. That's where I am—trying to figure out that spot, that in-between spot, that can put medical research and creative aging language into layman's terms.”