In continuing our conversation about Lewy Body Dementia (Dementia with Lewy Bodies) I would like to share this article I recently read about this form of dementia.
On this day 12 years ago, my Grandma Marie was diagnosed with Vascular Dementia. This launched part of my career path, motivating (and inspiring) me to take a campus ministry focus and turn it into a vocation. Living with dementia is difficult and sometimes dark, but never without a flicker of light as long as there is joy, compassion, love, and we strive for better care, a better way of life, and work towards a cure.
I am pleased to announce that I have developed two new training programs that I am introducing this summer. In addition to Understanding Dementia, Facilitation of Teepa Snow’s GEMS, and Dementia at Work, I now will offer, Engage with Dementia, and Young Ambassadors: Dementia Training for School Age Children. Below is a rundown of each training program. If you are interested in offering any of these for your company, organization, school, church, or even your family please feel free to contact me via the Contact page on this website, or email me at KLFassbender@gmail.com.
Understanding Dementia: This 45-60 minute training covers the basics of dementia, going over different forms of dementia, current statistics, briefly looking at the cost of dementia, and basic ways to work with individuals with dementia. A resources guide is provided upon completion of the training that will lead you to community and national resources. The training is fitting for any setting or group and is a classroom training. The cost of the training is $75 or Free if you are becoming a Purple Angel, or are a family.
Working with Dementia: This 45-minute training covers the specifics of how to navigate dementia relationships in the workplace, be it through clients, customers, consumers, and visitors. This training is fitting for insurance companies, the remodeling and construction industry, those in the service industry, restaurants, museums, and other places of business, and is a classroom and experiential training. The cost of the training is $50 or Free if you are becoming a Purple Angel, or are a family.
Engage with Dementia: This 2 Session, 60 minute each training covers how to become engaged creatively with dementia, how do we develop meaningful programming for those with dementia, applying creative engagement to any role be it a nurse, activities/Life Enrichment specialist, or CEO, and understanding the balance between extroverted and introverted programming and communication. This training is designed specifically for Care Communities such as Hospitals, Nursing Homes, In-Home Care providers, Assisted Living communities, as well as for museums and those seeking development of intergenerational programming. Upon completion of the training a resource guide is provided along with ongoing mentorship and consulting, and one program developed specially for the site. This is a 2 part classroom and experiential training. The cost of this training is $100.
Young Ambassadors: Dementia Training for School Age Children: This 45-minute training covers the basics of dementia presented in a way suitable for school age children. This training is designed for schools, and children’s programming organizations such as summer camps and after school care and is an experiential training. The cost of this training is $30 or Free for families.
As family and friends of someone with dementia sometimes the simplest of actions bring the greatest amount of joy. All of the programs and certifications regarding dementia serve a purpose and are greatly needed, but what is also needed is human interaction, time spent with another person. When my grandmother was in the mid-stages of Vascular Dementia she would have benefited from some of these programs, but at the time they were not available or known to us, but what was available was our time together. I have memories of my dad during his visits on Sundays bringing some type of baked good that they would enjoy together. It was simple, inexpensive, but it was taking a piece of her past (her love of baking and sharing food with family) and bringing it into her present. It was simple but brought a great amount of joy. Similarly, when I would visit, during the hour to two hours I spent with her, we would just look outside, or watch a movie on TV, there were days when we wouldn’t say much but we spent time together bringing pieces of our time before dementia into our time now.
There is a fear I often hear about from family members and friends of those with dementia, that they don’t know how to spend time with that person anymore, they don’t know how to communicate. There are training programs and certificates for that as well, but what I have often shared with them, is that one of the best ways to spend time with them is to do just that, spend time with them eating an ice cream cone, sharing a cream soda or cup of tea, or splitting a beer (if okay with current meds), watching a movie, listen to music, anything that may be a part of their past joys. The things we find joy in do not leave us the moment dementia enters our lives, it just shifts. Learn to sit in the silence with that person, enjoying each other’s company. That simple act will bring great memories and joy to their day. Speaking from my experience, once they are gone it is what you will remember far more than anything else you might do together during this time. So as I share programs and introduce you to training opportunities always remember that this exists, the simple joys of sitting with the ones we love.
By now you have read two TimeSlips stories, but I have mentioned little about what it is and how it is used. TimeSlips, as described by their website, states, “TimeSlips offers an elegantly simple revolution in elder care by infusing creativity into care relationships and systems…TimeSlips provides hope and improves well-being through creativity and meaningful connection.” I have experienced this as a Certified TimeSlips Facilitator. It is by far, one of the most successful and impactful programs I have used in every setting of dementia care.
TimeSlips started in Milwaukee, WI in 1998 by Anne Basting, and has since reached 42 states and 12 countries. It is lead by Certified TimeSlips Facilitators but is also something that family members can lead by using the Creativity Journal. This method is backed by research. Information on that research can be found on their website.
In a very simple way, TimeSlips is a method of creating stories using an image as a prompt. These images often have movement in them and are not of anyone, or any place familiar to the storyteller. This can be expanded and adapted in many different ways. I encourage you to read some of the stories shared on the website. These stories can take the storyteller many places and encourage creativity and joy. Individuals with dementia, often communicate through storytelling and using TimeSlips becomes another form of that communication. It is a way for them to share their lives, and to give to those willing to listen. When I am working with a group or individual to create a story I open it up to all kinds of prompts. Sometimes these prompts may be music, artwork, different smells, sounds, videos, and of course, photos. I make sure there is movement, and at first, does not show their home, or faces of family, friends, or themselves (I may introduce these elements later, depending on the direction we are taking and the person I am working with at the time). I start by asking a question, “What do you think of this image, dance, smell, sound?” With this single question, a story will blossom, through my asking of other questions and our conversation, the story will grow. By the time 20-30 minutes are up we have a short story that we may expand on week after week, turn into a play, a book, a new art piece, or leave it as a short story. We can share it with others, or keep it to ourselves.
As we are creating the story I mostly ask questions, but at moments I will fill in my own answers. I want this to be their story, but I also want this to be our story. When my job, our job as caregivers, is to become relational with the individual, it is important that we develop ground we can share. They have full input into how each story moves forward, and what we do with the story upon completion. One thing that I always do for the individual or group is to create a book after we have told about 10 stories. I will hand make a book using their stories and ideas as to how the book will look. They are the editors, I am the compiler. With each book, I also create an e-Book and audiobook. This can be done by simply scanning the pages of the book and exporting them into a PDF. Having an e-Book means that all will have access to reading the stories. It allows them to blow it up on a computer or mobile device (yes, many people I work with have iPads, iPhones, or other forms of technology). This PDF from can be easily read. I create the audiobook for the same reason, with an iPad and the GarageBand app (the simplest way to do this), we record the stories, create an intro and a closing, link everything together, and maybe we can add music, different voices, or I can become the voice for the stories. I often do this in short pieces as we go along, playing back the story for them at the conclusion of each time spent together.
The great beauty of this process is that through telling a story, even an imaginative story, our reality seeps into the lines and paragraphs. I have yet to have an experience where upon completion of the story, I don’t learn that a part of the story was something the individual experienced or still experiences. Through these stories, I learn about battles from WWII, farm life in Ohio, what is might be like to lose a child and a husband in one day, about what summers smelled like in Texas in the 1950s, about what it was like to ride on the wings of an airplane, or to be a teacher in rural Wisconsin. I learn about the people that impacted the person’s life, and what they loved about their life, and even about their regrets. This is information I would not have discovered outside of this method. Even with dementia, they can share their life with another. It is beautiful. It is sad. But, aside from the details of the story, it is always joyful, and specifically for me, always informative.
Timeslips is a storytelling method, but it is also a way for us to give to each other, listen to one another, and bring a meaningful moment to another person’s day, week, month, year. It connects people. It is intergenerational. It is creativity at it’s best and highest awe inspiriting moments.
A TimeSlips Story shared with permission.
EAA many years ago Allie Margaret and her pet monkey Almond attended EAA. She was scheduled to fly on the wings of the plane during the air show. Her plane was navy and gray, her hat purple. We think she was crazy and very brave for going up in the plane the way she did. Allie grew up a daredevil. She came from a farm in New London, WI and sadly was an only child. That is why she now has a pet monkey. She was not afraid of anything. She was not afraid of heights, or planes, or monkeys. The air show went splendidly, and she is looking forward to the next time she can fly on the wings. It was cold flying on that wing, but she doesn’t mind. The air was sweet, and reminders her of life with her Mother and Dad. Allie is only 30 years old. She has lots of life ahead of her.
To be a successful dementia caregiver we must live in the Both/And. The Both/And of both seeing the person who was, and seeing who the person is now. We cannot make them live fully in the present and we cannot make them become who they were before dementia, and so it becomes a Both/And. To live in the Both/And is not always easy, it requires us to think and live outside of a set box and into the fluid landscape. We need to live in the Both/And when it comes to determining care, and in our everyday interactions. We may both work to honor their wishes, and do what will provide them with the highest quality of life with the care they need. We cannot always predict the path the diagnosis will take, so what was determined before the disease advanced may no longer be safe for you or the person with dementia. We must both do what is safe, and find ways to honor the person we are caring for at the time. We need to both make sure they are properly cared for, and respect their vision for their life, always finding ways to make pieces of that life a reality. We must find ways to spend time with them that both are a part of who they were, and work for who they are now.
The short film, Fragile Storm comes to mind when thinking of the Both/And. I heard of this film several weeks ago, but only got around to watching it recently. If you have not seen it yet, please pause here to view the film. Warning: It is a little dark, and we need to remember it is still a film and that Both/And is only one layer. Viewing of this film will not hinder your ability to read on and understand.
Fragile Storm is about one caregiver who is trying his best to keep his wife’s wishes for how they will live as her disease progresses. While he is following her wishes, it is no longer safe for her to live in their home; it is no longer healthy. She is picturing herself young, yet fully in the present. She is living in the Both/And time. He is working hard through pain of both the physical and emotional, trying to keep her in their house as she wished, but their qulity of life and their saftey is gone. He is not in the Both/And of dementia caregiving. When I decided to sit and watch this 9-minute film, because of the podcast, Alzheimer’s Speaks, I knew roughly what the film would be about but was glued to my computer screen as it played. Upon the rolling of the credits, I started asking questions, thinking about my experiences as a secondary and non-medical caregiver and thinking about the caregiver’s need to live in the Both/And. Have I lived in the Both/And while in the role of caregiver? Have others around me? How would this particular situation improve if Norman was living in the Both/And, seeing and honoring who she was and her wishes, and admitting, seeing, where she is now.
Fragile Storm is only one example of the caregiver’s Both/And. It can also be present in our daily interactions regardless of a person’s stage in dementia, place of residence, or level of care. So often we want to see the person for who they were, the person before dementia, and that is good, that is needed, but it is not the full picture. Their needs have changed, their personality may have even changed, and they see the world through a very different lens. This view means that to help them reach the highest quality of life, and to remain relational with them we need to see them for who they are right now, at this very moment. We can both remember who they were, using that as a foundation, and we can see who they are today and meet them at the corner of Both/And.
P.S. I will dive deeper into Fragile Storm and my thoughts at a later date. It is a layered piece that stirs up many reactions and thoughts. If you watched the film, I would like to hear what you think of it.
How many of you are aware of Lewy Body Dementia (often referred to as LBD)? I have found, that after Alzheimer’s and Vascular Dementia, Lewy Body is the next type of dementia at people are aware of, but often know the least about it compaired to the other types of dementia. I once confused LBD with Frontotemporal Dementia myself, when I was an art therapy intern at an Adult Day Care.
Lewy Body Dementia is a type of dementia where alpha-synuclein (a protein) is deposited abnormally in the brain. These are the same protiens found in Parkinson’s, and where they are found determens whether you have LBD and/or Parkinson’s. With an estimated 1.4 million people with Lewy Body Dementia in the United States, I hardly think we can call it an uncommon disease. Depending on where you look it is listed as either the second or the third most common form of demenita. These symptoms look very similar to those of Alzheimer’s and/or Parkinson’s which leads to LBD under-diagnosed and many doctors unfamiliar with the disease. People with the diagnosis of LBD will see changes cognitively, physically, behaviorally, and with sleep, with up to two years or more before it becomes diagnosable as LBD. As with all forms of dementia having it diagnosed as soon and as accurately as possible is key. Early diagnosis will allow the individual to seek treatment and care that can aid in keeping the quality of life high and living as long as possible without becoming dependent on caregivers.
Lewy Body looks like a movement disorder. It looks like a cognitive disorder, a memory disorder. It looks like hallucinations, behavioral problems, and difficulty with complex mental actives. There are physical, behavioral, and sleep components to LBD. These symptoms will look like having trouble processing information and understanding visual language. It looks like difficulty with attention, cognition, and alertness. It looks like tremors, slow walking/difficulty walking, and stiffness in the body. It looks like visual hallucinations. It looks like a sleep disorder. It looks like depression, anxiety, agitation, delusion, paranoia. It looks like a change to one’s body’s ability to control blood pressure, temperature, and bladder and bowel function. Some of this is treatable and will help improve or sustain a quality of life, especially with an accurate and early diagnosis. Some medications may be prescribed to help with LBD, but some of those, many of those have their own risks.
And finally, as with all types of dementia, we need more doctors understanding and specializing in this area. We need more research. And we need more voices from those living with LBD to share their story, struggles, triumphs, sadness, and joy so that we as caregivers, neighbors, friends, and community members can learn, grow, and better support those with LBD and their direct caregivers.
One post cannot give you an adequate education on Lewy Body Dementia, and my goal here was simply to bring it to the table. I hope that you have a slightly better understanding of what LBD, and as we research and read more about the other forms of dementia, you can see how it is similar, and how differentiates itself. I have listed where you can find a much more eloquent and deeper description below. I invite you to take a look and further your education on Lewy Body Dementia.
Dementia with Lewy Bodies Symptoms| Signs, Symptoms, & Diagnosis. (n.d.). Retrieved June 02, 2017, from http://www.alz.org/dementia/dementia-with-lewy-bodies-symptoms.asp#about
Featured LBD Stories & Tributes. (n.d.). Retrieved June 02, 2017, from http://www.lbda.org/
In preparation for tomorrow’s Lewy Body post, I want to share with you a poem that was written by Norman McNamara who what diagnosed with Lewy Body (Bodies) Dementia at age 50. He is, in addition to the founder of the Purple Angel program, the author of the book, The Lewy Body Soldier.
Please do not Mock Us
Do not pity me because i have dementia,
Nor must you mock me because i have lived so long with it,
You would always choose to live well over not doing so, wouldn’t you ?
So why cant i do the same?
Thing is, i have no choice in the matter
I have no idea how i will be on a daily basis,
I cannot make plans for the future
The uncertainty of what the next day brings is unrelenting,
I dont know why i have lived so long with this illness
I dont know why i am still able to do what i do,
But i do the best i can do,, wouldn’t YOU ?
i am sure you would do the same,
My time with my family and friends is precious,
Yes the fear of not knowing hangs over me,
And yet, i carry on, best i can, brave face and all that,
Though I weep when my friends pass away,
Especially those who were diagnosed after me,
The guilt is all consuming and yet, and yet
Here i am, there are you, not that much we can do
Enjoy your lives in the knowledge you are special,
No need to mock me or others who live their lives under this dementia cloud,
We are no different than you, maybe just a little more grateful from day to day
I am currently back in Wisconsin, and this weekend while making a trip to Piggly Wiggly, I stood in the checkout line behind a man with dementia. As he was getting ready to pay for his watermelon and pineapple, he struggled to make the correct change and with a tone of embarrassment in his voice, stated he forgot how to count out his change. The cashier moved closer to him and helped make the correct change needed in a way that I wish we all could learn from. She was patient, transparent, she did not try to demean him, or roll her eyes while he stared at the change in his hand and struggled to figure it out. This Piggly Wiggly location is a Purple Angel. This means that their employees have gone through a training in working with dementia as it relates to a grocery store, and it was beautifully at work that afternoon. We cannot always count on our employees and the employees of the establishments we visit to know instinctively how to serve those with dementia. This woman may have known what to do, and how to engage with this person with dementia without training, but we cannot count on that. This is why having an organization like the Purple Angel can drastically change our community. It may take some effort, but it is minimal compared to the impact our collective dedication will make. I walked out of that store with my Pellegrino in hand filled with great joy when reflecting the work the PA Ambassadors are doing across the globe. The care this woman took gave me hope that someday the stigma of dementia will be erased, and the level of care for those with dementia and their caregivers will far surpass what it is today. Please, if you own a company, organization, or place of business, consider becoming a Purple Angel. If you work for one of these places, share the program with your boss and invite them to make your workplace a Purple Angel. And if you think you would like to become an Ambassador take the time to discern the role. As always, thank you to those who already have become Purple Angels! Your dedication does make a difference.
If you would like to learn more about this program go to the Purple Angel tab in the top menu bar to read more and to be directed to the Global Purple Angel website. If you have any questions feel free to comment or contact me.