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.
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.
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.