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/
To begin, we define.
According to the Mayo Clinic, “Dementia isn’t a specific disease. Instead, dementia describes a group of symptoms affecting memory, thinking and social abilities severely enough to interfere with daily functioning. Though dementia generally involves memory loss, memory loss has different causes. So memory loss alone doesn’t mean you have dementia. Alzheimer’s disease is the most common cause of a progressive dementia in older adults, but there are a number of causes of dementia.”
Merriam-Webster defines dementia as, “ 1: a usually progressive condition (such as Alzheimer’s disease) marked by the development of multiple cognitive deficits (such as memory impairment, aphasia, and the inability to plan and initiate complex behavior) … dementia is diagnosed only when both memory and another cognitive function are each affected severely enough to interfere with a person’s ability to carry out routine daily activities. — The Journal of the American Medical Association 2: madness, insanity a fanaticism bordering on dementia.”
And the Alzheimer’s Association says this when defining dementia, “Dementia is a general term for a decline in mental ability severe enough to interfere with daily life. Memory loss is an example. Alzheimer’s is the most common type of dementia.”
When you look at the Alzheimer’s Association website they list the following as types of dementia:
- Alzheimer’s disease
- Vascular dementia
- Dementia with Lewy bodies (DLB)
- Mixed dementia
- Parkinson’s disease
- Frontotemporal dementia
- Creutzfeldt-Jakob disease
- Normal pressure hydrocephalus
- Huntington’s disease
- Wernicke-Korsakoff Syndrome
“Dementia itself is not a disease – it’s actually caused by lots of different diseases. The word ‘dementia’ is just an umbrella term for the symptoms caused by these diseases such as memory loss, confusion, and personality change. Alzheimer’s disease is the most common cause, but other dementias include vascular dementia, dementia with Lewy bodies and frontotemporal dementia.” – World Health Organization
As we read these definitions, they are blunt, medical, and negative. I am not encouraging us to ignore, or toss out these definitions, but to expand on them. Adding our own definition as it pertains to our experience as a person with dementia, a caregiver, or a loved one. These definitions talk about what a person will lose, but what about what they can still gain? Still achieve? Still give? I know from my work, that those with dementia are still learning, still teaching, are still telling us their stories, and are still helping in service of another. Their dementia does not erase the person they are, it merely places a veil over them that we as caregivers and loved ones need to see through.
As many people there are living with dementia, that is how many journeys, ways of progression, and definitions we can create. We define dementia, but it needs to be a flexible one, one that will change with our experience. I invite you to share with me your definition of dementia.
I also would like to ask you two questions:
1. What do you think what I say the word, “dementia?”
2. What is one thing (or more) that you would like to learn about dementia?
In my opinion, no one can better describe the different types of dementia than Teepa Snow. But over the next month, I will highlight different types of dementia and encourage you to pop in with your comments if you have had experience with one or more types of dementia.
Dementia | Signs, Symptoms & Diagnosis. (n.d.). Retrieved May 25, 2017, from http://www.alz.org/what-is-dementia.asp
Freitas, J. J. (2015). The dementia concept: understand, connect, engage. Massachusetts: Blue Sail.
Dementia. (2016, April 05). Retrieved May 25, 2017, from http://www.mayoclinic.org/diseases-conditions/dementia/home/ovc-20198502
Dementia. (n.d.). Retrieved May 25, 2017, from https://www.merriam- webster.com/dictionary/dementia