Our Definition

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

Her Signature

My Grandma Marie’s signature is on everything I do. Well, you can argue that all of my grandparents and parents have their signature on my life as well, but when looking specifically at dementia, it is my Grandma Marie. My grandma had Vascular Dementia and lived with the disease for 6 1/2 years (a diagnosed 6 1/2 years). I always ask myself whenever I am about to develop a program, lead a training,  or sit with someone with dementia, “How would Grandma Marie need me at this moment?” For as many people on this planet with dementia, that is how many different forms the disease takes. It is easy to get swept up into the textbook explanations and medical terms, but with my grandma in mind I am always reminded that this person is not dementia, they have lived a life I do not know and have stories that far exceed what I see before me, they are a full person. With Grandma Marie’s guidance and in remembering her, I have set forth into this work. These “pages” will be filled with stories of my personal experience with dementia, but primarily filled with information that may become a resource for us, to better communicate, care for, and sit with those living with one form of the disease or another. It exists to help us learn how to become relational with each other. I seek to make sure the voices of those diagnosed with dementia are present, and that this may be your guide through an often difficult journey.

In April I went to visit an assisted living where I once worked and the phrase Bonae Memoriae fit with all that I was thinking about regarding dementia. It is the working title, and one that I hope becomes a reminder for myself, and you the reader, about what I believe to be the current running through dementia work. Of Happy Memory. A person with dementia may not remember what they ate for breakfast, or what they did an hour ago, but they will remember how they felt, and the impressions the individuals around them left. So let’s help them make it a happy one.

Thank you for coming here, reading, and hopefully sharing with me and others your own experiences, thoughts, and questions. As my knowledge of dementia grows, and as we as a society and field learn more about dementia I will make updates to any information that becomes out of date, or no longer best practice. I will share with you resources I use and have come across.  I hope to balance information learned through the lens of the artist, the creative arts therapist, the medical professional, and most importantly the person with dementia.

All of us are living with dementia, and a cure is not certain (at least not in our lifetime), but we can care, we can give, and we can learn from the millions of individuals with dementia and their caregivers.