Sunday, March 3, 2024

Many Masks of LBD Dementia

The old saying "Hindsight is better than foresight" is never more true than with caregiver's family or friends of loved ones with Dementia.

Current studies cite the appearance of specific behaviours as being the "keys" to diagnosing Dementia.

Many forms cannot be specifically cited or identified until there's a post mortem examination of the brain.

It doesn't matter if someone has Alzheimer's, Lewy Body, Frontal Temporal or others, they have Dementia.

We need to recognize Dementia as the next big "C" disease (Cancer). 

It's fatal, physically and emotionally draining, it's also destructive and stops life as we know it with  its needs, wants and directives.

These reports often become fixed on the decline of mental processing and bodily functions including standing, walking and incontinence as determiners of type and stage of the disease.

Are these really effective measures of Dementia's progression? 

Are we simply focusing on those areas we consider "more important" and use to determine the "level" of the progression and level of caregiving?

When are we going to recognize Dementia, especially Lewy Body Dementia, doesn't appear like Cancer often does with a lump you can feel or Heart Disease with a stroke? 

Lewy Body Dementia often masquarades.  As I wrote in the blog entry: Masks: Ever Changing Faces of Lewy Body Dementia , LBD is not always visible. 

People with LBD, in the beginning stages, to my experience, seem to be capable of adjusting their minds, are "socially conscious", even far into the progression of the disease.

They may laugh about "what they've just said" and even mix and match information that seems to go together to the "untrained" and "unfamiliar with the subject" ear and eye. 

Another observation I've had with Mom is how vacillating Lewy Body Dementia really is; behaviors were so unpredictable. 

It amazed me how caregivers at Mom's facility and especially the floor nurse, an LPN, believed we could affect her behavior or we could change it or Mom could choose to change it.

Unfortunately, these are all false beliefs about a real, medical condition that like Diabetes, Heart Disease or Cancer, cannot be controlled or adjusted through "willpower" or "determination".

The other night at a presentation, the message was conveyed by a gentleman about his wife and how she could somehow, if she just tried, control or affect actions like sitting up in her chair. 

It was his wants and needs for her to be who she's always been, not who she was becoming.

At one moment, perhaps she could. 

After a long period of time and a good day when for some reason her brain neural pathways had shifted, changed or somehow let a message "slip through", my Mom in the latest days, might make that movement or give that response we'd sought but not seen and desperately wanted to be there, to have the ability to "return" to the Mom we knew for so many years.

Like a trained animal, we reward the Advanced Dementia patient who shows us they "can" do something, hear something correctly, respond correctly, with a smile, words of encouragement and even with statements like "I knew you could do it if you tried hard enough".  


How grateful I am now realizing that with enough advancement of the Dementia this level of self satisfaction on the part of the visitor, the family member, may not truly register with the person struggling with Dementia.

Of course, there is the other belief, and one popular today, about "the right medicine" controlling and eventually eliminating the disease.

It may be more like eradicating Cancer. 

Controlled to some degree, possibly, perhaps, but the ability to eradicate may be more challenging or accomplished with some form of discovery that shifts development and progression.

You may find the causes of some and you may be able to change behaviors (smoking) or where you live (not close to where chemicals have been dumped) and therefore not get a specific Dementia (Cancer).

Unless someone determines there is one specific cause for Cancer -- possibly a genetic tendency or even lack of certain configurations/compositions -- Dementia, like Cancer, in my opinion, will be with us for many years to come.

Dementia may be seen as being prevalent in the very elderly but each passing day we're discovering, as we grow from an infant to a toddler, through adolescence and into adulthood, the vast frontier of the brain and how it is the center of the individual human universe. 

And, now we're classifying other brain diseases, Muscular Dystrophy and Parkinson's for example, into the area of Dementias.

Let's have a movement within society to be as health wary about Dementia as we are about Cancer and heart disease that affect human relationships and lifestyles.

Let's open the discussion, bring into the light, show the world we see, hear and most of all support those who are challenged with and from Dementia including the individuals and their care givers whether family or other.

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