LBD Social Signs

"Hindsight is better than foresight" is never more true than for caregiver's, family, 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 life challenge.

It's fatal, physically and emotionally draining.

It's destructive and stops life as we know it,

General articles and reports often become focused on the decline of mental processing citing bodily functions including standing, walking, incontinence as type or 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, seem to be capable of adjusting their minds, are "socially conscious", even far into progression of the disease.

They may laugh about "what they've just said", 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.

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 might make that movement or give that response.

We, too, desperately wanted Mom to be the person we knew, we lived with, to be there, to have the ability to "return" to the person we felt comfortable around and with.

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.

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

You see, we're far more accepting of something we "catch" changing someone's life than we are when there is a "loss" of what is perceived to be the "self' of the individual which many believe should be able to be "personally controlled".

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.

We may find the causes of some Dementias and 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 remains an ongoing challenge.

Just recently, some have started  classifying other brain diseases, Muscular Dystrophy and Parkinson's for example, into the area of Dementias. They affect the brain and that is where Dementia works so the theory is they're related  or even one and the same.

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.

YOU have the power to facilitate a change. 

Start a conversation. Volunteer to visit LTC's.

YOU hold the future in your hands.

It's your future or at least the future of someone you love.