Tuesday, April 7, 2015

Is Dementia Inherited? Well, maybe ...if....

Pondering over an interesting or relevant topic that never seemed to appear, it suddenly hit me that I'd read in more than one place that there was evidence that there could be a predisposition to dementia.  I realize I've written about the risk factors in the past, but hadn't really looked into why dementia hits some families and not others, with the same rate of affliction.

My grandmother had Alzheimer's, and while it seemed relatively new, at the time, it was a source of bewilderment for all those involved.  Of course, there was denial, as no one in our family had, insofar as we know, had such an affliction before.  There was confusion, as well, thinking there was something no clicking or that my grandmother had a reaction to medication, a stroke, or any of a myriad of possible causes.

It really wasn't until September of 1983 that they were given a diagnosis - Alzheimer's.  At that time, it was a relatively new diagnosis, one that people had heard of but knew very little about.    Mom took this diagnosis as a scarlet 'A' upon the family.  Perhaps it was fear that she could fall into the same diagnosis, or that it meant that our family was prone to some mental defect;  this would last even into the present.

When the "odd" began to present itself to us, we began wondering what was really going on.  Our grandmother had never had hallucinations, and she was very determined; after being moved into Mom & Dad's house she would take nightly walks with her dog back to her home, being picked up on the other side of town in the middle of the night, or in the middle of Highway 26.

Mom, though, didn't have that type of energy, but the dementia was certainly there.

Mom began to cloister herself.  She began to not have the energy to continue with the bridge games, hikes, pickle ball, book groups, or even regular housework.  There was a time when she began to walk and was stricken with great pain and loss of breath just a few doors down from her home.    When I was able to get her in they performed a brain scan, but the intern stated that she showed a typical amount of brain matter for someone her age.  There was something that just didn't sit well, but I let it go.

After her diagnosis, Mom was raring to go home.  She hated St. Anthony's as it wasn't her home, and she needed the familiarity of her life.  Steadily, she began to accustom herself, but it wasn't without a fight.

While there, my cousin, daughter of Mom's cousin, Alice, came for a visit.  I thought it very kind of her.  Then, she phoned me and told me she had come to scope out the facility for her mom.  They hadn't received a diagnosis, yet, but she had begun presenting sure signs of dementia.   Later, in October/November, she had a diagnosis that mirrored Mom's.

Now, Alice was a very active woman.  She coached, she hiked, she led the active lifestyle that, even in her later years, made everyone believe she was indestructible.  And yet, there she was.  My hope was that she and Mom could be housed in the same facility as this would give them each other, but it was not to be.  Since Mom had been brought in the list grew of those wanting placement, and Alice would be number 18 on that list.  Luckily, there was someone in charge of another facility who knew Alice from all her work with the schools and church in Astoria who brought her into their memory care as quickly as possible.  This was a godsend for her family.

So, why did both suddenly become stricken?  In truth, I never saw nor heard anything about or from Alice that would trigger suspicions.  As a matter of fact, she and Mom's other cousins seemed to voice concerns about Mom in the past few years.  Mom would play tennis at the beach then need to nap.  They told me she wasn't her regular self - but we hadn't noticed anything different except age.

To add to the mix, there was our Uncle Larry, who became stricken with Parkinson's a few years back.  Mom thought this odd as there hadn't been anything in the family resembling this disease.   I always thought it may have been jostled when his head was struck while being hit by a car (this happened at Cannon Beach, OR).  He lived for several years before losing his ability to walk on his own, and then quickly degenerated until he died a few months later.

The question then lingers - did they inherit this disease?

 Is there a gene that makes one more susceptible in one's family?

We know it's not a bacteria/virus, so there wouldn't be any way to "catch it".

But  Mom and Alice had something in common:  They were both caretakers.  Uncle Larry wasn't.

Mom had cared for her mother suffering from AD and my father with emphysema.  Alice had cared for her husband and his disease until his death several years ago.  My uncle had done no caretaking in his life.

Studies demonstrate that the stress from such intense caregiving can make one more vulnerable to dementias.  The stress can take its toll on the mind weakening the immune system and creating a level of chemical interactions that can increase the odds of developing a form of dementia for the caregiver.

Also, if you have had an occurance or two in your family, you actually may be more susceptible to the condition.  

There are studies, currently being held, and others that are holding to the continuing hypothesis that some families may have a mutation or abnormal genetic "hiccup" which can make those in the families more susceptible to LBD, AD, and Parkinson's.

According to JAMA (Journal of Neurology) in September of 2012 ( The Genetics of Dementia with Lewy Bodies)  there is evidence that this may be the case.  While the literature is interesting, but clinical, the conclusion is for more studies (as the disease is still considered "newer" than AD in the research and diagnostic sense) to determine more.

For some, this can be disheartening, but for the pragmatic, it may mean they need to ensure their house is in order and they have permission to begin to live life as well as they can, no matter the outcome.

For us, and others related to us, there is that chance.  It began with one, and then Parkinson's emerged, followed by the LBD.  While none is waiting with open arms for the diagnosis, it's always better to be aware and accepting, to know and move with the tide of the condition, than to deny it and not be able to fight with the right tools.

Sources:



Alzheimer's Reading Room:  Genetic Predisposition to Alzheimer's:  10 Things You May Want To Know


Dementia Today:  Dementia and Genetics


Everyday Health.com:  The Dementia Caregiver's Risk for Dementia


JAMA Network:  The Genetics of Dementia with Lewy Bodies


Researchgate:  Genetic Predisposition in Dementia


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