This blog stresses over and over that not all dementias are Alzheimer’s Disease (Alzheimer’s Disease is but a single type of dementia), but the Alzheimer’s Association has been quite effective at leading most people to believe that all cognitive impairment and subsequent neurological degeneration is Alzheimer’s Disease.
Not only is this general belief false, but it is also potentially very dangerous to our loved ones with dementia.
Because each type of dementia affects different areas of the brain in different ways (the big-picture journey through dementias follows a similar trajectory), managing the symptomatic and behavioral details of each step’s progression are highly dependent on the type(s) of dementia – and what area of and how the brain is impacted – that our loved ones are experiencing.
Dementias management and care is not a one-size-fits-all proposition.
The Alzheimer’s Association has therefore, in my opinion, done a huge disservice to the general population and to caregivers and their loved ones by bombarding the world with the idea that everyone with cognitive impairment and neurological decline has Alzheimer’s Disease.
A recent long-term study discovered that a mixture of neurological changes leads to the eventual development of dementia.
Alzheimer’s Disease shrinks the size of the brain, essentially fossilizing the brain’s structure, but all the other neurological degenerative disease processes related to the development of dementia occur within the mass of the brain itself and more directly affect specific and distinct parts of cognition and behavior.
The study, which followed 1,100 people from diagnoses to death, identified five types of neurological degenerative conditions: Alzheimer’s Disease, Lewy bodies, hippocampal sclerosis, microinfarcts, and low brain weight.
What the study found is quite revealing.
While a single neurological degenerative condition could give rise to the eventual development of cognitive impairment and dementia, having more than one of these neurological degenerative conditions simultaneously not only multiplies the risk (as well as the severity of damage to the brain as a whole) of developing cognitive impairment and dementia, but also speeds up the degenerative process leading to dementia and death.
In other words, the more of these degenerative neurological conditions that coexist, the greater – and harder – the load and impact on the whole brain is and the more rapidly death occurs.
This research gives a lot of insight into why there is often so much disparity in severity and longevity of our loved ones with dementia.
My mom had vascular dementia, Lewy Body dementia, and Alzheimer’s Disease. While her cognitive function – more in areas of judgment and keeping track of things – showed some changes as she got into her mid-70’s, in general, she was able to function quite well most of the time until the last three months of 2009, when the baffling, out-of-the-blue ups and downs began in earnest, and the first half of 2010, when the declines were steep, fast, and furious.
Mama was having a lot of TIA’s (many more than I actually witnessed, I am positive, but the increase and frequency of them that I saw when I was with her seriously alarmed me) in that period of time.
I knew what TIA’s were, because Mama had experienced them all my life, but they, until that period, were relatively infrequent – although they always scared me (but I always remained calm and unruffled for Mama) from the moment they started to the 30 minutes or more until all the symptoms associated with them (aphasia was but one) were gone – and were related to her experiencing high levels of stress.
But when I saw Mama having TIA’s on a regular basis (several times a day and, at times, within an hour of each other), I knew something was very wrong.
Doing something about it – or, more specifically, guiding Mama to do something about it – was a whole other matter.
When things got so bad that I knew something – and somebody else had to do it – had to be done, I found out from Mama’s P.A. that he suspected vascular dementia (a brain scan confirmed that diagnosis). Within three months, Mama was also diagnosed with Alzheimer’s Disease. Within a month of that diagnosis, it was clear to me that she also had Lewy Body dementia.
Mama died about two and a half years after her first dementia diagnosis (in so many ways I’m very thankful that most of the worst of her journey through these degenerative neurological diseases was short, although its rapidity tested both our limits during the duration).
On the other hand, my best friend’s mom was diagnosed with Alzheimer’s Disease in 2006 and has lived, without much quality of life, to be sure, for the last few years, for almost ten years since her diagnosis.
It certainly doesn’t mean that my best friend’s mom doesn’t have comorbidity with degenerative neurological disease, but I suspect that the overall burden on her mom’s brain may be somewhat less than the overall burden on my mom’s brain.
We must constantly be educating ourselves thoroughly, diligently distinguishing fact from fiction, about these neurological degenerative conditions, diseases, and processes.
They are becoming and will continue to become (mainly because of our lifestyle choices, including deteriorating sleep habits, increasing alcohol and drug abuse, and our movement toward 24/7 addiction to technology that are significantly increasing the likelihood of their appearance and development) more prevalent and pervasive, affecting more and more of us.
We cannot afford to fail our loved ones – or ourselves – by remaining ignorant, falling for hype, and succumbing to lies from all the modern day snake oil salespeople who claim to have “cures,” but are really just looking to take a whole lot of money out of our pockets because we’re so gullible that we’ve swallowed their silver bullet promises hook, line, and sinker.
Wow, you have done a fantastic job with this post. I learned several bits of information from this post that I did not know. I truly did not know you could have more than one type of dementia at a time. I did know that Alzheimers was one of the dementias. The Alzheimer’s Association is definitely deceiving people. I know what your Mother endured had to be very hard for you to bear. They diagnosed my Mother with Alzheimers, but who knows if that was a true diagnosis. They simply said my brother had Dementia. It truly bothers you forever when you lose someone you love to any of the Dementias. A+ on this very informative post my friend.
Thank you, Liz, for your comments. As you know, my mission is to educate, to bust myths, and to give good, clear, and provable information about all types of dementia, so it’s imperative that the deceit – whether intentional or not – of the Alzheimer’s Association be exposed, especially because they get the bulk of funding from individuals and government entities for dementia research.
Excellent post! My Mom has Lewy Body Dementia and I totally agree with your comment “The Alzheimer’s Association has therefore, in my opinion, done a huge disservice to the general population and to caregivers and their loved ones by bombarding the world with the idea that everyone with cognitive impairment and neurological decline has Alzheimer’s Disease.” I have been wondering if I’m the only one who thinks that (as yours is the first I’ve read that speaks what I’ve been feeling). Hopefully more of us will follow your lead and speak up! Thank you
Thank you for you comments. What the Alzheimer’s Association has done and is doing has been a sticking point with me from day one, even in describing my mom’s dementias to people. I did enough volunteer work for a short time with the Alzheimer’s Association after Mom’s death to become aware that they do not address – nor do they allow – any other types of dementia in their training or outreach programs. And that is a travesty, in my opinion.
I am shocked and alarmed by the number of doctors and health care professionals who are unaware of Lewy Body Dementia. With all the hospital admissions my Mom had we were constantly trying to inform them of the symptoms and especially the potential fatal effect the wrong medication (ie antipsychotics) could have on someone with LBD. Very scary to say the least considering the vast number of people misdiagnosed.
I agree completely with you on this, which is why I continue this blog to try to help educate people about the scope and different types of dementia, so that they can make educated and informed choices. Primary care providers simply can’t keep up with science and research and many of them practice the same medicine they learned in medical school (they simply can’t or choose not to continue educating themselves and staying current after getting jobs, so their knowledge is limited and outdated, in many cases).