Diagnosing Dementia too early can be dangerous.
For over a century, dementia could only be diagnosed after autopsy. This left millions of people with dementia and their families confused and uncertain as to what was going on. Today, thanks to the advancements in research, people can receive a nearly accurate diagnosis of the type of dementia they have.
- Today, families are able to learn why their peaceful family member is having sudden outbursts (characteristic of frontotemporal lobe dementia).
- Family members can better deal better with one who keeps repeating the same question over and over again (characteristic of Alzheimer’s).
- Advances in research help families deal with their loved ones’ nightmares (characteristic of Lewy body dementia).
In 2011, new guidelines for diagnosing Alzheimer’s disease were released, spearheaded by Alzheimer’s Association, with the National Institutes of Health and the National Institute on Aging,
The guidelines expanded the scope of Alzheimer’s to include two earlier phases of the disease:
- presymptomatic
- mildly symptomatic but pre-dementia
- dementia caused by Alzheimer’s
Adding these two earlier phases presents a double-edged sword.
On the one hand, people will receive a diagnosis and can begin treatment.
On the other, the diagnosis can be wrong and the treatment will do more harm than good.
For example, although amyloid plaques have long been an indicator of Alzheimer’s, amyloid appears in the brains of those who showed no symptoms while alive. Additionally, those mistakenly diagnosed with then treated for Alzheimer’s may experience delusions until they are diagnosed correctly with another type of dementia, such as Lewy bodies.
On the surface, knowing what disease we have allows us to plan. However, despite advances in research, it’s still hard to delineate what type of dementia a loved one has until the symptoms make it more evident.
But, what if…?
- What if you were diagnosed with presymptomatic Alzheimer’s…would such a diagnosis change the way you live your life?
- What if early testing showed that you had the bio-markers for Alzheimer’s?
- What if the symptoms never surfaced during your lifetime?
For more information click to read: Alzheimer’s risk before symptoms: Do you want to know? by Elizabeth Landau, CNN November 9, 2013
In my experience, people feel strongly one way or another. Please post your comments below so that we may learn from one another.
I believe the earlier the better. Even if it may not be actually correct one is able to start the process of living with what possibly lies ahead. The real problem is in the world of medicine, it was once said, “That is wonderful what doctors know, it is what they don’t know will KILL you.”
I went to long with BS diagnosis that it was not funny. Today I think we have a little better handle on things, not much. It really does not matter the type of dementia, they all lead down the same road to the same end. Knowing you have the markers or the genes is like saying California is going to slide into the ocean. Anyone that knows physics knows that the pressure from the ocean in a huuuuuge quake will make us a mountain range. So that being said all else aside just live your life and wait until your bridge comes to cross it. If you have doubts about your diagnosis, it is up to you to proceed and get other opinions and tests that maybe available. My suggestion is to find the best you can in the field.
You paint vivid imagery, Joseph and with the credibility of a man who lives with dementia.
So, another mountain to climb should we get a big enough earthquake, huh? 😉
I believe by not diagnosing early as possible strictly hinders the quality of life of the person who may have Dementia. there is so much to do and can be done after diagnosis and most of it will create a peace of mind for both the person and the relevant family xxxxxxxxxxxxxx
Norrms, you were one of the people I thought of when I wrote this article, because for so long you were diagnosed with Alzheimer’s before receiving a diagnosis of Lewy body dementia (LBD). What concerns me is treating one for Alzheimer’s due to a prematurely inaccurate diagnosis may result in more harm when one is later diagnosed with LBD.
I always believe in giving the patient full information. That said, such info should come with appropriate caveats about the full range of possible outcomes and, of course, what precautionary steps may be in order. That way, the patient and/or caregivers can discuss and reach more informed decisions.
Jay, I agree. Your second sentence is where medical professionals need to take the time, in order to allow families to reach more informed decisions as you note in your third sentence.
My father has Lewy Body dementia. I WANT to know if I am going to be facing the same scenario for a number of reasons. Early diagnosis = better treatment options. YES Genetic biomarking anything that will assist in research and development of better treatment options and possible cure. The more knowledge we have the better equipped we are to promote research along the most effective channels. We also need to use this for awareness raising. We routinely test for cancers, diabetes, HIV, heart disease why not for Dementia?
These other disease were once life sentences but knowledge and research and awareness removes the stigma and the fear and provides life altering treatment . Personally I believe I am entitled to have the opportunity to plan my end of life years to ensure my family are clear about my wishes and to know that I am as prepared as I can be and that my family will support the choices I make because they have been included in the decision making processes. I believe you can deal with any thing if you know what you are dealing with but that deep over riding fear of what if? can cripple the way you approach life. I know many do not agree with how I feel and that is fine, it is their choice and I respect that , so long as they do not try to impose their belief on those who do want to know and who want to live and die in a manner of their own choosing.
Linda, thank you for your heartfelt thoughts.
These are the issues that will be explored by our governments and having different perspectives should not be about agreeing or disagreeing (although, that’s what often happens); rather, comments like yours and others’ here helps open our eyes. Again, thank you.
I see things differently. This whole thing is medical. Not about the rest of life with a dementia. How about advance planning for legal issues? financial issues? family and relationship issues? I could go on and on. You telling me that they are meaningless? I don’t care what type of dementia someone has, These things need to be attended to, the earlier the better. Earlier when no one can claim “incompetence”. Come on!
Carole, thank you for this perspective about the rest of life.
One question: How do people receive a dementia diagnosis then try to get coverage after honestly telling long-term care insurers that they’ve been diagnosed?
If more people would take an active role in the creation of Dementia Friendly Communities we would not have these problems with hospital. I have already started this process with a local community and now working on other. We need more doers and not people complaining on the process. We all know it’s broken what are we all doing to fix it. It all starts with all of you.
This is very interesting. My wife was diagnosed in 2004 as Parkinson’s Then in 2008 that was changed to Lewy Body Dementia with Parkinsonism. I have doubted the diagnosis as Lewy Body even though she does have some of the symptons. She does not have nighmares at all. She does have REM and dreams a lot but not nightmares. She only woke once in 9 years with nightmares. I will warn that if you loved one has Dementia, avoid the hospital ER’s unless it is absolutely necesary. I was unable to avoiv it on Nov 3rd and since that visit my wife can not walk alone, speech very seldom makes sense, eats very little and drinks less. A visit to the ER will advance dementia. Bottom line is the doctors have no clue what type of demetnia it is. It is called the Practice of medicine according to my wife years ago and I believe that. My wife has had some negatvie reactions to medications. I know Lewy Body can cause that as can many other medical problems.
Don, thank you for sharing your experience, which clearly illustrates the double-edged sword of early diagnosis.
As for the second part of your comment–avoiding the hospital–click to read about Dr. Richard Taylor’s experience and the tips he offers after being hospitalized. (Taylor lives with dementia.)