So often, that is the question many people with dementia ask themselves. It is also the phrase many others say to you, as it seems it is so difficult to believe a person diagnosed with dementia can function well in the world. The only way to know 100% that someone has dementia is with a brain biopsy (autopsy), which is not something I’m quite ready for! Dementia or not, I certainly have many of the symptoms of the disease, and other things such as vitamin deficiencies, strokes or brain tumours have been ruled out. Two medical neurologists specialising in this disease in two different states have confirmed the diagnosis, and have signed off on it for a critical illness insurance claim, something no medical practitioner would do lightly as it would be illegal to do so. Still there are times when I and others find it hard to believe I have dementia. Whether it is or not, the disabilities of a neurological disorder causing episodic memory loss, dyslexia, and a number of other things including a significant language disorder is real. It is happening. Many things are now seen upside down or back to front, road signs, letters, number combinations, almost everything takes me a lot more time to connect and process properly. Calculators have become very tricky to use, using my computer is becoming more challenging, and most things now take the concentration of exams. Simple mathematics is not possible without help. Thinking, remembering, and naming things is more difficult. Writing blogs takes much longer for something more than a daily journal or diary style entry, which my back up brain (dear husband) now helps me with. All of these things get in the way of my everyday living, and very simple every day functioning requires masses of focus and concentration, and regular assistance. Thankfully, I have learnt to see these symptoms as disabilities to be managed, and we continue to develop strategies to enable me to function and live well.
The Alzheimer’s Reading Room says on their home page: Dementia is the gradual deterioration of mental functioning, such as thinking, concentration, memory, and judgment, which affects a person’s ability to perform normal daily activities. On the same site, the small precursor to an article by Dr. Robert Stern, Director of the BU ADC Clinical Core has confused me about dementia, What’s the Difference Between Alzheimer’s and Dementia? It says, In a nutshell, dementia is a symptom, and AD (Alzheimer’s Disease) is the cause of the symptom. When someone is told they have dementia, it means that they have significant memory problems as well as other cognitive difficulties, and that these problems are severe enough to get in the way of daily living….. Although the article goes on to explain dementia, I am more confused than I was before; I have never read or heard before reading this article that dementia is merely a symptom of AD. My dear husband thinks it is just differing nuances between the ways English is used in different countries. Understanding what is happening, and why it is happening can be helpful managing living with the disruptions of the disabilities of dementia, or any other disease or event. Understanding usually assists with acceptance, which is important for us to get on with our lives as positively as we possibly can. The fact that some prefer to call this type of neurological disorder a brain injury that will end up being dementia also confuses me. Just like other chronic and terminal diseases, there is usually a gradual deterioration, yet we generally wouldn’t choose to call it something else until we go to the final stages of the disease. Maybe it is not dementia, but if it has been diagnosed as that, regardless of the type of dementia it is, then not accepting the term dementia might just stigmatise us more? If I was gay, no-one would say but you’re not really gay, or you’re just a little bit gay, so why not fully accept the term dementia? Thinking, and writing about thinking continues to fill my days, and no conclusions or endings are in sight, which is as it should be. No matter what I believe today, someone will challenge it tonight or tomorrow. I look forward to it!
The best analogy that I recently heard was that discussing dementia is somewhat like discussing cancer…If someone’s told they have cancer, the next question should probably be “What type?”
Dementia is, as @frangipani said, “a progressive worsening of brain function.” “Progressive” is important to the diagnosis. I believe that one has to show symptoms for >6 months to be diagnosed with dementia, too (less than that may be delirium).
As a few other commenters have noted, the loss of brain function that defines dementia can be caused by any number of diseases. And, as I understand it, it’s possible to have more than one: for example, someone diagnosed with Alzheimer’s Disease may also develop Parkinson’s.
I wrote some about it here: http://mysimplec.com/2012/03/09/alzordem2/ . Hope it helps!
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Btw , I think Stern is quite correct and it need not be confusing. Dementia is the label given to a clinical description of a set of problems with memory and other brain functions that deteriorate over time. Alzheimer’s disease is but one “cause” of dementia, that has a specific definable pathological (ie biopsy or other test) corollary, Pick’s disease is another “cause” – in fact, these two are probably not actually “causes” but sub groups with defined patterns of expression and prognoses, and definable pathology. The “cause” of these and other progressive memory loss syndromes is, I believe, largely unknown. It could be genetic, or viral (I think the glandular fever virus has been implicated at one stage), or traumatic (ie an injury), or metabolic, any one of many other factors or a combination of several factors. So even the “diagnosis” of dementia is problematic – it is necessarily clinical and made over time (since deterioration over time is part of the description). Also, I believe, but I may be wrong of course, that brain injury/pathology on MRI and other “scans” is not necessarily predictive of the clinical picture. For example, you could have a lot of brain changes but function perfectly fine, or you could have few changes on MRI and function poorly.
At least, this is my understanding of things, although I am not a neurologist!
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Hey thanks Sally, that helps a lot… it is good having friends with serious medical knowledge and background!! xx
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Your blog really scares me. I am 66, and I cannot seem to utter a sentence without not being able to find the word for a simple noun, like “book”. I find it difficult to keep track of things that used to be easy to do. I cannot remember simple tasks to do unless I write them down. I have to do things one at a time, when I used to be able to multi task like a demon. It terrifies me to think it is the beginning of “dementia”, but then I look around and all my friends that are my age have the same problems.
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All I can think to say is, if you are really worried, speak to your doctor. x
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Dementia is the progressive worsening of brain functioning, and it can have many causes. Dementia is diagnosed by tests of brain function, such as memory tests and thinking tests, and to show that these deteriorate over time.
Alzheimer’s disease is but one cause of dementia, and has a specific pattern of loss of brain function starting with short term memory loss. Whilst the pattern of memory loss can point to Alzheimer’s disease, it can be confirmed with certainty only by brain biopsy/ autopsy, by showing the presence of characteristic nerve cell tangles and plaques.
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I refer you to my comments on 23rd February on this blog. If it’s not dementia then hooray! x
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oops, I just found this comment!!
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Hmm, my understanding up to now is that dementia is a kind of umbrella term for lots of different symptoms and that alzheimers, along with pick’s disease, frontotemporal degneration, vascular dementia etc etc were particular combinations of symptoms. For example in alzheimers memory is a problem earlier than in PIck’s disease but in Pick’s disease personality changes happen early on.
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I agree with you Kate nothing is a “little bit” of anything. It is like most things you have it or you don’t. Thank God for DH’s I say
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Here in the USA my husband had to under go neuro-phychological testing along with a CT and MRI to get his diagnosis. Ritalin is currently helping with his symptoms, it makes the brain cells fire up (per the Dr). It brings back part of my husband to me, I tell when he has forgotten to take it.
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Thank you for the tip… I will follow it up with my own neurologist who I see in a couple of weeks.
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