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Dementia is such an ambiguous word. From what I read, proper treatment begins with a proper diagnosis: to learn the underlying disease that is causing the dementia symptoms.

Dementia is the only "diagnosis" I've ever been given, and I've asked many, many times. I'm no more comfortable with this then I was after the first time I asked. Is there anyone else who feels like they are groping for answers in a pitch black room? Or is this pretty standard?

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It's often very difficult to make a correct diagnosis to begin with but sometimes over time, with what is seen in the patient, a more true diagnosis can be made. My Dad was originally diagnosed with Alzheimer's four years ago. Then this past fall, after documenting everything he did the entire year and discussing it with his neurologist, his diagnosis was changed to Lewy Body Dementia. He was moved to a nursing home in November. Their paperwork lists him as having dementia with Lewy Bodies. So many of the symptoms of different types of dementia begin the same way that often you just have to see what transpires over time to make a definitive diagnosis. And even then the diagnosis might be wrong. I don't know how long ago your diagnosis was made, but I would suggest keeping a journal of all the symptoms, strange occurrences, hallucinations, delusions, cognitive problems, whatever might be happening, and discuss it with the doctor at the next appointment.
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Figuring out the underlying disease that is causing the dementia symptoms would be very useful in many ways. Unfortunately, it can be extremely difficult to impossible to do that until the patient dies and an autopsy is performed. Until then, a diagnosis is an educated guess.

Some professionals are more qualified to make the educated guess than others. Very few primary care doctors could do it. Specialists such as geriatric psychiatrists and behavioral neurologists are a better bet, using tools designed to reveal certain aspects of the diseases.

Even the experts misdiagnose the underlying disease with alarming frequency. When clinical diagnoses are compared to autopsy results, some studies show they are correct 85% of the time, but other studies show accuracy rates as low as 50%.

This is NOT because no one is trying! There is extensive research being conducted to try to come up with methods to improve the accuracy of diagnosing the underlying causes of dementia. There are "brain banks" in various research centers around the world, where tissue donated post-mortem by dementia patients can be re-examined as new knowledge is acquired. (My husband donated tissue to such a bank.)

Progress is being made. For now, seeing an expert, or maybe more than one expert, and comparing the tentative diagnosis to what you can read about that disease and what other caregivers tell you about the symptoms of their loved ones who have been diagnosed with that disease is probably the best that you can do.

Fortunately, even without a confirmed diagnosis of the underlying disease, the symptoms of dementia can be addressed to improve the quality of life of the patient and her family. A patient with delusions will typically respond better to some caregiver approaches than to others, regardless of what is causing the delusions, for example.

It is frustrating not to have a reliable diagnosis. It does feel like groping in the dark. Lights are gradually being lit, but the science just isn't there yet to turn the switch on in the whole room.
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visited aunt edna yesterday, shes 90 and follows the aforementioned pattern. lucid for a while, then outlandish for a while. she was stuck on the # 9. said she lived with a grandson since she was 9, been taking this ( new ) medication since she was 9.everything seemed to go back to when she was 9. thats the kind of stuff that a good doc might pick up on. dementia is horrifying but imo the patient , in their delusional state, dont suffer as much emotional pain as one would expect. ( thankfully )
i stayed an hour and 9 minutes. lol
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im not sure what kind of tests were given to my mother in the hospital but she could have been diagnosed with dementia just from the stream of delusional babble that she was emitting. during the last few years expect long periods of relative calm and then the occasional mental collapse, for lack of a better description. eventually the patient will walk with a foot dragging shuffle and lose coordination and mobility.
dementia is considered a fatal condition because the brain controls all bodily functions and the functions will become non responsive. in my mothers case her digestive system ground to a halt and death was only hours away.
youll need to exercise more kindness and understanding in their final months than you ever thought yourself capable of.
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A neuro-psych exam and MRI of the brain would give more detailed information. If you are only seeing the primary physician, you could ask for a referral to a specialist.
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