How do I know what type of dementia my Dad had?

So sorry for your loss.

My father was diagnosed with Lewy Body Dementia in December and died in February. He began having some problems swallowing back in January of the previous year, then by August of last year he could not swallow hardly any solids. We did not see and visable signs of demetia until January of this year when he started having a few halucinations. The disease progresses quickly after starting the drug Risperadone.

When my husband was first suspected to be in "early dementia," about 5 years ago, he was referred to a neuro-psychologist for evaluation, who made the determination that his cognitive deficits at the time were non-Alzheimer's in nature, and were in all probability due to progression of brain damage sustained 10 years earlier. That was 5 years ago, and at that time he was regularly exhibiting "sundowning" and other dementia behaviors; over the next 3-4 years it became clear that he was/is suffering from Korsakoff's Psychosis, or alcohol dementia. Through this experience I've learned that any definitive diagnosis does indeed take time, and in many instances may not be completely accurate pre-mortem.

Unless there is an autopsy, one does not know for sure the actual "cause" of death, however, your father's death certificate probably listed pneumonia as the cause. It doesn't really matter, just know he is in a better place. My condolences for your double loss.

Excellent resource you mentioned.. types of dementia on Alz.org website! Thanks!!!

the two or more conditions are similar enough to default to dementia . the only exception is if you catch the elder hanging in the closet by their feet . this phenomenon is called " bat s*it crazy ' ..

NotHisFault, Thank you for doing such a wonderful careing thing with your beloved Bill's brain and spinal cord to help others. Not everyone can do what you did in his memory. He was truly blessed to have you as his wife I hope you find comfort knowing that.

My husband's first neurologist only said Bill had Dementia - but after three years, I asked what 'type' of Dementia he had and the doc said he really couldn't tell me since he was more of a generalist neurologist. The doc said if I really wanted to know, I should take Bill to UT Southwestern in Dallas (I live near Dallas) since they have a complete Dementia/Alzheimer's wing where they see patients, as well as doing research. Needless to say, I immediately switched doctors and started going to UT Southwestern. The doc there diagnosed him with Alzheimer's - but also said no one knows for an absolute surety until there is a brain autopsy. When my beloved Bill passed away on June 23, 2014, I donated his brain and spinal cord to UT Southwestern for Alzheimer's research. Two weeks ago, 9 months after his death, I finally received the brain autopsy report. It confirmed the Alzheimer's, and also said he had a stroke recent to his death which expedited his death. I always wondered how he went downhill so quickly towards the end. Now I know. I miss him so incredibly every single day - and I sincerely hope and pray that even a small amount of data from his brain autopsy will help to find a cure, or at least some effective medication, for this unforgiving disease. God rest and bless his kind soul.

JudeAH53: Thanks for your reference referral. Excellent information!

The book I referred to should be What IF it isn't Alzheimer's?

My husband was diagnosed with Alzheimer's by our primary doctor. We accepted his, but eventually the doctor wanted him to see a neurologist. After three hours of testing, and evaluation, the neurologist said he fits into the rare form of dementia, frontal temporal lobe deterioration. After looking back, this makes more sense. The book "What is it isn't Alzheimer's" has been very helpful to me, and I would recommend it, even tho there is a lot clinical stuff way above my head, it has good information! Hope this helps.

Just for the record swallowing difficulties have many causes and are very frequent in the elderly. Always be very careful when feeding a loved one.

There are many dementias and they are difficult to diagnose...exact diagnoses very often occurs post mortem but as an understanding of dementia increases so the diagnoses improve. There are typical markers and they can be found on most websites by googling them. My mum has mixed dementia - now being used in the UK when the markers of several dementias are apparent. She has vascular dementia for sure, alzheimers for sure and possibly Lewy Body but they arent so positive about the latter. This site will help you understand the various types http://www.alz.org/dementia/types-of-dementia.asp
Typically from this site Alzheimers follows this pattern :
Symptoms: Difficulty remembering recent conversations, names or events is often an early clinical symptom; apathy and depression are also often early symptoms. Later symptoms include impaired communication, poor judgment, disorientation, confusion, behavior changes and difficulty speaking, swallowing and walking.

Revised criteria and guidelines for diagnosing Alzheimer’s were published in 2011 recommending that Alzheimer’s be considered a slowly progressive brain disease that begins well before symptoms emerge.

Brain changes: Hallmark abnormalities are deposits of the protein fragment beta-amyloid (plaques) and twisted strands of the protein tau (tangles) as well as evidence of nerve cell damage and death in the brain.

I have a friend who wanted to know this about her mom who had early onset dementia. Her mom is still living and she wanted to get an autopsy when the time comes but she wants the results...most places said "No results back"...she finally found a medical center and specific Doc that will agree to do the autopsy and report back.
This does not seem like a bad idea...if they really can't diagnose things before death, we should be able to have the accurate information afterwards as it may affect our future.
Sorry for your loss!

Swallowing problems are common in many forms of dementia. They were certainly an issue in my husband's Lewy Body Dementia.

Many people, including MD's use dementia and Alzheimer's interchangeably. They also interchange delusional and hallucinating. big differences.

I agree that lay people use Alzheimer's Disease the same as they do Kleenex. As a generic term. But doctor's tend to try to be a little more specific. For example, my mom's doctor has said that her dementia is likely vascular in nature. There are specific markers that help them to make a decision one way or another. It is true that while they can make educated guesses, the only positive ID is from autopsy.

While it might not matter which type of dementia your father had, you may wish that you could know what to expect in your future. I can understand this. For what it's worth, forgetting how to swallow is, as I understand it, an AD symptom.

Babalou is correct. An autopsy could have given an exact diagnosis. Some doctors are more careful than others about labeling dementia types. Apparently Alzheimer's was the working assumption, if it was in his charts.

My understanding is that the type of dementia can really only be determined with certainty by autopsy. I'm sorry for the loss of your parents.