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Repost from the general board: how is dementia diagnosed?
twilightsparkle
Posted: Wednesday, December 26, 2012 10:27 AM
Joined: 12/26/2012
Posts: 16


Someone suggested I post this here since my H is younger. Here's what I wrote on the general board:


Hello everyone, I just signed up here today because I'm so desperate for guidance and answers, and there's no one for me to talk to. Quick background, I'm 34 and my husband is 38. He's in the process of being evaluated for dementia. 

 

The first thing I noticed was that his judgement has gotten very poor. We came close to having a tragedy when he left our 3 year old alone in a swimming pool (graduated entry, but she had no life jacket on). I found her there alone, he had gone to shoot hoops. He also occasionally says things that just don't make sense (he has dark hair, but he one day said that he's always considered himself as having light hair. I was confused, then he denied it, and then he confessed to saying it.)

 

His father has an undiagnosed neurological condition which manifests physically as well as with dementia. He's been noticeably affected for 15 years now, since he was about 55. When husband and I went to meet with my father in law's neurologist, I told him that I was worried about H and told him the 2 things I wrote about above.

 

He immediately ordered cognitive testing and an MRI. The cognitive testing was done quickly, and according to my husband, the doctor said she doesn't think it's dementia, but that he does have visual processing disorder, auditory processing disorder, a short-term memory disorder, a general processing disorder, and he doesn't remember what else.

 

The MRI is on Friday. After that, we'll meet again with doctor who did the cognitive testing and I think she'll put it all together for us.

 

Here's where I need help: I'm American but we're not in the US. This doctor does speak English, but it's not her first language. I want to go into the appointment with a clear understanding of how dementia is diagnosed, and whether it's really possible that he has a whole bunch of processing disorders but NOT dementia. I've also come across the term mild cognitive impairment and am wondering if she'll mention that as a possibility. Should I expect that they'll want to test him again at some point to make sure he's not declining (like, every year or so?).

 

Obviously, I'm scared out of my wits here. We have 2 small children and I don't know what I'll do if it's dementia. Alzheimers runs in his family, but the neurologist assured us that it's very unlikely that it's that. We haven't told anyone because we don't want to worry our families if it turns out to be just the processing problems and he's always had them. 

 

Thank you in advance for any information you have. 


Iris L.
Posted: Wednesday, December 26, 2012 11:24 AM
Joined: 12/15/2011
Posts: 16569


Welcome twilightsparkle.  I'm sorry this is going on in your family.  The diagnosis of Alzheimer's disease is essentially a rule-out matter, in terms of ruling out the many possible medical and other conditions that can cause dementia.  He should be evaluated for hormonal and nutritional diseases, head trauma, depression, medication side effects, and other issues. 

Your neurologist has already begun the process.  In the U.S. we recommend that patients consult with a neurologist who regularly diagnoses and treats the dementias, because not all neurologists are skilled in this area.

How is your husband doing with his work?  Have you or he noticed any change in his performance?  How is he handling financial matters, such as paying bills?

If you can get a copy of The Alzheimer's Action Plan, by Doraiswamy and Gwyther of Duke University, you can learn more about the diagnostic process.

I noticed that you said the doctor gave your husband the results of the neurocognitive testing.  You should make it a priority to accompany your husband on his medical visits.  Most often the patients don't remember or cannot process the full impact of what the doctor is saying.  If you need to get written permission from the doctor, such as the HIPPA consent that we have here, please do so.

It is possible that he has mild cognitive impairment.  You still need to rule out other conditions.  I myself have a diagnosis of cognitive impairment nos, not otherwise specified.  I am being treated with Exelon patch and Namenda.

There is a new book out called Living with Mild Cognitive Impairment by Anderson, Murhy and Troyer.  There is much diagnostic information in this book also.

You said he has always had the processing problems.  What do you mean by that? 

Iris L.




twilightsparkle
Posted: Wednesday, December 26, 2012 12:45 PM
Joined: 12/26/2012
Posts: 16


Iris, I'm so sorry, I meant to hit reply and I accidentally reported your post! Ugh, I'm sorry!

I am so kicking myself for not going with him to the cognitive testing appointment! I didn't realize he'd get any immediate feedback. 

That testing was very thorough, he said it took about 2 1/2 hours. According to him, the doctor told him that the testing showed visual processing disorder (she also used a term that translates to dyslexia), auditory processing disorder, some kind of short-term memory problem, and some kind of integrated general processing disorder. That's all he remembers, but he is pretty sure there was more. He said she did point out that there were also lots of areas in which he did NOT have sub-normal scores.

So according to my husband, she said she doesn't think it's dementia. But if it's not dementia, I'm confused as to what it is. Was she saying that these processing disorders were always present? 

I'll definitely ask her this when I see her, I'm just trying to be totally prepared. What if she says he was born with all of these processing disorders? I know his memory and judgement have gotten worse over the years... Is it possible that I'll have to push for more testing? I've wondered if seeing a psychiatrist is a possible next step... before the alarms when off for dementia, I was beginning to think he was just totally self-absorbed. He would ignore so many of my requests, forget to do things that I asked him.. our marriage was really starting to suffer. 

As far as work, he's doing fine. His work is fairly easy for him though, plus he's self-employed, so there's no one to oversee him. 

Bill pay is pretty much all automatic, though I do have to remind him to do some things. 

I'm scared that we're going to see the doctor who did the cognitive testing, and she's going to say he has these 6 processing disorders, and that's that. I know I'd feel like... how have we been married for 8 years and I'm just now seeing this. I KNOW he's gotten worse. I know answers aren't always possible, but we need help. She won't leave us hanging, will she? 


Myriam
Posted: Wednesday, December 26, 2012 4:40 PM
Joined: 12/6/2011
Posts: 3326


I agree with Iris about the neurologist. Not all neurologists are well versed in Alzheimer/dementia.  You may want to speak with the doctor directly (take with you someone who can translate), but have prepared a list of questions before you call/meet with her.   


 

There are 4 genes that have been identified as causing AD. At least one gene causes early onset Alzheimer's disease.  You didn't mention which country you are living in, but the Presinilin 1 gene is prevalent in the Caribbean and in Central and South America (although it can be found in many other parts of the world and the U.S.). The Presinilin 1 gene causes EOAD. 


 

I started noticing symptoms and was thoroughly tested, but nothing was detected. Because my symptoms persisted, I decided to be tested for all known genes. That's when I learned I had the Presinilin 1 gene. Am so glad I did and was prescribed the memory meds (Namenda and Exelon Patch), which I found made a big difference. 


Iris L.
Posted: Wednesday, December 26, 2012 6:50 PM
Joined: 12/15/2011
Posts: 16569


Twilight, I can see that you are very anxious about what is happening to your husband.  Who wouldn't be, he is young, and your family is young.  What you have to remember is that all of his symptoms could be caused by an undiagnosed medical condition or medications.  All these areas need to be checked out by a doctor who will be thorough. 

My neurocognitive testing took about six hours, spread over two days.  Like your husband, I was told to have some difficulties is several areas but not enough to rise to the level of dementia, but definitely not normal for my age and education level.  That is why the dx is cognitive impairment, not dementia.  Nevertheless, it still means someting is wrong.  In my case the neurologist prescribed medication as a trial, and the medications are helping me.

Many countries have an Alzheimer's Association, and there is an international Alzheimer's Association.  I will search for that website.  You might think about calling long distance to the national office of our Alz. Assoc. here in Chicago and speaking with a Care Consultant for more information and advice about your situation.

To be frank, Twilight, I don't see how your husband can be so symptomatic yet function normally in his work.  I think you need to check closely and find out what is going on, especially since he is self-employed.  One of the first areas of concern is preformance problems at work.  You will have to do more than ask him if he is having trouble, you will have to discretely make inquiries from customers and/or colleagues to see if there are any problems developing.  Check the books for discrepancies. 

Have you visited the Spouse/Partner board?  Many of them relate difficulties that were perceived to be marital in origin, but later were found out to be dementia-related. 

Ask the doctor for written copies of the test results and any other material.  You may need to visit another city for a second opinion.  Also, was the test given in English or in his native language?  It makes a difference.

Iris L.


Iris L.
Posted: Wednesday, December 26, 2012 6:54 PM
Joined: 12/15/2011
Posts: 16569


Twilight, here is the link to a list of Alzheimer's Associations in countries around the world. 

  

 http://www.alz.co.uk/associations

I forgot to ask in my post above, was he ever told he had Attention Deficit Disorder as a child?  Adult ADDers have processing difficulties but they usually began in childhood. 

Iris L.