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difficulty getting a diagnosis
JoetteM
Posted: Thursday, February 5, 2015 7:50 AM
Joined: 11/27/2014
Posts: 2


My husband is 57 and clearly has dementia. We are having some issues getting a diagnosis. He has all 10 of the "warning signs" of Alzheimer's but when he goes for the cognitive testing, they say he has depression. I am wondering if it can be both. We are seeing a neurologist next week as well as a psychiatrist (he will go on anti-depression meds). Can someone share how they got their diagnosis? types of tests? process of elimination? type of doctor who made the diagnosis?
Iris L.
Posted: Thursday, February 5, 2015 6:22 PM
Joined: 12/15/2011
Posts: 18342


Welcome, Joette. There is overlap between depression and dementia. In my own case, one of my diagnoses is major depression with psychosis, which includes cognitive impairment. Many, if not most, psychiatrists are unfamiliar with this diagnosis nor how much cognitive impairment is a part of it. I only found this out about three years ago, 3 years into my treatment with Exelon patch and Namenda. Confusing, is it not?

I hope your dh has had a thorough medical evaluation to rule out the many medical causes that mimic dementia. Also that his medications have been thoroughly evaluated because many medications have memory loss as a side effect.

Has he had the 6 hour neurocognitive testing, done by a neuropsychologist? An office mini-mental exam is not enough. In my own case, the neurocognitive testing pointed to both cognitive impairment plus depression. The neurologist gave me a trial of anti-depressant, which did not help. Then he offered me a trial of Exelon patch, from which I noticed improvement in a few days. Sometimes you just have to try a medication and see how it works.

The other thing that is important, that I also discovered after I had been on Exelon patch for a year or so, is that I have sleep apnea. Sleep apnea also affects memory and cognitiion. and it may have few external symptoms, except fatigue. I had an overnight sleep study in a hospital sleep lab before this diagnosis was discovered. Treatment with CPAP has improved some of my neurocognitive testing results, but not all.

Is the neurologist you are working with one who regularly diagnoses and treats the dementias? Not all neurologists specialize in dementia.

To answer your question, yes, it is possible to have both dementia and depression. Depression is a risk factor for dementia. And many people with dementia are solely on antidepressants as treatment. It can be very confusing.

This is why it is so important to consult a very knowledgeable neurologist who is willing to treat the patient, and not just test results. This is not the type of condition in which there is one test result that says, yes, this is Alzheimer's disease. Even if the dx is dementia, there are different types of dementia, many of which do not respond to the memory medications.

Keep proceeding, and use a notebook to log your findings and your questions. It may take some time to get a good diagnosis, and the diagnosis may change after some time, because other symptoms may appear.

If you post back with what testing he has already have, I might have more to tell you, if I can.

Can your husband join us in this board? He does not need to have a formal diagnosis in order to join us patients. He needs encouragement and support from his peers.

Iris L.





Paul Hornback
Posted: Friday, February 6, 2015 8:56 AM
Joined: 8/9/2013
Posts: 584


JoetteM, Iris has provided some invaluable insights into the diagnostic process. In my case, it took well over a year to finally get the diagnosis of Early Onset Alz. I had multiple Cat Scans, MRIs of the brain, PET Scan, blood tests, 6 hour neurocognitive testing, trip to the Mayo Clinic, trip to the Cleveland Clinic, and many, many visits with the neurologist.

It was a long process, but my neurologist wanted to be sure especially at my age. One doctor I saw thought it might be depression but I'm not a depressed individual and my Neurologist agreed.

We would love to have your husband join us on the boards. we try to encourage each other and offer ways of coping with the disease. I'd be lost without everyone's help, support, and ideas.

God Bless, Paul



Iris L.
Posted: Friday, February 6, 2015 12:15 PM
Joined: 12/15/2011
Posts: 18342


Something Paul said jogged my memory. I was not a depressed person, either. But in the late 1980s, when I became symptomatic, a popular term was "burnout." I did identify with burnout. But burnout is not a medical term. So the doctors diagnosed me as "depression." I always said to them, my dx is depression, but I am not depressed. I now accept that dx, because my thought processes have slowed down, or become depressed. There are other features of depression that don't include sadness. I am not sad. My cognition is slowed.

Iris L.


Myriam
Posted: Friday, February 6, 2015 4:17 PM
Joined: 12/6/2011
Posts: 3326


Joette, almost 100% of persons under the age of 60 who develop dementia(otherwise called early-onset) have a genetic form of Alzheimer's/dementia. Does your husband have/had parents that developed Alzheimer's/dementia?

Please call the Alzheimer's Association chapter in your state. They may have a list of qualified neurologists/physicians who diagnose and treat persons with dementia.

Here's a site with helpful information:

http://www.alz.org/alzheimers_disease_early_onset.asp


Iris L.
Posted: Friday, February 6, 2015 6:40 PM
Joined: 12/15/2011
Posts: 18342


Myriam, I believe what you say is true when talking about familial early onset AD. I understand the cause for most non-familial early onset AD is unknown at this time. Do you agree, or do you have different information?

It is odd. A while ago I took an informal poll of the members of the Spouse/Partner board. More than half of them had LOs who began their illness before age 65, putting them in the classification of early onset, although not all had Alzheimer's disease. This could be skewed because many older cgs may not be comfortable with using a message board, and thus only the younger ones post. But it is still odd.

Iris L.

Mimi S.
Posted: Wednesday, February 11, 2015 10:22 AM
Joined: 11/29/2011
Posts: 7027


Hi all,
my understanding is that those with the familial gene, like Myriam constitute a very small minority.
Those diagnosed with younger onset are like the rest of us. Some get it earlier than most.


Myriam
Posted: Friday, February 13, 2015 12:16 AM
Joined: 12/6/2011
Posts: 3326


Mimi, most early-onset is inherited. Here is an excerpt of an article from the National Institute of Health about it and a link to the full article.

Early-onset Alzheimer's disease occurs in people age 30 to 60. It is rare, representing less than 5 percent of all people who have Alzheimer's. Some cases of early-onset Alzheimer's have no known cause, but most cases are inherited, a type known as familial Alzheimer's disease (FAD).

Familial Alzheimer's disease is caused by any one of a number of different single-gene mutations on chromosomes 21, 14, and 1. Each of these mutations causes abnormal proteins to be formed. Mutations on chromosome 21 cause the formation of abnormal amyloid precursor protein (APP). A mutation on chromosome 14 causes abnormal presenilin 1 to be made, and a mutation on chromosome 1 leads to abnormal presenilin 2.

Scientists know that each of these mutations plays a role in the breakdown of APP, a protein whose precise function is not yet known. This breakdown is part of a process that generates harmful forms of amyloid plaques, a hallmark of the disease. A child whose mother or father carries a genetic mutation for FAD has a 50/50 chance of inheriting that mutation. If the mutation is in fact inherited, the child almost surely will develop FAD.

http://www.nia.nih.gov/alzheimers/publication/alzheimers-disease-genetics-fact-sheet


alz+
Posted: Friday, February 13, 2015 1:06 PM
Joined: 9/12/2013
Posts: 3608


Getting diagnosed...I was a participant in an ALZ research project because my Grandma and dad had it. I never thought I would have it - esp so young. But those 6 hour mental exams showed a huge drop off in a 2 year period and by then losing things, forgetfulness, anxiety, depression and so on had gotten to be a real problem in living.

My diagnosis came from vision problems which turned out to be NOT in my eyes, but in the brain. I had an MRI and have not had other scans although I would like to now as I believe it would give me peace of mind to know "this loss in my brain is causing this issue..." and not just my imagination or bad behavior.

What Iris posted about depression was really good. "I am not sad. My cognition has slowed." It is very difficult to describe these interior changes, I wonder what your husband describes and what he thinks is happening. I think some people do not know they have it...not sure my Dad knew. I think he was more peaceful because he did not carry the burden of an early diagnosis.

Depression of the sad kind runs in my Mother's side. It becomes worse when I can not be physically active or mentally occupied and the cognitive losses mean I am sad more often now but in a different way. Lots of anxiety mixed in. I was under the care of a psychiatrist for 10 years and he thought the changes were Depression. When I got the ALZ diagnosis he changed my medication.

I was formally diagnosed with ALZ by an elder neurologist once the MRI came back but I can still draw a perfect clock and some days have better word recall than others. My neurologist suspected Posterior Cortical Atrophy and I had never heard of that and just heard ALZ. My understanding (which may be off) is symptoms are simply based on what part of brain is affected and it is all the same plaques and tangles on imaging scans. But he did say this: Aricept, Namenda did make me feel like I was on speed and I did finish painting a basement wall on those meds which he said "confirmed" ALZ diagnosis. He was then forced into retirement so I did not get to see him when I began to have bad reactions to the drugs...a couple years later and it seems his original thoughts about PCA were probably right.

This is a very difficult time for you and your husband. The boards are a great help. It is a strange illness but new therapies are being developed, new insights and it is possible your husband will benefit from them. If you have children, the belief that this is inherited can be another sock in the jaw to deal with.

A loving home, enough people to help you both carry on are the best help available - for life with or without dementia.

wishing you both lots of love and courage.