My father had a brain injury 5 years ago. My mother has had Vascular dementia since before my fathers TBI. We have 24 hour care for my mother and they also care for my father - just not as much required. He has been progressing into more and more dementia with memory loss, hallucinations, confusion, etc. We know he has dementia, but he does not know it. He does not want to be like my mother. His doctor set up an evaluation with a neuropsychologist that involves 3 days of appointments and a 5 hour "test". I read through it all and think it is excessive at this point. He would do poorly on all phases of the test and be diagnosed with dementia. No new news. My mother was diagnosed quickly by a neurologist in a 15 minute appointment. My father has had MRIs and CT scan, but all they say is there is evidence of a previous brain injury. The other concern is that my father will "give up" if he is diagnosed officially. He is such a proud man who was always in complete control of everything, very smart. I don't want him to get depressed and give up. He is already on nemenda, although I'm thinking of asking to try aricept. Of course, if we can help him I would like to. He is 86.

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Well, let's think about what would be different if Dad goes through the 3 days of appointments.

If the tests reveal that he has dementia probably of the XYZ kind, he will get worse. He will need more care than what you now have set up for your mother. How much more and when depends on his symptoms.

If he doesn't have the tests, it is likely that he will get worse. He will need more care than what you now have set up for your mother. How much more and when depends on his symptoms.

If you know he probably has XYZ dementia, you can look up the typical symptoms and deal with each one as it arises.

If you don't have a confirmation of dementia, you will deal with each symptom as it arises.

Some symptoms will be helped by certain drugs. These drugs were not specifically developed for dementia. For example, he may be prescribed an antidepressant or an anti-anxiety drug, regardless if you have an official diagnosis of dementia or not.

There may be some benefit to knowing if he has Lewy Body Dementia or Parkinson's Disease Dementia. This is because certain drugs may work differently with those diseases. Look up the symptoms of LBD and PDD. Do you have any reason to suspect Dad may have either of those? (Having hallucinations early in the disease is one sign.) Does the doctor suspect he might have either of those?

If Dad has the tests and you find out he has XYZ dementia, you can join a support group for people whose loved ones have XYZ. That can extremely helpful to you.

If you don't get a diagnosis, you can join a support group for people caring for their parents. That can be very helpful to you.

If Dad goes through the tests and gets an official diagnosis of some kind of dementia, he may be demoralized. He may give up. And/or he may be relieved to know there is a physical reason for the problems he has been having.

If Dad doesn't get an official diagnosis, he may be demoralized as he loses more and more of his cognitive abilities. He may give up. He may be frustrated by not knowing what is really going on with him.

If there were effective drugs or other treatments for specific types of dementia, that might add value to the testing. But there aren't.

I would have a nice sit-down chat with the doctor who recommended the testing, and ask what specific benefits are expected as a result of the tests. How will a treatment plan be different, depending on the outcome?

If you haven't read it already, I think you will find "Being Mortal: Medicine and What Matters in the End", by Atul Gawande. It addresses quality of life in its final stages.

Please come back and tell us what you do, and how it works out. We learn from each other.
Helpful Answer (18)
Reply to jeannegibbs

As others have commented I wouldn't put your dad through the hours of testing. However, as he has history of TBI, if he has complained or commented on feeling "foggy" or stopped in the middle of a sentence or activity then been unable to get back on track, you might want to request an EEG. My husband has a history of TBI and began feeling "foggy" and "out of it." It took the neurologist 10 minutes to diagnose seizure disorder secondary to TBI. This was confirmed on EEG. The key word is foggy. Hope you find the answers your Dad needs to improve his quality of life!
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Reply to Longears

Jeanne Gibbs nailed it. My dad was also diagnosed with a 20-minute appointment. My mother went to a gero-psych ward on an emergency basis and spent a week there. The only useful thing to come out of it was her medication regimen. The kind of intensive testing you're talking about is utterly worthless, just my opinion. Very expensive, incredibly difficult for the patient, and at the end you have no more useful information than you started with. You already know what you're dealing with. Try to find a primary care physician that specializes in geriatric patients. That's been a big help with my mom.
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Reply to debbye

When my own cognitive decline became troublesome (to me; I suspect it had been annoying my family awhile longer), I had the panel of neuropsych testing, AFTER a complete physical to rule out vitamin deficiency and other blood imbalances that might be quickly correctable by supplementation or medication. The reason to do the testing is, as someone said upthread, to sort out what kind of dementia process is going on. For some processes, we can expect a faster trajectory and need to make plans sooner than for other slower declines. For some processes there may be drug treatments that can be useful.

For me it was worth doing, to rule out treatable causes and make some predictions. What does your dad WANT to do? What does he understand about his brain injury?
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Reply to maggiebea

I think the exhaustive neuropsychological tests are worthwhile if you're not sure whether you're seeing dementia or not, and you still have to make major planning decisions about your own or your loved one's future care. If you're already making plans, or if an adequate care plan is already in place, the extensive battery of tests is probably overkill.

I just took the five-hour battery (in two sessions) because I was aware of some hitches in my own mental performance (I'm 75) and wanted to know as much as possible in order to plan for myself and also for handing off responsibilities like the supervision of my mother's care if necessary. The tests showed a deficit in what the neuropsychologist called "visual processing" or "vision processing." He recommended that, first, I see my opththalmologist to identify or rule out any condition that could be contributing to my below-average performance on that part of the tests. Depending on the results of that consultation, he said there are mental exercises that could help slow down any process of deterioration that's going on. So next week I'll be seeing the opththalmologist, while I continue seeing the neuropsychologist weekly.

Thank God my insurance (Medicare plus a Blue Cross supplement) is covering the cost. I'm relieved to have done this because whatever the results are, it will make some decisions easier.
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Reply to realtime

It took some time to get the report for Patrick, but it was complete, thorough, and helpful -- for me, as carer, and for his doctor, and eventually for his adult children. Pat disparaged the whole experience and has downtalked the psychiatrist at every chance. I think he felt he would be diagnosed as perfectly normal and was devastated to learn otherwise. He had been in denial from the beginning and wanted to be vindicated in that belief. Therefore, the psychiatrist was wrong. I am glad it was done, find the information helpful even today; my only wish is that it could have been done earlier in the journey. There might have been time for the delaying meds...
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Reply to GenKazdin

I agree with the others in that what is there to gain from this test? If you have long term care insurance and need evidence of his diagnosis for them to pay on the policy then that would be a reason to do it. My dad had the mocha test done and it took about 20 minutes to diagnose his dementia. This was needed for his long term care insurance claim. I can see the benefit of having this test done every 6 months to a year to monitor the progression of the disease. Not that there is an effective treatment to slow it down at his advanced age. My dads geriatric Doctor presented the test to him as "I Just want to monitor you over the years and I need this baseline test to start". He never told my dad he had dementia, but his doctor and I had a private conversation about the results. I do not think many people out there would want to know they have dementia. They can just think they are having some memory issues due to age. Good luck.
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Reply to Marysd

My retired husband was diagnosed a year ago this month with dementia. He worked and has medical and hospital care from a Trama 1 care hospital. His dementia is hereditary, his grandfather and father having the same disease.
I started becoming aware of changes many years ago. (He is also bi-polar.) My husband has always been a gentlemen! We decided to take him to his internist, after he became angry and forcibly pushed me and I almost fell. Up to this point in our 30 years of marriage, he had never laid a hand on me.
Also, we had workmen in the home and in the process he stated that they had stole his false teeth. Three days of hell ensued.
The internist suggested that we see a neurologist. We went and they set up an appointment for a four hour test to see if he had dementia and at what stage. The testing was time consuming and he was very tired after the sessions, but it was the best thing we could have done. It not only gave me reassurance that there was a problem, but made me accept that our life was about to change.
I have been able to get all the legal paperwork completed with my husbands help. And we will be leaving our beloved home for a care facility with all stages of care. I know the sooner we get into this setting, the better my husband will accept the changes that will take place in the years to come. My only great regret will be losing our beloved dog! I know this will affect my husband for some time, but I am willing to go through this, in exchange for his welfare. Everything else, in our life is workable.
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Reply to Rocky1121

Is the PCP a geriatric doc? If not get one.
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Reply to gladimhere

Our LO was diagnosed by the primary care doctor after we sent a letter detailing our observations of changes in behavior and put on Aricept and sent along her way. We encouraged her to make an appointment with a Memory Care Clinic. There was extensive testing, but I thought it was helpful to rule out other possible causes for her confusion. The team included a geriatric psychiatrist, geriatrician, neuropsychologist, nurse practitioner, family and marriage therapist and social worker. They asked us to have a separate neurological exam, including an MRI, before the consultation. They are seeing her twice a year now, and can be consulted for any behavioral or physical challenges that arise. Even though the diagnosis didn't change, I was happy that we investigated other possible reasons for her confusion and have the support of the team going forward.
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Reply to Marcia7321

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