I'm reading about this topic on many different sites. It seems to me that most primary care physicians are NOT qualified to diagnose specific dementias. They are too eager (we can attest) to hand out the 'samples' that are left in their offices by the cute drug sales people (and until recently, enjoy the perks of prescribing specific meds!) There is no way a PCP can be an expert in every type of dementia. His job is to isolate and define the symptoms and come up to a general diagnosis. Most PCP's are quick to refer us to specialists after that. Am I reading that many of you are still working with your PCP's?
Do you agree or disagree that only Neurologists can actually define the specific type of dementia, (of which there are many that do not respond to - for example- Aracept - AT ALL) which seems to be the catch all drug for a person who presents a confused state of mind. To make a point, it's my understanding that FTD patients should NOT be put on Aracept! It does nothing for this diagnosis.
Nancy-I can only give you my experience. Started with a PCP who sent us to a neurologist for testing and diagnosis. From there to a psychiatrist who started husband on Aricept which made matters worse because it was the wrong drug for FTD. Back to the neuro and I asked for seroquel Which helped a lot. I took hubby off Aricept. Tried on nemendia which didn't help, Admitted to a psych hosp and treated with usual AD meds again-of course they didn't work. They asked ME what his diagnosis was as their treatment wasn't working duh!!! I researched FTD, told the psychiatrist what drugs I wanted and to get rid of me they acquiesced. Did I feel all alone in our journey-you bet!
I am only in the beginning of the journey, so this is my understanding: the PCP will do initial intact/diagnosis and do referrals. With my husband he told the doctor he was having problems remembering and repeating things. He was referred to the neuropsychologist, ordered blood test, and for a CT (this was in Portland VA). When we were in Nevada working we got a copy of the psych evaluation and I was ticked because it recommended an anti-depressant and dementia clinic. I went with him to the doctor and demanded to know why nothing was done about it. He had to look the report up, then immediately ordered an MRI. We did not like the neurologist in Vegas who i believe knew little about dementia. I had to 'pull' what little he said out of him. He did a couple reflex test, a few questions and said maybe early AD. We left our jobs there and came back to the Portland area VA. Here the neurologist did more testing (an hour or so of test questions, etc., and instead of probably AD diagnosed amnesic MCI.
The doctor in Vegas put him on galantamine immediately. I have always felt much of his problem was depression. At the time my gut told me to only give him the prozac and wait to see the results, but I didn't. My understanding is they put them on AD drugs - if there is improvement, then it is AD. If not, then it could be something else.
He will see the neurologist again in July but if any questions on the meds,etc. we are to contact his PCP. With the VA they seem to work well together. I am assuming that part of the reason we go thru the PCP is that the VA uses OHSU doctors, so he might not get the same doctor next time. We definitely will not have the same resident as she said she wont' be there then. ;-( as we liked her. I was glad to find out the neurologist specializes in AD and research on it.
We started with a PCP, who referred us to a Neurologist. He was a little concerned that it might be Parkinson's for various reasons, gait,etc. We came to Houston, he had a intestinal bleed and while in the hospital had a stroke. That brought in another Neurologist. After about 4 months, and once a month visits, he sent us to Dr. Rachelle Doody at Baylor College of Medicine. She is a renown Neurologist specializing in Alzheimer's Disease, but her group also works with the entire field of dementia. Her associates (MD's) each specialize in a different area of Alzheimer's. After the first year of 4-6 visits, we're down to 2 a year now. She was extremely thorough, and her reputation is stellar! The original Neurologist said she was among the most respected doctors in the field of Alzheimer's and Alzheimer's Research. I relate to her his reactions to various drugs, she begins on low doses and changes them at the end of 2 week periods until we reach a good place. I believe it takes a Village to treat the patients. She cannot be with him 24/7/365...so it's a team effort. I appreciate being kept in the loop. I do not practice cybermedicine, although I do read every book I can find on the subject, speak before groups in MCF's, etc. The hard facts are that they cannot cure this. Only make their lives (and ours) more peaceful. I'm just glad he is not suffering and in pain. We're entering our fifth year since the Official Diagnosis...and about 9 years since his doctors and I observed his first physical and mental deficiencies.
I am still struggling to get a definitive diagnosis for my DH. He is now on Aricept and Namenda and seems better than before he got on the medicine. I saw Charlott's comment that if you put the patient on AD meds (like Aricept and Namenda) and there is improvement, then the patient has AD. Can anyone confirm this proposition?
Sharan - I think that is a conclusion, nothing in concrete. I think it was the neurologist in Vegas, which we didn't like, that said something to that. Since there is not way to definitely know until autopsy, that is probably the best way many conclude it is AD.
I am still confused by the doctors. One time, they say - you diagnose based on symptoms and his symptoms are consistent with AD. Another time, they say he doesn't have AD. When I ask how they can say that, they say that he's young and he doesn't appear to be getting worse (not in their 15 minute appointment that is scheduled a month apart - like that is enough time to tell whether he's better or not!?). His MRIs are OK, but his neuropsych eval said his executive dysfunction and memory impairment are severe and his overall cognitive impairment is moderately severe AND that, although AD does not appear to be the likely result given my DH's age, it should be revisited if my DH continues to decline. He has been declining for 3 years, what more do they need? Arrrgh! Not yelling at you, but it makes me nuts!
Sharan - My husband was diagnosed with probably early-onset Alzheimer's at the age of 52. He had been showing various increasing symptoms of memory and other cognitive problems for a few years before the diagnosis. We were first referred to a neurologist by a general care physician, and the neurologist referred my husband to a psychologist, who conducted 4-6 hours of memory and cognitive testing. My husband performed poorly on parts of this testing (he has a doctoral degree and other professional history that clearly contrasted with some of his performance on those tests); an MRI was read locally as showing nothing unusual. We were fortunate that our neurologist suggested additional expert input (in part because of my husband's young age), and referred us to a neurologist at UCSF (we live in a relatively remote location, and so had to work out travel arrangements & expenses for this trip and a follow-up one, but the visits proved worthwhile). The neurologist at UCSF referred us to an observational study there that gave us the opportunity for evaluation by a group of experienced specialists (we spent several days going through various testing, MRI [note that the initial MRI ordered by our neurologist was read as showing nothing unusual, but subsequent MRIs at UCSF found brain volume loss], etc.); and we received the diagnosis of probable Alzheimer's after evaluation in this study. Their thorough evaluation and documentation has also proven helpful when applying for disability benefits, etc. My husband is currently taking Namenda and Aricept (and is also involved in a treatment study), and although he is showing declines in some ways, I think that these medications have stabilized some symptoms that were evident when we first sought the diagnosis.
NancyB, I suppose that a Nero is the qualified one since most Doctors refer to them when it comes to AD issues. My understanding is that it's a process of elimination thru all the testing that determines the diagnosis. Yet with AD it's still so unknown and as others have said it only truly diagnosed with an autopsy. A very smart friend once asked me during a conversation about medical stuff whats on a Doctors office sign? I was like What? She asked again, I finally played along and said Dr,John Doe MD Medical Practice, She said flip it, Practice Medicine. Made sense, they don't have all the answers and so they are just practicing.
Sharan, Has your Dh had a Pet Scan? I have been told that is one of the best test to help diagnosis. Has he been thru all the blood work? The age thing is BULLLLLLLLLL! My Dh was diagnosed at the age of 53 but of course there were issues several years before. I had a hard time at first with them on that, but after all the test canceled out any other illness, not sure what his MRI showed but after the MRI the Nero ordered a Pet Scan. We did get second opinions, have you taken your Dh and all his test to another doctor for a second opinion? I agree about the doctor spending a whole 15 minutes and making a decision based on that. Had a Orthopedic doctor tell me Dh would be fine having replacement surgery on both shoulders cause he looks fine........... HELLLLLLLLO! I was super pissed after that one. Just cause he's not drooling and slideing out of his chair doesn't mean that he doesn't have AD and that total shoulder replacement probably shouldn't be done. Again, maybe taking your Dh's test results to another Doctor for a second opinion would help get you two some answers. Is there an AD clinic in your area? RK
Do not let any doc tell you someone is too young to have AD. Documented cases are people in the 20's and 30's, it can happen. It is called EOAD, early onset Alz disease. Unless they have had personal experience w/AD or have studied dementias, most GP's do not know that much about it and if you feel uncomfortable about what a doc tells you, you should go to someone else. A neurologist who specializes in brain diseases is a good start, but make sure you know the neurologists specialty, not all are familiar w/AD. Depending on age, a geriatrician can be helpful. Sometimes it takes years to get a dx, and then a couple years later it can be changed to something else. As already stated, the only true way is at autopsy. It's just very elusive, not easy to dx, and not enough docs know that much about it yet, but sadly, that will change as more & more people get it.
Sharan, it can be very difficult to get a doctor to diagnose EOAD. The best thing to do is find a research facility that has a great deal of expertise with early-onset dementias. Try searching here:
My husband showed Parkinson's symptoms. His PCP saw them but did not diagnose, he ordered some tests to rule out other problems and referred to a neurologist. The neurologist diagnosed Parkinson's and send my husband to a movement disorder specialist. The movement disorder specialist diagnosed Lewy Body Dementia. He asked only a few mini-mental questions but my husband not only couldn't spell world backwards, he couldn't spell a four letter word backwards.
The movement disorder specialist sent my husband for neuropsych testing, but I would be a little careful of that one for people who are highly intelligent. My husband scored above normal in almost everything--he's smart enough and still able to focus enough for a short time to outwit the tests. The psychologist couldn't understand why my husband had been diagnosed with LBD. The movement disorder specialist looked at the same results and said it isn't normal to have verbal IQ 30 points higher than performance IQ and the particular subtests that were low are the canary in the coal mine for Lewy Body Dementia. I was worried that how well my husband scored on the testing was going to mean that he didn't get approved for social security disability but he did get approved on the first appeal, without us having to get a lawyer.
You have all been very helpful. Thank you so much. Here's a bit more information: we have been to a neurologist many times. He's nice and has experience with AD, but could not diagnose my DH because his symptoms are "not consistent." He sent us to a "cognitive neurologist" who also said my DH's history is complicated, but declared that he has "multi-factorial dementia." When pressed, she said that his dementia is caused by the fact he drank when he was young (even though he hasn't drank in 28 years), the fact he was exposed to toxic chemicals at work 20 years ago, and the fact he had low oxygen levels due to a heart condition that has been fixed for 3 years. Personally, the multi-factorial dementia diagnosis sounds like a fancy way of saying "I don't know." But, you see, they say additional tests would not be helpful given all the tests my DH has had, but they have ruled out everything under the sun. Still - believe it or not - they continue to say he doesn't have AD - despite his symptoms!
I am going to look up the sites you referenced, Sunshyne, to see if there's a place that can help.
Again, thank you all for being here and letting me vent. It helps to vent to people who understand.
Sharan, my husband also has a weird, event driven, form of vascular dementia. In my husband's case his heart gave out, he had a major (single car) accident on a California freeway, died several times in the hospital, and was operated on with a pacemaker all in one day. In addition he had 6 bypasses done about 12 years earlier than that. Looking back I can see early symptoms before the EVENT.
I don't think the diagnosis of multi-factorial dementia means that they are saying "I don't know" I think it means they are saying the reasons this happened are complicated and there are several of them.
There are no tests for Alzheimer's. In my husband's case he was actually "diagnosed" by a cognitive therapist who insisted he go to the right kind of neurologist and sent extensive reports on what she had seen during 6 months of therapy to both the family doctor and the neurologist. He had some additional blood tests, a report from the cardiologist, and a cat scan (no MRI if you have a pacemaker).
There are a lot of different kinds of dementia. Except for FTD they all basically end up going the same way. FTD is different because dementia drugs sometimes not only don't work, they cause really bad side effects. Basically if they can figure out what kind of dementia it is that is one thing. If they can't they call it Alzheimer's. There is no test for Alzheimer's.
Once the reversible conditions have been ruled out, and FTD has been ruled out, it really doesn't matter if you get a complete diagnosis or not. They give the exact same drugs no matter what the diagnosis is, except for FTD and reversible conditions. And there is no cure.
And because I haven't said it recently to anyone, venting is good. This is a good place to vent because it is safe and because we understand. Reading anything Sunshyne comes up with is also good. Getting yourself educated is very, very good.
Now, see, what y'all are saying here reinforces what I was saying on another thread, that THE diagnosis is very hard to get.
My husband was referred by our PCP, who is an internist, to a neurologist. He's very good, very kind, always asks how I'm doing and now that the MRIs etc are all done, or mostly so, doesn't push my husband too much. But there are a lot of neurologists who deal with parkinsons, and epilepsy and so on - not AZ-type dementia, and they're not too helpful. You also have to watch with any doctor (like the one who wanted to do the shoulder replacements) that they aren't, for their own purposes, recommending inappropriate actions.
Our PCP does still see and prescribe for my husband, because he has some non-AZ issues.
briegull, I should have said that it wasn't Dh's Nero that referred him for surgery. It was his new GP. I am thinking I made a huge mistake picking this new GP.
We haven't moved since 1970, and I feel very lucky that we've remained with the same internist practice that whole time (we did get shifted to a younger doctor at one point). Ours is very perceptive and helpful, thank heavens.
First of all! Multi-factional dementia IS a diagnosis! Most usually are. In DH's case, he has a history of TIA's that have left marks in his brain, PLUS the Alzheimer's.
Our Diagnosis was a result of one day with a Clinical Psychologist, another visit to have X rays and an MRI of his brain, Blood work in a lab, and then after study and a meeting that lasted well over an hour with Dr Rachelle Doody and her team at Baylor, who studied in depth the earlier tests, clearly explained the diagnosis and how it was proven.
YES! YES! YES! Alzheimer's Disease can be diagnosed BEFORE an autopsy. The friend who is "smart' is about ten years behind the times when it comes to research and diagnosis. IMAGINE how it will be ten years from now!!! It may be a curable disease. Let's pray it is. Not for us, but for our sons and daughters.
When my husband first started having problems, I took him to his PCP, an internist. She did all the blood tests for reversible forms of dementia and a CT Scan. After these all came back normal, she referred him to the neurologist. As my husband has a history of depression, the neurologist suggested that he be seen by his psychiatrist to rule out the depression symptoms. Well, his psychiatrist re-evaluated him, changed his meds, and after a few weeks we could tell it wasn't depression. Went back to neurologist who ordered a MRI. MRI showed atrophy of the frontal lobes. Neuro brought up FTD for the first time. He then sent my husband to neuropsychologist where he had the 6 hour testing done which showed deficits everywhere and the neuropsych basically agreed with the neurologist that it is probable FTD--I was told that you really can't have a positive, positive diagnosis of FTD without an autopsy. So, FTD it has been.
We see his PCP for regular medical checkups--cholesterol, etc. We see the neuro for those medications for his behavior, but we now only see him about every 6 months unless there are problems in the interim. His psychiatrist keeps a watch on his mood. We probably will be seeing the neuropsych this summer to check on progression. That's where we are today.
I believe AD can be diagnosed with 90-95% probability nowadays, but it still requires an autopsy for definitive diagnosis. At least, that's what they tell me at the university AD research center here.
But please note that only a QUALIFIED team of doctors can make a diagnosis with that high degree of probability. The diagnosis is only as good as the doctor making it.
Also, if the patient has another type of disorder causing the dementia symptoms, I believe the diagnosis may be even more difficult. There is so very much we don't know about disorders such as FTD and Lewy body...
This subject really illustrates how different each patient can be with symptoms all over the map. I think that GP's IM Dr's and even neuro's will order many tests so that they can rule out some other problems. My wife had a lod of AD sylmptoms but she also had episodes of nauseau, vomiting, shaing, and actually passing out. She too CAT scans, MRI, blood tests, etc. Finally,they hooked her up with wires all over her head and chest and connected to a black box on her belt and sent her home for 24 hrs. Nothing happened and they tried it again later. The episodes happened every month or two. Twice I called 911 and they took her to emergency. It was very scary and disconcerting to me and our kids. After about 9 of these episodes. finally, they checked her in to the hospital and hooked her up with lots of wires, and had 2 cameras focused on her in bed. They said they would play little tricks on her in hopes of causing another episode. The first night they kept us up until 12 and woke us at 5. They wanted to tire her out. It worked!!! At 11:00am. she started shaking and feeling nasua. I punched the nurse button and the technician looking at all of her devices said he was seeing it too. It happened again about 12. Her neuro came in about 4:00pm and said he was having trouble figuring it our until he looked at the bottom of the scree that was monitering her heart beat and noticed that it had simply paused for an extended time. He said he would show it to a cardiac dr who would probably implant a pacemakker. heart Dr agreed and did the procedure the next morning and we went home that afternoon. Weve never had another episode again. When neuro said it looked like her heart, I said I had never considered her heart. He said he had not either until he saw the missing zigs on the monitor.
So the point of this story is that they must look for other things that could be causing some of the problems. AD diagnoses are hard for all DR's to figure out.
I think they make too many expensive tests but Medicare pays for it and they have an obligation to test for all possibilities.
pamsc - my dh was finally dia. with Parkenism with AD and Vascular Dementia. The Neuros said their first thought was Lewy bodies but since he wasn't hallucinating they discarded that idea. I am making an apointment for this spring a year later and wonder if they will still keeping the diag. the same.
Sharan - in my reading I have read where binge drinking, even if not done for years, can lead to dementia. I think back to my husband's binge drinking in the Navy and a few years after we were married we would go out on Friday or Saturday night and hang one on - I wonder what damage was done way back then.
Sleep apnea can be a cause for low oxygen levels especially if he is not using a mask. Before his heart condition was fixed, who knows what damage was done to the brain from low oxygen.
My husband also worked as a printer for over 40 years. I always feared it would cause lung damage, but you post has made me wonder if it was a contributing factor to his memory problems.
Point is - we don't know all the effects of our early years lifestyle or events. I truly believe we are seeing that now with increases in so many diseases. With AD, the increase might seem more because of more babyboomers and living longer. We don't really know.
I would take the multi-factorial dementia diagnosis to mean his dementia is caused from an accumulation identifiable things which in some ways could be a comfort to know vs 'not knowing why or how did this happen?'
Dementia is dementia: no matter what label, still is an ugly, cruel disease.
My husband's problems first started with being light headed when standing. After about 2 weeks of this we went to the doctor, she first thought he had an inner ear infection, treated him for that, however, he still had the problems. Then all of a sudden he had this tingling burning feeling that went up his arm & into his chest. Back to the doctor, she sent him to a Cardiologist...everything was fine. Symptoms worsen, so she scheduled an MRI thinking maybe a brain tumor. MRI was normal..great new, however, then he started having Absence seizures, with memory problems. So off to the Neurologist...she ordered another MRI, PET Scan, Blood Work, CT Scan, Lumbar Puncture, numerous EEG's, still no real diagnoses. All along his memory getting worse. After 3 Neurologist telling me that they thought he was to young for Alzheimer's, I begin to think I was imaging things, even though I knew I wasn't. His memory just kept getting worse every year. I finally ask the Neurologist in July of last year if he would order another PET Scan, that was when he was diagnosed with FTD. After 6 years of testing we had a diagnoses. I guess they were correct that he didn't have Alzheimer's. I now wonder why they never thought of FTD.
I don't have enough information to understand the difference between Multi-Factorial Dementia and AD. Is there a real difference? Assuming the "multi-factorial" diagnosis is correct, will my DH still progress through the AD stages? I have no idea what to expect. If dementia is dementia, then is the overall progress the same? This is all so confusing.
Imohr: Not everyone with Lewy Body Dementia has hallucinations--I've heard the figure that 80% do. But it is certainly possible to have both Parkinson's and Alzheimers and vascular dementia.
Alzheimer's is a disease. Vascular Dementia happens when there is some kind if insult to the brain, usually a stroke, but cardiac problems can cause it too. Vascular Dementia is one of the Multi-Factorial Dementias. So basically you were told that it was a dementia, but not Alzheimer's.
By the way, some Vascular Dementia patients turn out to have Alzheimer's as well. In fact it isn't unusual.
... and the symptoms that occur in the different stages occur in all the varieties, not all in each person, more hallucinations in one, more aggression in another, perhaps.. but it's all over the map for all of them. I found a set of symptoms for VD today that sounded just like the stages in AZ. I think the best thing we can do in this group - apart from supporting one another emotionally - is to give practical advice. Incontinence is incontinence, aggression is aggression, memory loss can be handled much the same way with every one with any sort of dementia.
briegull-you just said what I have been thinking. It is the symptoms we have to deal with-not the name of the condition. Dementia is dementia-except when it's not. Are we all living in never-never land.
I agree with all of you....who cares about Labels? and, frankly, I expect the day will come when I won't be taking him back for his semi-annual evaluation. If it's not improving his situation...and it becomes a huge hassle... driving an hour + to get to a major medical center, seeking out parking, (valet is usually full!) hiking (hurry hurry) to the medical tower, riding Elevator 1 to the 3rd floor, (hurry) changing to Elevator 2 to get to the 18th floor, (hurry) and then waiting...and waiting.. For WHAT? Maybe another year, .. does that make sense?
I took my wife to a teaching Hospital that had a nuerology department and research department. Getting into one of the studies, they pretty much confirmed the diagnosis her first nuerologist gave. Once a team of doctors reviewed her test including Hi Res MRI I felt they reached a good diagnosis
I've chosen not to take my husband back to the neurologist anymore. His family doctor can and will control the dementia meds and has told me that if I need anti-anxiety or anti-psychotics he prescribes those too. He doesn't need any more mini-mentals. He is already profoundly demented. Why make him unhappy over the whole thing?
Also, although my husband doesn't have Alzheimer's he fits the classic stages of Alzheimer's. He has all of the symptoms of stages 2, 3, 4 and 5, and the cognitive and speech symptoms of stage 6. His diagnosis is vascular dementia, but he isn't a classic patient for that either since there has never been a stroke or heart attack.
Starling, you are doing exactly what I was talking about. He's not going to get 'well' by going to this highly regarded doctor in her ivory 18th floor tower.... and it's so hard for us to go there. I read many of the comments about continuing medications, etc. for all the things 82 year olds have, and I've secretly wondered why we go through all of the hassle to get him to take all the pills he has been prescribed (beyond Aricept, Namenda and Seroquel). Blood pressure, anti acids, blood thinners, beta blockers, flomax, stomach medicine, etc. etc. I guess I would get in big trouble if I just stopped giving them to him. And again, dementia is dementia. Who cares about the particular strain or type they have. We just gotta love 'em and try to keep them as comfortable as possible.
really probably the only real reason to know precisely a diagnosis would be for future generations to know what is in their genetics maybe..you know medical forms always ask if there is such and such disease..dementia is dementia and its terminal any way you name it. plus maybe the meds would be a reason to know which ones could be prescribed for the best outlook. we had diagnosis of VaD/combo AD but i see things that resemble FTD sometimes too as well as LBD as DH has lots of benign hallucinations. not as clearcut as they think. divvi
I have often wondered if the doctors have ever spent a week with a dementia patient and witnessed what we see regularly. They will stop in a hospital room where the patient is sedated, or not having challenges, but to be there day and night for a week...should be part of their training. I wonder if they really, truly understand the ins and outs of dementia. My DH is on his best social behavior when the doctor is in the room. Of course, he lashes out at me before and after she appears. For the docs to see patients only in their offices, and then to read about their struggles and behavior, is NOT EVEN CLOSE to understanding what goes on 24/7/365.
they know-- they turn a blind eye like everyone else. they worked a time in psyche units while in med school. my son is a dr and told me "mom once the patient has AD or dementia its a lost case. there duty to do no harm isnt in play as the harm is done.. not much to do for them except every 6mos review meds -
Can you confirm that dementia is dementia and that all dementia is terminal? A part of me believes that is true, but I am still not sure. If I knew that was true, then that fact would help me bring some closure / clarity to my expectations.
Divvi - after I pushed the button, I saw your e-mail stating that once the patient has AD or dementia, its a lost cause. It sounds like it answered my question. Still, your confirmation would help.
Sharan, I was told by DH's neurologist that AD (don't know about others for sure!) is a degenerative brain disease. That being said, she pointed to his MRI and showed me where the white areas were. That was brain tissue that had degenerated. The disease will gradually progress, and usually moves from the rear of the brain to the front. (Remember - this is A.D.) I believe there is a video of the brain on the Alzheimer's Association website that shows how the degenerative process moves and what is affected as it does. (as a general rule). Once the brain tissue has died, it cannot be restored. Therefore, I agree with Divvi's son's blunt analysis. The Alzheimer's site has information on all dementias....check it out.
"Multi-factorial dementia" does not seem to be recognized as a diagnosis by the medical community at large. Certainly, if you google for it, you'll get virtually no hits from authoritative sources, regular google or scholar.
Sharan, to my mind, there are a number of reasons for pursuing a diagnosis by a highly qualified team.
(a) There are a number of syndromes which can cause dementia symptoms that can be treated and partially or even completely reversed if properly diagnosed and treated before too much damage is done. Many doctors are unaware of these. If the team that is currently trying to diagnose your husband can't figure out what's going on, I'd be looking for a specialist who can.
(b) The medicines that can/should be used may differ, depending on the type of disorder that is causing the symptoms.
(c) The symptoms that are most likely to develop, the way in which the disease progresses, and the average rate at which the patient declines do differ, depending on the type of disorder that is involved.
(d) There is a possibility that the diagnosis would affect the financial assistance you can get for early-onset dementia patients.
Sunshyne - Thank you for your summary. Your reasons are among the reasons that I keep pushing for an answer. We have been to a lot of different doctors over the last few years, the last one being the "specialist" who said my DH has multifactorial dementia. I, too, googled it and found nothing helpful - especially along the lines she was talking about (that he had a fragile brain due his having drank heavily as a child (alcoholic, but sober for 28 years) and that exposure to chemicals at work 20 years ago combined together with possible oxygen deprivation during the period before his open heart surgery in August 2005 (no heart attack, by the way). I pushed her when she claimed my DH would stabilize now (in January) because he had been declining for over 3 years straight. Her explanation was that he was not currently having oxygen deprivation (how she knew that is beyond me!) and the other events are in the past so he should stabilize. IF that were true, then he should have stabilized AFTER the heart surgery in August 2005 - not actually developed symptoms and gotten worse SINCE August 2005. The doctor also said my DH does not have AD. Here's the kicker: She then suggested I call a lady that had an EOAD support group and said that I would have a lot in common with her - that the 2 of us should really talk. Well ... I don't know if the doctor knows it or not, but the lady she referred me to had an autopsy of her husband after he died and her husband did have AD (although she had come to believe that he did not have AD before he died - I believe she got this misguided opinion from the doctor I went to, but have not been able to ask the lady because she hasn't called me back - I am guessing she does not want to talk). Short story: the doctor who gave me the "multifactorial dementia/not AD" diagnosis likely told the other patient the same thing and she was wrong.
Bottom line: I am definitely looking for a second opinion. Thanks to some websites provided yesterday, I now have an appointment at University of Texas Southwestern (a research hospital in Dallas) on Friday with someone who seems to make a lot of sense. When we spoke and I described my DH's situation, she agreed that the diagnosis to date is not enough. If they have ruled out all other causes/conditions (which I believe they have), then it is likely AD. I did read up on Vascular Dementia yesterday. My DH's symptoms are splotchy, but he has had 2 MRIs that showed he was within normal limits and no strokes. However, the fact that he had his left artery in his heart 70+% blocked and his LAD 99% blocked and a 3rd artery 66% blocked in August of 2005, he could have some blockage in his brain that might not show up on an MRI. His carotid arteries (the main arteries to the brain) were, however, only 15% blocked. So ... who knows. The doctor/researcher/diagnostician at UTSW seemed to think that FTD might also be involved because the neuropsych eval suggested that the majority of the damage is to my DH's executive function and memory impairment with more of the damage being both anteriorly and on the right side of the brain.
from what i understand the dementia is a degenerative brain disease and eventually will affect the areas of the brain that perform critical body functions. the order that preceeds this is random depending on which disease your spouse has and how the brain areas are affected by the disease and what order.. cells dying are not replaced. it is a very blunt analysis and unfortunately true. our spouses will succumb eventually to the disease or a derivative of its attack on the body. i have found drs are quite blunt as they have to be to avoid becoming overly sentimental while treating cases that are terminal. its defense mechanism i think, as they are humans too. they dont want of offer false hopes when there arent any at this point. divvi
I was thinking that the fact my DH has central sleep apnea (with his brain forgetting to tell him to breath) and his shortness of breath that is not dictated by his lung condition (he does have mild COPD, but the pulmonologist says the shortness of breath my DH experiences is NOT justified by his medical condition) may mean that some of the damage being done to my DH's brain may be in the area controlling breathing. It is a morbid thought, but I have thought that it might mean that he will simply stop breathing one day - hopefully before he gets well into Stage 7. Like everyone else here, I don't want to see my DH suffer any more than is absolutely necessary!
sharan many of us are praying for alternative ways for them to go way before stage 7. my DH suffers cronic uti and takes antiobiotics daily. without them...well he would succumb to probably sepsis of kidneys within a short time. and also high blood pressure. at some poiint i pray these may have a play in how we offer him a way out before stage 7..its quite disturbing but we have to be realistic and know they would want us to make these decisions in their behalf. there are others here who have strong healthy spouses with NO other medical issues only the dementia..so in a way i feel fortunate there may be another choice if needed. divvi
Sharan, yes, do look for a second opinion. If you get pretty much the same answer you will know you did everything you could do. And if you get a different answer, that also is a good thing.
I, also, pray that when the time comes he will go gently and without pain.
Up thread the question of keeping them on other meds for things other than dementia came up. Right now my husband is on all of his old meds for his other medical problems. BUT his doctor and I have talked about taking him off them when the time is right. The time will come when we will take him off everything, but I think I'll be waiting until stage 7 just because of quality of life issues.
Sharan, LIFE is terminal. But yes, so is dementia, eventually. What I suspect you haven't come to terms with yet is that SO FAR, it isn't REVERSIBLE except in certain special cases. You are still, somewhere inside, hoping that if the diagnosis is made, something can be done to CHANGE the outcome.
And as Sunshyne says, that is sometimes the case. UTIs can cause confusion for those WITH DEMENTIA, so clearing those up will help. Sometimes draining fluid on the brain, BPH, can help. Sometimes the thyroid being out of whack can be rectified. So what ANY neuro worth his/her salt will do is check the thyroid (blood test, probably caught on routine physicals for anyone), try a one-time draw of spinal fluid perhaps to see if that helps.. etc. IT's a process of elimination. But once the obvious has been eliminated, then the exact diagnosis may or may not be helpful. Aricept makes FTD patients more aggressive, but doesn't agree with a bunch of others as well. Seroquel works fine for many, makes my some more aggressive. Etc. Trial and error. Process of elimination. For everything, including the diagnosis.
Briegull - You are absolutely right. A part of me is still hoping to change the outcome. The thing is that the majority of me knows that the outcome will not change. He doesn't have any infections (UTI or otherwise), does not have fluid on the brain (2 MRIs were "normal"), and thyroid is normal (many tests confirm that his levels in all regards are normal except for blood pressure and Cholesterol). So, there aren't any ways to change the result as far as I know - regardless of the diagnosis. My DH is on Celexa, Aricept, Namenda, Seroquel, and Risperdal as well as Suboxone for pain, Enalapril (blood pressure), Uroxitral (enlarged prostrate), Vytorin (Cholesterol), vitamins (multivitamin & D), Fish Oil, Garlique, MSM/Glucosamine, and Vinpocetine. He is also on a V-Pap (external respirator) with oxygen and Combivent (for mild COPD). I had him trying the Coconut oil, which seemed to help for a while, but he stopped taking it and I have to admit that I got tired of reminding him. I haven't really seen much difference since he stopped taking the Coconut oil so ... I stopped pushing it.
I am not sure what, if anything, else could be done with a more concrete diagnosis. I do, however, think that it would help to quiet the still small voice within that keeps hoping my DH is not really really dying. That's the part of me that makes me nuts because I start hoping he will get better every time he has a good day or remembers something that surprises me.