Nope, I wasn't suggesting your husband has MCI. You asked what MCI stands for, I knew what it stood for and found a bit more info for you. (And learned something in the process, because I'd been under the impression -- heaven only knows where I got it -- that MCI always eventually led to AD.)
I poked around a little bit about confabulation, and as far as I can see, there have been very few studies on it, at any stage of dementia -- I didn't even find a uniform definition for it -- so I don't think you're going to find any clues for a do-it-yourself diagnosis there. And anyway, AD patients just NEVER follow any set pattern, so even if confabulation is rare in mild AD, your husband could be one of the unusual ones. Certainly, some people have seen confabulation in the early stages of their loved one's AD, so it cannot be used to rule OUT Alzheimer's.
The financial problems, though, that is really classic early-stage AD. So is the confusion. So is the memory loss. From what you've said so far, I'm not so sure your husband is still early stage, anyway.
But if you're looking at survival, does it really make a difference? I mean, if you thought you would feel better about everything if his behavior were due to illness, and you could love him and stick it out under those circumstances, then diagnosis is important. If all the stress you've been through, and his thoughtless indifference to your financial wellbeing, have killed any feelings that you originally had for him, and you're terrified about your own future (very understandably) if you stick with him, and he refuses to let you have any real say in the matter, then does it really make any difference whether he has dementia, or what type it might be?
Sunshyne, you are so right. Well, I found a study from a university in the U.K. that said that confabulation was found in the early stages of AD. I'm thinking it's atypical. Both of you confirm my suspicions.
No, it doesn't make a difference. I can't afford to stick it out. I don't have the resources to work full time to support myself and hire people to care for him and keep my sanity. Our marriage is divided into stages. Stage one: Turn the duplex into a single family home, lasting over a year, with sawdust, etc. all over. Stage 2: Shortly thereafter he has cancer which I nurse him through after over a year of renovations. Stage 3: He sits on his butt playing the stock market, I work 50 hours a week. Stage 4: No money left, let's jerk Val all over the place. Stage 5: Val realizes she's in trouble, spouse is not normal, has to figure it all out.
I haven't followed all of this carefully - but since you've been married 9 years, how much further until it is 10? You don't get social security benefits without ten years of marriage, which might be something to consider - I don't know.
Oh, my s.s. benefits are much higher than his. He will the one to benefit, since we will have been married 10 years next April. Thanks, but again, that's not a benefit to me.
Yes, 10 years is still a benefit. If he happens to pass away, before your retirement age, you will be able to collect widows benefits at the age of 60 as I have done. My DH passed away in Dec. 07, and I am 61. I receive all but 250 of his retirement benefit. My benefits are reconsidered when I reach 62 or 65 whichever age I choose to do it. Something to think about if you can put off divorce until 10 years.
Val, do you by any chance have a Durable power of atty for each other? probably not from his actions so far, ccould you get one at this point it helps saying we need to have one incase for each other. then you can change yours later. if he is indeed AD and non diagnosed you will need this to be able to handle anything that is 'his' later thats in his name if he becomes unable. i think from what you've said so far, yours isnt a marriage of love or even financial 'convenience' anymore-would it be prudent to tell him you are considering leaving? sometimes that can push them into cooperating more. i did when my DH wouldnt give up driving until i said i wouldnt lose everything if he would hurt someone. it worked. if you cut your losses and seek legal advise and then eithr sell your own home and move into something smaller or an apt.? and maybe some cash like you say from the lost salary? i just hate to see this happen to anyone but you have to take the bull by the horns now.
Val the only thing I'm going to chime in here with is that if you are going to leave him, you need to do it pretty quickly and get on with your life. One of the things that tends to happen with this set of diseases is that you get used to the new normal if it stays stable for a while, and then you tend to drift. It is especially true if you have been under tension and stress and because you are so tired you can't get yourself moving on anything.
This is a problem all of us seem to have in one way or another. Right now I don't seem to have the energy to make a phone call to get a new credit card authorized or to call the company that can fix gas fireplaces to have a simple repair done (not a dangerous situation or I'd be on it). I'm forcing myself to go out and practice driving because I drifted as long as my husband could drive and almost lost my ability to do so. I'm just barely at the point where I can drive on a highway for half an hour, and I've only done that once since today's attempt at practicing got shorted because there was an accident up ahead and it made sense to get off at the next exit.
My point is that if you are going to leave, don't allow yourself to drift. Collect information. Talk to one or more attorneys and if you are going to get out, get out.
I'll get back to all of you wonderful people tomorrow. Lots of thinking to do.
Starling, I so appreciate your energy to speak to me. I wish I could do something to help you. I still have the fighting spirit. Well, let's say I have regained it. I have been that tired. From an energetic woman to last year someone who could barely move off the sofa. It was a struggle to go downstairs & get the mail. I didn't bother, I let him do it when he remembered. I don't want to be where you are, tired & beat, and that is possible. I so appreciate your input. Sending you love, light and hugs. I know the energy this posting was for you. Been there. But this year I was able to walk 6 miles with my son in NYC, have fun. So I know it's in there somewhere.
You are so right. With each new change, I adapted. Starling, you have really touched me. I am listening. Why is it too late for you to get out?
Oh, boy, it just hit me. The part about home equity loans ... new worry. Under some circumstances, the wife may be responsible for her husband's debts. You should check your credit reports immediately, see if there are credit cards or loans being reported under your name that you do not recognize, also see who's been checking your credit on a regular basis.
Val, I've been married for 47 years. I was 19 when we got married and I'm now 67. Getting out was never something I even thought about.
Being married for 47 years is one thing morally, ethnically and just plain what you want to do. Being married for 9 years when there never really was a partnership is quite another. For some people, where the partnership and love were there, even a year or two is enough. But if he wasn't acting like he was demented you would already be out of there.
My husband has been living on borrowed time for 18 years (6 bypasses and 3 cancer surgeries) and again for almost 5 years (bad car accident due to heart stopping, died in the hospital 3 or 4 times, pacemaker, 6 broken ribs and now vascular dementia). Frankly I pray for a major heart attack or stroke to take him gently. At this point he is still enjoying life at least some of the time, but pretty soon that won't be true. I'd like him to go gently before it all becomes a living hell for both of us.
Yes, I'm tired, but I'm also teaching myself to notice the little joys in life. You can choose to be happy even when things can't be fixed, and I choose to be happy as much of the time as possible. And now, it is time to go to bed. Good night.
Sunshyne, I guess I needed to know if my husband was just becoming a jerk or if he was ill. Being ill has ethical issues as far as leaving, which I needed to weigh carefully. Having said all that, can you give me a clue as to why you think he may be past the early stage?
Everyone, when I thought he might just be being a jerk I considered leaving. But that was before I gave up my job. My plan had been to stay 2 years to pay down the mortgage on my house, so I could live "rent free" in my house. That way I wouldn't be vulnerable if I were to lose a job, as so many have in this economy. But now, with Jane's extremely important input, I see that I could lose my house totally if not divorced. So I don't know what to do. I know I need to divorce him to save myself, my house. I guess it's just a matter of timing it to my advantage.
I've weighed the ethical/moral issues. If I can't get him to cooperate with me, then I'm on my own. If I'm on my own, then I have to look out for myself. Just hope I'm not creating negative karma.
Like you all have said, I need legal counsel. Will get to that after we move, if he doesn't mess up the closing. I've had stangers marching in & out of the house for a year now. Enough is enough.
You haven't said enough for any of us to say that he is or is not past an early stage. But you are so upset, that it almost has to be past that early stage.
So here are some questions that might indicate mid-level dementia: 1. Does he know what year it is? What month? The day of the week? 2. Does he seem to be having word finding problems? Has he lost the words for some basic items, like the mail or newspapers? 3. Has his personality changed a lot from a few years ago? (This question is a symptom of brain damage the earlier two are just general dementia.) 4. Has he begun to lose things and is he blaming someone (you?) for stealing those things? Does he go searching for things and can't tell you what they are? 5. Is he pacing up and down? 6. Is he no longer able to do the job he used to do? Did he lose all that money because the stock market went wonky, or because he no longer could handle the trading? Because of what went on in the stock market, the answer could be both or either one. 7. Has he stopped doing things he used to do all the time? My husband stopped cooking. He didn't want to play poker with the guys here when the penny poker games started. He decided to give away the novels he had saved up for retirement. Etc.
You will find a list of symptoms for each stage at the Alzheimer's Association website. I think you will find it interesting. And they are excellent people to call on their hotline and ask for help.
Val, it's mostly gut instinct. And it's a pretty uneducated gut in this area. But still, I wonder.
In my (very limited) experience, mild AD is more subtle than what you've told us. The degree of mental impairment that he's showing -- losing absolutely everything on the stock market (that takes a lot of time and many episodes of bad judgment, and a pretty severe loss of mathematic and financial skills -- sure, the market has been bouncing around, but not enough to lose everything unless you're really, really bad at trading) at the same time he's obsessing about trivial costs like heating bills, not understanding the current housing market to the point he's planning to "flip" the new house, being unable to keep track of the things that needed to be done for the house sale to close, going to the wrong place for an appointment -- that's quite a bit.
Plus the personality changes, I don't think they are typically as significant in the early stages as what you've described. If you look at the seven stages of AD, some of what you're describing (he sounds unreasonably suspicious, and one could consider the "confabulation" to be delusions) is listed as stage six, severe cognitive decline. Of course, different patients develop different sets of symptoms at different stages, you can't go just by that. Still, you've been trying to get people to tell you that the symptoms you've observed, such as confabulation, are seen in the early stages, rather than questioning whether the confabulations might mean that your husband might actually be further along than you think.
Plus, despite his decisions to move and fix the houses up, etc, he seems to be relying on you to do a lot of the detail work. And he apparently has been relying on you for a lot of other things ... you said that after the sale fell through, for example, that you had to find the place for you and he to live, pack, put the stuff into storage. You said you thought maybe he was "too lazy" to get the house ready ... AD patients lose initiative. They may still be able to do something, they just don't realize it needs to be done. That's actually a symptom.
Or AD patients avoid doing tasks in order to hide their inability TO do them.
Your husband is now working out of the house, isn't he? and you said nobody else can see the way he behaves because of it. That might be compensation, a way to keep other people from finding out how many problems he's having.
Plus the length of time it's been since you noticed enough problems with memory loss and confusion to talk to a doctor about it. You called it an "extreme" case of confusion. Three years is a fairly long time to still be early stage, especially without meds.
I suspect that he's shown other symptoms, only they come and go so you haven't been thinking about them very much. Perhaps you've gotten so used to the topsy-turvy world that some symptoms have become "normal" to you. Perhaps he's had so many health issues in the time you've known him, that you don't really know what is "normal" for him.
And then, the impact that his illness has had on you ... I don't think the way you described yourself last year is a woman dealing with early stage AD. (I'm so glad you're managing to pull yourself together again. You've been through SO much.)
I have heard that it's fairly common for caregivers to underestimate the degree of impairment in their ADLOs.
I would consider my husband to have mild AD, but the experts sure don't agree with me. The tests show a lot of problems that don't usually surface in his day-to-day life. And I've been his study partner in the longitudinal study and the clinical trial, and so I think about things like this, and I get "tested" on them as part of the studies. Still, I was floored by how poorly he did in the last longitudinal study exam.
That, plus the fact that you haven't had anyone "in authority" tell you what is causing your husband's problems, may be making you think he MUST be better than he really is.
But again, does it really matter whether he's in an early stage or more moderate AD? Those are just words. Your husband is the way he is, no matter what label you put on it.
Yes, there are ethical issues associated with making the decision you're facing. We all understand exactly what those are. But those have to be balanced by what that illness is doing to you.
Yes, his personality has changed a lot from a few years ago. Yes, before he would have known how to pull out of trades. It wasn't the market.
There is nothing else on the list I can say I can say yes to.
I've been to the site, of course, but of the 10 early stages, I can't say yes to all of them. I have read EVERYTHNG on that website.
Jane is right. And I want to thank you again for your forewarning. I told a couple of friends about Medicaid being able to take my house & they freaked.
I will just have to face this & do what I have to do. Before I thought, stress?, etc. The world of AD is a new world. I hope that research can quickly find a way to spare people from it. I will stand by his side as a friend if he allows it.
For some reason my responses come on 2 pages, so I don't see everyone's at once. I hear you.
I guess I have just begun to face the seriousness of all this. Just begun. All the feedback has made me realize. I actually have been surprised by each "episode." My friends used to ask, why are you so surprised? I guess I just couldn''t believe it.
As for responses being on two pages, when one thread gets too long, then it goes to a second page. And even to a third if we REALLY get going.
But back to stages ... I'm a little confused ... ten early stages? Some people categorize AD in three stages (which I personally think is the best way to do it -- the symptoms fluctuate so much I think you have to use broad categories) and some use seven, but this is for going all the way from no AD (stage one) to very severe / late stage (stage seven). I haven't heard of ten early stages.
Even when you settle on one method, different web sites will list different symptoms in each stage. And even THEN, our ADLOs may have some symptoms listed under several different stages, but not have other symptoms in each of those stages.
If I'm using seven stages, I'll use the Alz Assoc list at http://www.alz.org/alzheimers_disease_stages_of_alzheimers.asp
Now, one of the problems with using a scale such as this is that YOU may not see a particular symptom, but that doesn't mean it isn't there. For example, how often have you asked your husband to count backwards by sevens? And although my husband and I are together 24/7, there's only been one time that I've heard him have trouble recalling the name of the college from which he graduated -- that happened three years ago -- and he's always remembered his address and phone number. Those are all Stage 5. But once in a while, my husband pulls a Stage 6 symptom on me. For example, he always dresses himself and the only trouble he has fairly regularly is that he likes to wear sweaters, and he always gets tangled up and I have to straighten them out for him. (He could eventually do it himself, it's just less frustrating for him if I help.) But one day, he tried putting on a second shirt, rather than a pair of pants. He was very hesitant, clearly knew there was something wrong but he couldn't figure out what. That was several months ago ... he hasn't done anything like that since then. If I hadn't been in the room at the time, I probably wouldn't have known about it.
It depends on the circumstances as to whether they'll exhibit a symptom. We were talking about stress on another thread -- several people said their doctors deliberately stress patients during the MMSE to detect problems. Unstressed, the patient will do better. My husband's symptoms are very sensitive to stress. For example, one of the Stage 6 symptoms is a tendency to wander and get lost. My husband doesn't do that under normal circumstances, but if we travel, he'd be lost in an airport in a heartbeat if I didn't hang onto his belt. Literally.
I think it was Starling who said she would look at all the symptoms in a given stage. If her husband did not have ANY of them, then she would put him in the stage just before. I think that's a great way to do it, except I'd tend to look at symptoms that he displays fairly regularly, not just once in a blue moon like the two-shirt episode. (Which may be what she said, I don't remember exactly how she phrased it.) So I'd place my husband as Stage 5.
But people just meeting him haven't a clue he has a problem. He likes to go to CoCo's every Friday, and I think even our favorite waiter, who waits on us almost every week, doesn't know my husband is sick.
Sorry, meant to say the 10 early stage SYMPTOMS given on their web site. Last year, when we put 2/3 of our stuff into storage, moving from a 4 bedroom house, formal dining room, etc. into a 2 bedroom apartment, my husband took a wrong turn to get back to the apartment. (The movers had taken most stuff there, but we took some things over afterwards.) He insisted that we were going in the right direction. Finally I convinced him to turn around and go the other way. (grrrr.) Next time he went by himself, and made the same wrong turn & told me he had stayed on that wrong road for over an hour & that's why he was late. "I got lost."
Oh, are you talking about the "10 warning signs of Alzheimer's" on the "Symptoms of Alzheimer's" page? At: http://www.alz.org/alzheimers_disease_symptoms_of_alzheimers.asp
I hadn't seen that before.
That isn't a description of mild AD. Some changes in memory and function are normal as we get older, so they are trying to give examples of things that are normal and nothing to worry about, versus what might be a warning sign that someone has a problem. You don't have to have all of these to be early stage ... just having one would do it. Actually, the way some of these are described, they sound more like moderate AD, not mild.
My husband was diagnosed with moderate AD three years ago, and I wouldn't have "said yes" to most of these back then. For that matter, I wouldn't say "yes" to some of them even now. For example, he doesn't ever put things in unusual places. Very recently, he has sometimes put dishes in a different cupboard from the one we've always used, but the "new" place he picks makes sense -- like putting a Tupperware bowl in with the soup bowls of the same size. And so far, thank heaven, there haven't been any of the changes in mood or changes in personality. Yet he sometimes shows signs of developing Stage 6 symptoms (Stage 7 being the last, and worst, stage).
The Seven Stages, that are used to loosely categorize the degree of severity, are at this link:
I think it was Starling who said she would look at all the symptoms in a given stage. If her husband did not have ANY of them, then she would put him in the stage just before. I think that's a great way to do it, except I'd tend to look at symptoms that he displays fairly regularly, not just once in a blue moon like the two-shirt episode. (Which may be what she said, I don't remember exactly how she phrased it.) So I'd place my husband as Stage 5.
Yes, I was the one who said that. Like you I basically look at symptoms that are displayed regularly. My husband is also basically at Stage 5. He has ALL of the Stage 5 symptoms. And I use the same description of the stages as you do.
However, I'm also aware that every once in a while he does a Stage 6 symptom. He has only failed to know who I am once, but it did happen. He has some verbal issues that might be Stage 6. He has been known to put the newly washed and empty plastic containers in the crisper drawer in the refrigerator and at this point has forgotten where they go totally. Putting the leftovers away used to be one of his jobs, but he no longer can do that job.
Basically he is entering Stage 6. And it is faster than I expected. I went looking for other descriptions of the stages because Jane said that some of the things I was describing were Stage 6 symptoms. And it turned out that she was right.
I've been reading this thread with great interest and closely listening to how Starling and Sunshyne identify stages. And I could use some opinions or advise. My husband has exhibited signs for several years, and gave up his business in 2005, having to sell at a loss. Anyway he had been seeing drs. for years before for extreme tiredness and lack of attention, etc. No mention of dementia, perhaps, because he was still in his fifties and hid many problems. He was treated for depression, migraines, sleep apnea and over all this time there was a steady decline in abilities. Once he was home , I began to notice how severe his impairment was. We tried all kinds of things to help him organize and remember things. Anyway he was finally referred to Duke for memory testing and the final diag. was MCI consistent with Alzheimers. They said he did pretty well on the testing and encouraged us to start using organizational tools to help him.... I couldn't believe my ears because we had thoroughly discussed that he no longer could remember to look at lists , often said he couldn't remember where they were... His neurologist was encouraging when he said that all MCI doesn't turn into AD. However, since that time my husbands decline has sped up . He is now on Aricept and Namenda and the last time we were at drs. he could not draw a square. My question is when does MCI become AD? My DH no longer can get to his e-mail( spent a life time with computers) can't use a cell phone , can't use several things around the house but only because he says "they are broken." He lacks the ability to plan and intiate an activity and does little but sit in front of a tv and change stations . His repetition has increased and when he is anxious he can repeat a question endlessly. Doesn't this sound more like stage 5 going to six?
Anita, I really feel for you. I think it would be best to start a new thread, because I think everyone who could help me has already put in their input and your questions may be missed. Take care, Val
I think thats why many of us use the sliding 7stage one like i think we are in the 'late 5,early 6' or mid-late5, or in our case mid-late 6, there is never an open-shut case since things can vary repeatedly. our mid stage 5 seemed to lag for yrs then we finally declined some. then again on good days DH does so well i think hes back in late 5's.. he also has vascular dementia with AD possible.
I'm not dealing with MCI or Alzheimer's (officially anyway) but Vascular Dementia because the damage showed up on a CAT scan and could be dated to the accident which also resulted in my husband getting a pacemaker. His heart stopped several times that day and he died. They kept bringing him back until they could get the pacemaker in.
Nevertheless, I think MCI is just a name for early stage dementia. And once you have Stage 5 symptoms, they might as well call it Alzheimer's already.
I think that with both MCI and Vascular Dementia, there is the possibility that it won't progress, but once it has progressed, it is enough already. Your husband is already on the Alzheimer's drugs. So is mine. No doctor has mentioned what stage my husband is in. I figured that out for myself, and he might actually be in Stage 6 and not Stage 5 because his verbal abilities are going down faster than his physical abilities. (For which I am very grateful.)
When we get to the Hospice stage, that might be a problem. But right now it is what it is and we are doing the best we can.
I don't know squat about MCI -- my husband was way beyond that point by the time I finally convinced him to see a doctor. I just knew the term and looked up the definition for Val.
There is a lovely lady at the UCSD Alzheimer Disease Research Center who is studying MCI and the relationship between stress and the triggering of AD:
Guerry M. Peavy, PhD Associate Project Scientist, Department of Neurosciences Assistant Clinical Professor,Department of Psychiatry Shiley-Marcos Alzheimer's Disease Research Center University of California, San Diego 8950 Villa La Jolla Drive C-129 La Jolla, CA 92037 Ph: 858-622-5852 Fax: 858-622-1012
email: gpeavy@ucsd.edu
There's a short bio for each of the staff there, including Guerry, at:
I would suggest you speak with her. She has been very nice to me. (Since my husband's symptoms are so sensitive to stress, I had hoped to get him into one of her studies. Unfortunately, she wasn't enrolling people who had already been diagnosed with AD, only MCI.)
Your husband does sound as if he's progressed quite a bit. Still, there might be other factors causing the symptoms you describe. I know it can be very hard to get doctors to commit to a diagnosis in someone as young as your husband -- Guerry might be able to provide you with guidance on how to determine what is going on.
Anita ... on another subject: That paper, Understanding the Dementia Experience, talks about Spaced Retrieval, a training method that allows someone to help a person with AD develop new habits and learn or relearn simple tasks. I would assume it could be used to help ADLOs use organizational tools like lists and calendars, if they were kept simple enough. The description begins in the last full paragraph on page 9. I haven't had a chance to look into the method yet. Looked very interesting, though.
Joan put the link to the paper on the front page of this site. It's currently in her Friday June 6 Update from the Conference.
Thank you all...How wonderful to be the person who asks questions and gets them answered....
Sunshyne,I have been reading and re-reading the Dementia Experience ..theres a lot of good information there. I'm going to try to contact the the woman in UCSD. Thanks for the information.Perhaps she can shed some light on my husbands condition. Personnally I don't think my husband experiences MCI. Early on I thought it was AD, because of the continual loss process.It is so frustrating that drs. seem to know so little. And of course a part of me want's answers as if they will truly help....I want to do everything I can for my husband . When we last saw his neur. I asked if there was more I could be doing. He answered that at this point we needed to see if the namenda would help....He's been the one who finally helped us get to Duke and we have really liked him very much. I feel like he knows its AD but hasn't put it into words...Do you think that's possible? Starling, I agree with you... as each new sympton appeared, I just accepted that it was AD.....
I think it was said best, "Your husband is the way he is, no matter what label you put on it."
And Val, with all you face, thank you for taking the time to answer. Your situation is a very dificult painful one. Everyone gave you so much good imput , that I had nothing to add. This morning ( finally having a chance to read again) I re-read the entire thread. Although you mind appears to be made up , I urge you not to be lulled by a few short weeks of calm. Re-read your own words and review your stages..... Although painful, to start over alone may be your best chance to have happiness, and certainly peace......
I want to re-read all. I seem to be stuck on messages 51 -77. If I push the back button, I just go back to all messages. I entered it as a topic under search, and got the same thing. I don't know how to get back to the very beginning. Help anyone?
At the bottom of the answers in this thread, (and also at the very top of the page) there is a line that currently says 51 to 80 of 80 on the right and on the right says "< 1 2 >" Hit the 1 or the "<" and you will find yourself at the beginning of the thread.
If you hit "Back to Discussions" at the very bottom of the page it will take you to the newest page of discussions, but you can actually get to any page by using the numbers at the top and bottom of the pages at the right side of the Discussion list, and to any part of any thread by using the numbers to read all of the pages in any thread.
I'm hoping this is clear enough. It has been a long time since I did this kind of "technical assistance". If it isn't clear enough just ask and I'll try again with other words.
Thanks Starling, it worked! Meanwhile, I googled "all Alzheimer's symptoms" & aricept came up 1st. I had been frustrated reading about the 7 stages, because most didn't apply. But aricept had symptoms I could relate to, finally. Things like: believes something has happened when it hasn't. I also read one of the threads I could relate to, the woman whose husband took the cat to be put down, because he believed he & his wife had a discussion about that. Now that's scary. (She saved the cat.) I have a cat. That's similar to my husband believing I asked him to delete the photo albums on my computer. Anyhow, anyone who's interested, seems aricept has a different way of explaining the stages than does the Alz. Asso.
Anita, from what I've read, doctors are extremely hesitant to put any "label" on young patients who exhibit signs of dementia. We who come to the discussion forums know that there are many, many LOs out there with EOAD, but it still takes special expertise to make a diagnosis.
The Alzheimer Research Forum recommends that those who suspect their younger LOs may have AD, but are experiencing difficulty in getting a definitive diagnosis, seek a referral to a tertiary care cente -- an academic medical center with a specialty memory clinic, or a federally funded AD research center. There, you are most likely to receive an up-to-date diagnosis and care.They have a list of clinics and research centers.
Go to:
www.alzforum.org
In the menu bar at the left, highlighted in yellow, you'll see "Early-Onset Familial". (Note: this web site refers to EOAD as eFAD.) Click on "Diagnosis/Genetics" to see what they have to say.
(The really weird thing is that the very first patient who was diagnosed with AD by Dr Alzheimer all those years ago was very young... and for many years, AD was thought to be a disease in younger people, and distinct from "senile dementia.")
Val, the aricept list is interesting, but it's the same kind of list as the Alz Assn 10 early warning signs. These are NOT symptoms of early-stage AD. These are questions that can be asked to determine whether a LO is exhibiting signs of a dementia.
I think you are confusing early diagnosis of a disease with evaluating its severity (determining which stage it is, early or mid or late). They are two different things.
Many people think that confusion, forgetfulness, etc, are simply signs that a person is getting older. In early diagnosis, the question is: is your LO's behavior normal for an older person, or is it abnormal, that is, a possible symptom of brain disfunction? It is not intended to determine what type of disorder is causing the dementia, and it is not intended to determine which stage of the disorder has been reached.
Also, I think you are assuming that these symptoms are indicative of AD, and they're not -- they're actually indicative of dementia. As in the Alz Assn 10 warning signs, the Aricept list has questions that are more likely to be associated with later stages OF ALZHEIMER'S. However, they may be early symptoms of OTHER causes of dementia.
Dementia is a symptom, not a disease or disorder. There are many different diseases/disorders that can cause dementia (or dementia-like symptoms.) For example, if I recall correctly, FTD can cause horrible mood swings, aggression, etc, in its earliest stages, but does NOT cause memory loss until the later stages. In AD, the symptoms are usually reversed -- short-term memory loss is often the earliest detectable symptom, while major changes in personality typically emerge in the later stages.
Accordingly, the pharmaceutical companies and web sites on AD will list symptoms that are typically associated with ANY of the more common causes of dementia. They do not want you to rule out dementia just because they give you only the warning signs of AD itself. Your LO might have FTD, or VaD, or any of a host of other problems associated with brain disorders, and you would not realize it. So they give you the early warning signs for the most common causes of dementia.
PLEASE NOTE that the Alz Assn works with patients and caregivers for virtually ANY type of dementia -- it does not restrict itself to Alzheimer's. It just talks a lot about AD because AD is by far the most common cause of dementia. Aricept is prescribed for patients who suffer from many different causes of dementia, not just AD. So this web site is for dementia patients and caregivers, not just AD.
Also, AD develops very differently in different patients. For example, there is "visual variant AD," in which the earliest symptom is visual agnosia. Many of us, once we found out visual agnosia is a symptom of AD, realized that we had observed the symptom long before the diagnosis was made -- often long before memory problems became apparent. We just didn't know it indicated a possibility that AD was developing.
So, as with the Alz Assn list, your LO does not have to exhibit all of the signs in the aricept list -- only one is enough for you to be concerned.
In short, there is NO list of symptoms that can be used to "diagnose" AD, let alone early-stage AD.
The bottom line: NO ONE but a qualified doctor -- preferably a TEAM of qualified doctors -- can make a diagnosis. And it is essential that a diagnosis be made, as soon as possible, so that the LO receives the appropriate care. For example, the drugs that are most often recommended for treating AD are contraindicated for patients with FTD. Patients who have vascular dementia (or vascular dementia mixed with AD, which is often seen) are often prescribed AD drugs, but they ALSO need treatment to prevent additional strokes.
If one suspects dementia of any sort -- if your LO exhibits ANY ONE of the symptoms on the aricept list, or the Alz Assn list -- it is imperative that the LO be properly diagnosed by a doctor.
It is often very difficult to get the LO to cooperate, which is one of the many difficulties we have caring for ADLOs. But it is one of the most important things we can do.
The poor spouses who suspect EOAD have the additional problem that the doctors themselves often don't understand or know how to diagnose early-onset in young patients.