My DH has been diagnosed with Mild Cognitive Impairment. He would not allow me to go with him, so I did not get to speak with the doctor or see test results. She apparently did her best at painting an optimistic picture for him, telling him that only 12% of MCI diagnosis go on to Alzheimer's (she did not tell him that's per year – but I understand). I have very little doubt were DH is headed.
Within hours DH apparently decided that denial is the best approach. Here was his take: The only reason he did not pass the tests is that I had him so nervous that he dialed "411" instead of "911" when asked to call for medical help. If he hadn't missed that part, he's sure he would have passed. Therefore, there's nothing wrong with him and now he's just upset that this unfair test has caused him to have this MCI thing on his medical record when there is really nothing wrong with him. I guess you could say that he was having a hard time accepting the diagnosis.
That all changed later in the day when he got on the internet. I was out and he called very upset. He was now convinced that within a year he would be a blithering idiot. He was in tears, naturally. This is so heartbreaking! I was able to talk him through this, and to put things in perspective, for now at least.
It must be so very difficult for him, because he is unaware of his deficits. How can he come to terms when nothing is making sense to him? This is the part that just baffles me. I know it is part of the disease, but it is definitely perplexing. Here is an example. During DH’s few hours of full blown denial, we went out to run an errand. When we returned, and were half way to the door, DH took his keys from his pocket to unlock our front door. He stopped and turned to me, looked confused, stared at his keys in the palm of his hand as if he'd never seen them before, offered them to me and said, "I guess I must have your keys." I replied, "No." He then looked more confused and concluded, "Oh, well then I guess I have an old set of mine." I replied, "No, those are your keys - the ones you always carry." He started frantically patting down all his pockets looking for the keys he thought he should have. Who knows? Maybe he's looking for keys from the 1980s - sigh. But how can he not realize in that moment, that he is having one of those moments that my son and I see, but he doesn’t? Especially when we had just spent hours debating his diagnosis.
I hope we are doing the right thing regarding meds.
The neurologist prescribed Lexapro for anxiety. We have decided that DH will NOT take that. We would rather he be anxious than suicidal (a possible side effect that has devastated many families from what I see on the internet). He has always been a nervous type and outside of this diagnosis we would not be looking to pharmaceutically “fix” that. I have convinced him that some serious life style changes are in order, to eliminate all the stress that we possibly can. Work is going to be the hardest. He feels so responsible for the 300 people who rely on him for their livelihoods (he is 90% of his company’s sales), but I have made him realize that he is not going to live forever, regardless of this diagnosis, and that he is at the age (59) where he should be developing a plan to transition so that by the time he is 63 he can retire.
To treat the MCI, the neurologist gave him a choice between a pill (Razadyne) or a patch (he could not remember this medication name, but I assume it was Exelon). He told her he'd rather take the pill - Razadyne. We have decided he will NOT take this one either, after reading the Mayo Clinic website: " An Alzheimer's drug called galantamine (Razadyne) increases the risk of sudden death from heart attacks and strokes when used in people who have mild cognitive impairment." http://www.mayoclinic.com/health/mild-cognitive-impairment/DS00553/DSECTION=treatments-and-drugs
I know, we should consider the Exelon, but we are both so tired after yesterday’s emotions that I think we will have to consider that later.
So for now our plan is DH is going to take B12, exercise, and start eliminating stress wherever possible. I am sure part of him thinks the best way to accomplish the latter, is to get rid of me
Mary from everything I have read here and other sites all pills have some type of warning. Let's face it, dementias DO NOT have a cure and if a pill would help with some of the symptoms and make life esier for your DH and you why not at least try. I don't think any pill will act so fast that they would kill a person in a very short time. Of course this is just my opinion and everyone does what they feel is right for them. Good luck and God Bless.
Mary-dementia is a terminal disease. If you can slow the progression with meds you need to think long and hard about the possible side effects vs the benefits. Tough decision I know.
My husband was on Lexapro & Namenda for about 5 years, I thought it made a tremendous effect on his aggressiveness & anxiety....no side effects. I actually think this gave him more years of being, able to cope with the dementia. I know it made his & my life much easier. Razadyne ER was added a couple years later, with no side effects. I am in the opinion, that without these medications he would have been in an Assisted Living Facility 3 or 4 years ago. As Jean commented this is only my opinion. However, I did witness his grandmother & mother both endure dementia with no medications.
Kadee, I cannot imagine going through this without meds. I know it is bad for the patient but it has to be worse for the caregiver. My DH is progressing slowly thanks to the meds, who knows where he would be without them.
Everything I have read is that you absolutely can not slow the progression of this disease.
My understanding is that the aricept/exelon/etc drugs temporarily improve symptoms. And the downside I see is what I have read here and elsewhere. That once you start these, if you try to stop them the physicians will cry "No! If you do that your DH may experience a severe decline!" I have been dealing with my DH symptoms for 17 months, so thankfully I have had time to consider, and did not feel the need to rush out and blindly fill the RXs. A year from now, or maybe 6 months, or maybe 1 month, I may well be singing a different tune. I will definitely look into the Exelon, we are just pausing to adjust.
I think I have convinced my husband to get a copy of his neuropsych tests. The reports from the latest alzheimer's conference indicate that there are things you can look to, which will help determine if you have the MCI that progresses to AD - one of those being specific subtests in the neuropsych results. Others are spinal fluid, structural changes in brain on MRI, etc. It is a very interesting report, I will look for the link and post it for those interested. In my heart of hearts, I know where my DH is headed, but I think it is important to have the best objective analysis available. I would not even consider suggesting a spinal to my DH right now, but as emotions settle maybe we'll request one down the road. Maybe not.
I do want to make as informed a decision as possible. I have written elsewhere here that our family is very, very cautious regarding pharmaceuticals due to deadly and severe side effects we have experienced.
I really appreciate all your input. The more I hear from people who have traveled this road, the better my decisions will be. This site is a Godsend!
Mary, I agree with the others. My husband was originally diagnosed with amnestic MCI (the kind most likely to become Alzheimer's). He was immediately put on Aricept and on Namenda 3 months later. His diagnosis did not change to Alzheimer's for two years. I'm convinced that the drugs slowed down the development of symptoms. About a year after the MCI diagnosis he was put on Lexapro for his anxiety and depression. He needed it, because he was getting extremely angry at me, calling me names he would never have used before, and, on one occasion, he hit me with his fist. I know he was upset with the diagnosis and frustrated with the things he was finding himself unable to do, although he would not admit it. The Lexapro has made a huge difference in his mood. He has had no side effects of any kind. But even if he did have, I would still have used the medicine. The anger and possibility of violence along with his depression and frustration made it necessary in my opinion. Otherwise he would have had to be placed, and they would have used the drugs there anyway. Truthfully, I would risk any rare side effects to keep him at home right now.
Kadee, my DH has a heart condition. He had a major silent heart attack that destroyed 1/3 of his heart. He has heart failure and bad lungs. The neuro put him on Razadyne 3 years ago and added Namenda 2 years ago and he is still taking both with no side effects. At first they worked very well and kept him stable for a couple of years. I don't think they are working now, because he is going down hill, but the neuro said to keep him on the drugs. From your comments it sounds like you might not be realizing the entire picture of a person with dementia problems....the progression only goes one way....down. My DH is only 63 so he was about your husband's age when I first started noticing changes. I have come a long way in understanding this condition and have a totally different look on my life as well as his, then I did 3 years ago. Sad to say, but I just want this over with since it can only get worse.
" An Alzheimer's drug called galantamine (Razadyne) increases the risk of sudden death from heart attacks and strokes when used in people who have mild cognitive impairment."
How much is the increase in risk? Because of possible legal action, the pharmaceutical companies are required to list all possible side effects, regardless of how common or rare they are. The increased risk of death from heart attacks is quite small in the overall picture. If you read all the possible complications of aspirin, Tylenol, or ibuprofen you would be reluctant to ever take one. My mother died, at age 100, from a complication of ibuprofen (GI Bleeding), but taking it over the years kept her comfortable. In my opinion is was worth the risk. I agree with Janet ("Truthfully, I would risk any rare side effects to keep him at home right now."). My wife took Razadyne, then changed to Exelon Patch, plus Namenda. I can't be sure they helped, but it was all that we could do.
FYI - For those who are not aware, Marsh is a physician. I value his advice and agree with the others. Sid was on a fast downward spiral. Aricept and Namenda definitely slowed the progression. Risperdal calmed the rages. Celexa stopped the crying. We're going for quality of life. AD is terminal - nothing is going to stop it, but these medications improve quality of life and do slow the progression. Just my opinion from my experience with Sid.
I agree with the above also. DH was on Aricept from the beginning (7 years ago), then Namenda. His decline has been very, very slow. Now he takes Sertraline for anxiety/depression and it has worked wonders. Switched from Aricept to Exelon Patch a few weeks ago, but he had too many side effects, so back on Aricept. It took a few days to get him back on track, but he is now where he was before going off it. I have no idea if it helps or not - but as long as it isn't hurting, it's all worth the risk. Life is a risk and sometimes you just have to go for it!
Mine is on Exelon and Namenda and I have to say I do think it helps him. He seems to be stable and I seem to have fewer "shocks" these days. I know at some point this will change but for now, he is cheerful. He is kind of like a sloth...but his moods are good and he is easy enough to please. I just wish he could help with the tasks he used to. Somedays I get so down and tired I just don't have the energy to take care of things needing done though I do care about how the house looks, yard etc..And with no family near at all, and his friends seemingly around less...in addition to everything else being the entertainer is one job too many.
With any drug it is risk versus benefit. In the case of the dementia drugs, and you need both of them, there is a lot of benefit the earlier one starts them, and just a small amount of risk for most patients. Generally if there are bad side effects you know it very early on.
All dementias are terminal. Would you fail to give a terminal cancer patient pain killers because of the risk of an earlier death? Twenty years ago people were denying pain killers to terminal cancer patients for just that reason.
All of the drugs given to dementia patients that have warnings on them are EXACTLY like the debate on pain killers for cancer patients was 20 years ago.
In addition, the dementia drugs slow down symptoms. They don't add a single day to the life span of the patient as far as anyone can tell. For most patients they also don't take any days away either. They just give you more mild and moderate days within that life span and fewer severe and profound days. More days where they can walk and talk and feed themselves. Fewer days where they are in a fetal position in bed unable to make contact with the outside world.
I'm saying the harsh stuff because you need to know what you are actually choosing if you choose not to medicate someone with mild dementia.
Hi, Mary. Bluedaze asked me to respond to this thread.
The doctor was painting an accurate picture, not an optimistic one.
Half of MCI patients gradually recover / revert to normal. Roughly one-fifth simply hold steady indefinitely with mild impairment. Only one-third ever progress to dementia.
That's total, *not* per year ... so the odds are good for your husband.
There is a recent paper that reports the results of a "meta-analysis" (i.e., it combined the results from a bunch of different studies) on the rate of progression. It concluded that the data in the individual studies was not always interpreted correctly. The senior author sent me a .pdf of the full paper, which I'd be happy to email to you, if you'd like. For a synopsis, see:
There are a number of non-drug interventions you can try which may prevent or delay progression to AD, including:
(1) Sticking as closely as you can to a Mediterranean diet (with wine and nuts), which has been shown to help prevent/delay the onset of AD, and also slow its progression. See:
Basically, it involves: - High intake of vegetables, legumes, fruits, and cereals - High intake of unsaturated fatty acids (mostly in the form of olive oil) - Low intake of saturated fatty acids - Moderately high intake of fish - Low-to-moderate intake of dairy products (mostly cheese or yogurt) - Low intake of meat and poultry - A regular but moderate amount of ethanol, primarily in the form of wine and generally during meal
To that, I would add eating a quarter cup of nuts every day -- quite a few studies have found they're very good for you.
Also, olive oil is very good for salad dressings etc, but not so much so for cooking especially at higher temps. Use canola oil for that, or a mix of the two. (I've seen plenty of products that contain olive and canola oils.)
Avoid hydrogenated fats and trans fats like the plague.
(2) Lots of physical exercise ... there is quite a bit of evidence it can help prevent/delay onset.
(3) Lots of exercise for the brain -- activities that involve learning something new. I've seen some reports that learning new things coupled with using a computer can be particularly helpful.
(4) Socialization, doing things with friends and family.
(5) Plenty of rest.
(6) NO SMOKING!!! and avoid air pollution as much as possible.
(7) Learn and practice stress reduction techniques. (Ask his doctor for a referral to integrative medicine.) Many of us can confirm that stress exacerbates cognitive dysfunction (even those of us just suffering from caregiver dementia); and researchers are beginning to think that prolonged, severe stress can actually trigger AD. There is one researcher in the university here who is studying its impact on the progression of MCI to full-blown dementia.
Re meds, it drives me absolutely batty when a website makes a flat statement about adverse effects without citing the original study. (I'm a big fan of reading the original studies, to see what was done, what the real findings were, and whether the study was of high quality.) I have finally tracked them down. Two clinical trials found an increased rate of death for galantamine vs placebo, (out of a total of 2048 subjects, 13 in the galantamine groups died vs only 1 in the placebo groups) but only one of the studies actually reported what the deaths were due to. In that study, causes of death in the galantamine group were suicide (2), myocardial infarction (2), bronchial carcinoma and sudden death (1), and cerebrovascular disorder and syncope (1), whereas the one subject in the placebo group died of arrhythmia and cardiac arrest. The deaths are quite a mixed bag, yet aside from the carcinoma, consistent with known side effects of the drug in AD patients.
In addition to the potential for serious adverse side effects, none of the cholinesterase inhibitors has been found to be beneficial in clinical trials for MCI.
In any event, I had originally expected to encourage you to try the meds, but after reading a couple of detailed reviews of the clinical trial data, I think you'd be wise not to -- unless and until your husband does actually progress to AD. The story is quite different for AD patients.
This forum hates me ... never will let me enter all of a post in one box. Geez.
Now, I would note that the results of these MCI studies actually make sense, when you think about it. If two-thirds of MCI patients are actually NOT developing Alzheimer's, then the use of cholinesterase inhibitors could be harmful rather than helpful. And with two-thirds of the test subjects never in line to progress to AD to begin with, it would be difficult to detect a benefit in the remaining one-third, especially over the relatively short duration of the clinical trials.
One thing you might want to consider trying is Axona (or MCT oil). There is no data with MCI patients of which I am aware. However, the "active ingredient", caprylic triglyceride, has "generally recognized as safe (GRAS)" status, and MCT oil (which is 2/3 caprylic triglyceride and 1/3 capric triglyceride) is pretty widely used by athletes and has been studied extensively for use in dieting. If you decide to try it, start off with a low dose, maybe a quarter packet, and work your way up gradually. Give it immediately after a full meal, too. Otherwise, your husband may have very unpleasant gastrointestinal side effects until his body has adjusted.
You might also want to add omega-3's to your husband's supplements.
Finally, with regard to your husband's "denial" and not noticing a specific problem which is very clear and upsetting to you, that's a very common symptom, called "anosognosia." And his rationale for his behavior is "confabulation". See:
JudithKB, I think by your comment to (Kadee) me. Which was " From your comments it sounds like you might not be realizing the entire picture of a person with dementia problems....the progression only goes one way....down" Were meant for Mary22033. Believe me, unfortunately, I know the whole picture of a person with dementia. As I mentioned I experienced with my husband's grandmother, mother & now first hand with him. He is going into stage 7 now, he had to be placed into ALF in March, due to his aggressiveness. Again, I firmly believe the medications he was prescribed early on, are the only reason a he was able to care for at home until recently.
mary22033 - my hb is on galantamine. In 11/08 he was diagnosed with aMCI. Actually it would have been made earlier except the VA doctors were slow communicating with each other. I too was concerned about the report of increase risk of heart attack after much research went with it. Within 6 months my hb had progressed from aMCI to EOAD. Last January I convince the doctor to do what was needed to get the VA to pay for Namenda since I had read of the good results when the two are combined. She upped his diagnosis to moderate stage so the VA would pay for it, but it didn't work out. The side effects of tiredness, exhaustion and vision changes were something we did not want to deal with. Quality was better than quantity. The doctor just took him off prozac to see if he really needed it. The first neuro we went to automatically put him on it and she doesn't like it for dementia patients anyway.
He is only on galantamine 16 mg. My understanding is also that it does not slow or stop the disease, it only slows down or mask the symptoms. That is why when they com off their symptoms usually progress very fast to where they would be if not on. So as others have said, IF the drug works for your spouse (which only 50% or less it helps) then it can be responsible for allowing them a better quality of life longer.
My FIL was diagnosed with AD around 1986. He never took any prescription drugs as my MIL said no. She gave him ginko, St John's Wort, vitamins especially B's, and they had their tea 4 times a day. When my MIL died in 2001 he was still walking, continent, could do his daily activities like dressing, shower himself when told to, shave, etc, but he was a runner. He only knew who we were occasionally but did have a moment of recognition at my MIL's funeral. We took him up to their campground after the funeral and it was a nightmare. We were not ready or prepared for his running (actually had no idea cause we had not seen him in a couple years). It was a sleepless night. Due to this and nothing keeping him in the house he was placed in the VA Alzheimer's unit. There they put him on Namenda. When we saw him again 5 years later he was incontinent, knew no one, did not speak - just wandered the hallways of the unit with a big smile on his face. (it was 5 years cause we lived 3500 miles away). Now, did not taking any drugs those first 15 years cause it to progress slowly? Did putting him on Namenda do any good? We will never know but I do believe that my MIL was on to something except her devotion to keeping him busy did literally kill her.
Is the galantamine helping him or has to drop the last year in cognition the way he would have gone anyway? There is a part of me that wants to take him off it and see. But, as long as we have VA medical, at $8 a month he will stay on it. We could never afford it if we had to pay what most people have to.
You have a hard decision and I like that you are open to changing if it is warranted. I pray that he is one of those who never progress beyond MCI or aMCI. Maybe decreased the work stress will help or have it go away. You won't know until you try.
I definitely would order a copy of the neuro-testing and the doctor visit. they will have more info than what the doctor just said. I have copies of both the neuropsych testing my hb had done to compare and every doctor report. I learn more from them than I did from the doctor's mouth. It also gives you questions to ask next visit.
Can someone explain to me how they dx MCI versus Alzheimers??? How many incorrect dx of Alzheimers do you suppose there are and if giving these drugs is not good....wow. Maybe I am just having a bad day but I don't understand how the two conditions differ.
What a lot of information here, thanks, Sunshyne. My two bits: I fought for a diagnosis in order to be able to get the meds for my husband. He was 65. There was some doubt, so it took a long time. He has now been on Exelon for about 20 months, and I found from the beginning that it did not delay his decline (as far as I could tell, who knows?) but clearly helped to keep him calm, contented and cooperative. After about a year his anger and agitation were getting bad so Risperdal was added (at my request) and it has helped tremendously. Recently I wanted to cut down on meds (He was refusing to swallow all those pills) and the pcp agreed that the Exelon probably was no longer helping. However, as I gradually cut it out, he gradually got more agitated and angry again. So I resumed and he is again reasonably contented. So I think the Exelon is still helping his comfort level (and mine.)
Thanks, Sunshyne. Good to see you posting here. I know you recommend all the non-med possibilities, which is great, but I thought I read something QUITE recently that said that "studies had shown" that they really didn't do a thing for ALZ progression ONCE IT HAS STARTED although all those things may help PREVENT ITS DEVELOPING.
Is this what you've found too? I can't find the article I was looking for. It's funny, I can see it in my head! but I can't find it.
Thanks for the link Sunshyne...Still not sure I understand how they know the difference....but, that isn't real important to me anyway. Thanks again. Jeanette....I felt the medications were not doing my husband any good too and wanted to take him off the drugs by the neuro said no.
Mary22033--I'll add my two cents. Perhaps you should consider asking the doctor for something other than Lexapro for your husband's anxiety, since you don't want him to take that. Because he is still working at a stressful job, now has this diagnosis to deal with and is having difficulty with everyday things (as you described the keys), do you think he will be able to reduce his stress level without any medication? I would think that is a tall order for anyone--I doubt I could do it!
My husband was also diagnosed with amnestic MCI at age 60, and was prescribed Aricept and Citalopram (generic for Celexa--antidepressant) at that time. Namenda was added later on--no bad side effects, and the disease progression has been slow. No way to know if that's due to the meds. However, his Dad went through this years ago when he was diagnosed in his 40's--and I will tell you, my husband has been an angel with this compared to his Dad. I am thinking the meds must have something to do with it.
Finally, some doctors feel that the addition of the antidepressant medication for AD patients produces a better result. In other words, it's not given because they are clinically depressed, but it helps the brain that is challenged by dementia. I'm sorry if this isn't clear, maybe Marsh or someone else can clarify.
Some antidepressants balance a serotonin imbalance and improve functioning. My own doc thinks my extreme fatigue may be due to a serotonin imbalance and might be improved with use of a Wellbutrin type drug. We're still exploring.
Again, all our stories prove that if you have seen one AD patient you have seen one.
My conclusion after dh was diagnosed with aMCI then dementia of the Alzheimer's type is it is a stage that they do not know if it will develop into AD. Here is a simple explanation: Mild Cognitive Impairment (MCI) is a condition that means there is clear evidence of cognitive problems, most often involving short term memory. However, normal day to day functioning such as the ability to manage household, medication, and financial matters is typically preserved or shows only minor changes. Most people with MCI recognize their memory is not as good as it was at one time. As a result, they often express concern they may have Alzheimer’s Disease (AD) and want to take preventive steps to preserve their memory.
The diagnosis of “mild cognitive impairment” means that an individual meets the following criteria:
* Short term memory problems and/or problems involving other cognitive areas such as language and reasoning * Abnormal cognitive loss for age and education * Normal function in all other areas of daily living
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What is the difference between MCI and AD?
People with AD generally have:
* More severe problems with memory and other cognitive abilities * Decline in daily functioning at home or work
This was from an eldercare site and I like it cause with MCI cognitive function is only affected where dementia goes further: What is Dementia?
Today, we need to take a step back and review the definition of dementia to understand where mild cognitive impairment fits in. Dementia is thought to be a syndrome or group of symptoms that show impairments in areas such as cognitive skills (memory, speech, thinking), functional abilities (daily activities such as dressing, eating, walking) and in mood and behavior. In the simplest terms, dementia is caused by brain cells in key areas dying off. Some researchers actually feel that there are over 70 different types of dementia. The reason we hear Alzheimer's disease and the term dementia often used interchangeably is because Alzheimer's disease is the most common form of dementia.
Some of the common symptoms of dementia are:
* Language problems * Judgment and abstract thinking issues * Personality or behavior changes * Memory loss or impairment * Disorientation to time or place
Dementia is a progressive disease that interferes with daily activities and quality of life. Often the disruption to one area of an individual's life is what brings the disease to the forefront. At this time, there is no cure but medications are on the market that claims to stop some of the further development of the disease. Research continues but there is much that is unknown about dementia.
What Is Mild Cognitive Impairment?
Mild cognitive impairment is not dementia. It is defined as a noted problem with cognition or brain processing that is unusual for a person's age or education. If you recall from the dementia definition, there were issues seen in a number of areas of brain functioning--with MCI, it is only cognitive functioning that is impaired. The other major difference between MCI and dementia is that any of the symptoms that are seen in mild cognitive impairment do not cause any interference with the person's daily level of activities. We know that once dementia symptoms have been seen, there are quality of life disruptions already in place.
MCI matches dementia in the fact that the cause of the syndrome is also unknown yet the medical community feels that it could be triggered by stress or illness. Some physicians and researchers feel that MCI can be viewed as a defining line between regular aging and dementia. In fact, some studies point to the fact that approximately 10-15 percent of all MCI cases seem to develop into some form of dementia.
Knowing the relationship that could link mild cognitive impairment with dementia makes this an important topic to follow in the future. If you suspect that you or a loved one has some cognitive concerns that are more than just the usual forgetfulness we all experience, take the time to have it checked out.
This may be a case where the internet is not a good thing. There is a lot of conflicting information. Mayo clinic clearly states that 50% of MCI patients develop AD within 5 years (hence my 10% per year - plus I have seen the "per year" in clinical studies). In the end it is what it is. My husband has exhibited all the signs of AD except for one. To the best of my knowledge he has never lost orientation as to place and time. But he has definitley exhibited the behavioral chages, the reasoning and judgment deficits, language problems, memory loss, and more. His symptoms have steadily progressed downward over the last 17 months. I am fairly certain he is in the AD path (not being fatalistic, just realistic). If the neurologist had interviewed me the diagnosis may have been different - maybe not. In our case, I think Mild Cognitive Impairment means - he hasn't lost his job yet.
Thank you all so much for your input! We will focus on life style changes initially, and will definitely consider the Exelon - especially if the life style changes don't improve the mood. Sunshyne - thanks for all the tips! Some we have already done, others I will plan to do after reading your suggestions.
Okay, then, Mary. You need to focus on the job stuff soon. Can he retire? Some people can at 59.5. What would happen if he were fired? A lot of us have spouses who were. The life style changes seem more to be preventative than anything else so don't count on them to reverse or even hold steady his behaviors. You may need to start thinking about getting Social Security Disability. Just think about it, explore it at this point, nothing more. But you seem to be someone who likes to be prepared. He may well be diagnosed with EOAD within the year. It isn't the end of the world though sometimes it will seem to be. Many people here have EOAD spouses.
mary - I agree with you but then I am tainted in that my hb progressed to the AD. I believe that they may even start with an MCI diagnosis to begin with even if they believe it is AD. They could be waiting for that final symptom to push it over the fence!!
If he can relieve stress it may could possibly have a huge effect on him. One way to find out is for him to take vacation and do not let him work even at home during that time. As for if you use any meds, you have to choose and maybe he can help at this time. This is also the time to talk about the future of using meds vs not. There is so much to consider even if by some miracle he stayed at MCI for a long time. But do get the reports from the doctor and neuropsyco report - it can give you a wealth of information. Consider the lexapro or some other anti-depressant. That might enable him to handle the stress of work better. You might want to consider some natural remedies like SamE or Serenity Formula. When I told my hb's neurologist I was taking it and it helped she wanted to know the ingredients - which I couldn't remember.
Just remember the verdict is still out whether to take the AD drugs or not since there are so few they really help with. I think because AD has more than one cause, they only work on certain ones. And remember, the only ones that are guaranteed to benefit from patients taking them are the drug companies. Keep us informed on how it goes.
You would have to bring that up, Briegull... I had nearly as much trouble finding the blooming report as you.
There was a recent review by a panel of experts of the studies done to date on the impact of lifestyle factors (such as diet and exercise) which concluded that:
(1) No study done to date has produced absolute proof that something you do -- diet, physical exercise, mental exercise, socialization -- will always help prevent someone from developing AD.
(2) No study done to date has produced absolute proof that any of these lifestyle factors will NOT help stave off AD.
(3) More studies (and studies with better designs) need to be done on all these issues.
The studies that were reviewed were held to very rigorous scientific standards associated with cause and effect. Everyone promptly went into a meltdown, because the reason for the review and the ways in which the results were interpreted were totally misunderstood by the general public. The meltdown was fueled by sensationalistic articles such as one from MSNBC. http://www.msnbc.msn.com/id/36834397
AD is extremely complex, and there are many possible "risk factors" over which we have no control or sometimes even knowledge of, such as exposure to toxic chemicals, infectious pathogens, the development of other illnesses such as diabetes and cardiovascular problems, and brain injuries -- some of which may have happened in utero! -- to name a few. Very few of the studies conducted to date on prevention have attempted to control for even one of these risk factors, let alone all of them. That's undoubtedly one reason why the level of evidence hasn't been stronger.
And an individual's susceptibility to the various risk factors depends on his/her genetic makeup, too.
So some of us may practice a healthy lifestyle, and still develop AD. Maybe that lifestyle helped delay onset -- how do we know? And that does not mean that others of us would not stave off AD if we did practice a healthy lifestyle.
Read the full report. It's interesting. And it may help you understand the complexities involved in trying to study such issues.
http://www.ahrq.gov/clinic/tp/alzcogtp.htm
On the other hand, it's also pretty darned long ... 727 pages altogether. <grin>
There was a much more objective and unbiased article in Alzheimers Weekly:
NIH also offers a free booklet recommending ways to prevent Alzheimer's, which says basically the same thing, in more detail than Alzheimers Weekly and considerably less detail than the panel's review:
Charlotte--I agree with you that some doctors may give the MCI diagnosis at first to let the patient and family come to terms with something lesser than full AD. They may think it's more humane to label it with a condition that allows for some small possibility of hope.
Here is the link to the site containing the proposed recommendations to update diagnostic criteria for Alzheimer’s, Mild Cognitive Impairment, and Pre-clinical Alzheimer’s : http://www.alz.org/research/diagnostic_criteria/
The interesting info I found in the MCI draft:
“These criteria incorporate the concept that, prior to the time an individual becomes demented, it may be possible to identify those individuals with AD pathology as the primary cause of their progressive cognitive dysfunction. The term "MCI due to AD‟ has been used throughout this document to reflect that underlying assumption.”
“Research studies have shown that there are a variety of episodic memory tests that are useful for identifying those MCI patients who have a high likelihood of progressing to AD dementia within a few years. These tests share the characteristic that they assess both immediate and delayed recall, so that it is possible to determine retention over a delay. Many, though not all, of the tests that have proven useful in this regard are word list learning tests with multiple trials. Such tests reveal the rate of learning over time, as well as the maximum amount acquired over the course of the learning trials. They are also useful for demonstrating that the patient is, in fact, paying attention to the task on immediate recall, which then can be used as a baseline to assess the relative amount of material retained on delayed recall. Examples of such tests include (but are not limited to): the Free and Cued and Selective Reminding Test, the Rey Auditory Verbal Learning Test, and the California Verbal Learning Test. Other episodic memory measures include: delayed recall of a paragraph such as the Logical Memory I and II of the Wechsler Memory Scale Revised (or other versions) and immediate and delayed recall of non-verbal materials, such as the Visual Reproduction subtests of the Wechsler Memory Scale-Revised I and II.
Since other cognitive domains can be impaired among MCI patients, it is important to examine domains in addition to memory. These include: executive functions (e.g., set-shifting, reasoning, problem-solving, planning), language (e.g., naming, fluency, expressive speech and comprehension), visuospatial skills, and attentional control (e.g., simple and divided attention). Many validated clinical neuropsychological measures are available to assess these cognitive domains, including (but not limited to): the Trail Making Test (executive function), the Boston Naming Test, letter and category fluency (language), figure copying (spatial skills) and digit span forward (attention).”
This is why I’d REALLY like to see my husband’s neuropsych test results.
The document goes on to recommend diagnostic criteria of MCI due to AD using biomarkers from spinal fluid, coupled with structural MRI (shrinking hippocampus, etc) and/or PET scan. Emphasis seems to be on the spinal fluid biomarkers as most reliable.
It is a very interesting read: http://www.alz.org/research/diagnostic_criteria/mci_reccomendations.pdf
Hard to add anything new to what others have already said. Six months after my wife was diagnosed with AD (she had been diagnosed with severe cognitive impairment 6 months before the AD diagnosis) she started on Lexapro and it made a huge positive difference. No negative side effects, mary22033. We're also very cognizant of side effects since my wife has coronary artery disease and is already taking the maximum daily doasge of nitroglycerine as well as other daily heart meds. The Lexapro has rid her of many of the depression/anxiety feelings she was experiencing on a daily basis.
The basic problem with the "updated diagnostic criteria" is that it is a "wish list". These are things that the panel hopes may eventually be possible.
None of the tests or definitions have yet been validated.
Basically, the diagnostic tests discussed in the criteria are in pre-clinical stage or Phase I or II of clinical trials. Researchers are hopeful, data appear promising. However, everything is preliminary. It's just as difficult to develop diagnostic tests for dementia as it is to develop drugs ... and we all know how promising drugs can look in Phase I or II, and then fail miserably later down the pike.
The "updated" criteria were presented for the first time at ICAD, and then published. (And thanks for the link, Mary.) Now there will be a period for the medical community to comment, and then the criteria will be revised accordingly. After that ... studies and clinical trials. Lots and lots and lots of studies and clinical trials, many of them lasting for years.
For example, the "new" PET scan based on Pittsburgh compound B is already in clinical trials. This dye is the one that is the furthest along the development process of all of the amyloid plaque dyes. One of the trials that will test its accuracy and reliability is scheduled to last until April 2018: http://clinicaltrial.gov/ct2/show/NCT00950430
The "criteria" development, publication, and review/comment are essentially designed to help the Government and private industry prioritize where to put their research dollars.
Everything from the ICAD conference is still on the home page - www.thealzheimerspouse.com - under Breaking News, including all of the links.
I did not list each link separately, as I figured everyone could click on the main link and read which topics interested them.
I no longer pay much, if any, attention to updated criteria, breaking important news from clinical trials, new breakthroughs for Alzheimer's Disease treatments and cures. The bottom line is that there is nothing new that is going to help or cure our spouses. Period. Directly from the mouth of one of the leading experts and researchers on Alzheimer's Disease. He and his colleagues present at seminars and conferences all over the world, updating everyone on the latest research, thinking behind the research, hopes and wishes for the future, but in a moment of truthfulness, he basically told Sid there is nothing else out there NOW except Aricept and Namenda, basically - "What you see is what you get."
I continue to put up the stories and information under the Breaking News section on my home page, updating every weekday, but I honestly don't pay a lot of attention to it anymore.
I gave up paying attention to it also a while ago. It just is what it is. It appears they are all going in so many different directions - but I guess that's how research and development is - you just throw it all against the wall and hope something sticks.
All I know is that my DH is actually much better this year than last (I know this won't be forever, I just pray it works as long as possible) while on Namenda and Seroquel. His moods aren't as dark as they were last year. He can enjoy some things he didn't before, such as going on vacation this year and on one of our annual weekend trips just last week (last year he wouldn't go). He doesn't yell at the neighbors anymore. He has some paranoia but not the same kind as last year. He has no hallucinations. I feel as though we have some of our life back. Of course, it isn't the same, but I don't expect it to be.
I can't tell you how grateful I am for this, and if it wasn't for the people on this website who encouraged me to use it, I'm not sure I would have put him on the Seroquel, because I was so worried about the side effects. So far, he has had none. I, like Joan and Vickie, don't pay attention to all the stuff out there about what we can do for Alzheimer's and other dementias. Just following our doctor's suggestions (and the people here, whose opinions are very important to me) is all I care about as far as what side effects there could be. Our quality of life is much more important to me.
Unfortunately, I think Mary22033 is in the same denial stage we were all in when we found out what was happening. It boils down to which is better; a shorter happier life or a longer more miserable one. They can die at stage 5-6 with a stroke or heart attack from the drugs or at stage 7 when the caregiver is worn out, depressed, in ill health and financially ruined. Give them the drugs and pray for the best.
My husband developed pneumonia and went from stage 6 to stage 7 in three days and now I wonder why I allowed them to treat the pneumonia; I really know it was because I didn't want to feel guilty about causing his death and I know it wouldn't have been me, it would have been the disease. All I did was prolong the misery and I feel guilty anyway.
Del, I agree and would emphasize your first line "the denial stage WE WERE ALL IN when we found out what was happening." Here we are, rational, educated adults, suddenly plunged into a pool the depth of which we have no idea. No knowledge of the beasties lurking below the surface. We start reading and reading, read all these things about trials, and how everyone's going to have AZ if they wait long enough.. and we and our spouse already DO the things Sunshine suggested.. and the doctor gets hung up on what MIGHT be the matter but meanwhile our spouse is behaving perfectly normally when he sees the next-door neighbor for five minutes.. or when cousin Sue comes to visit..
And it just blows our mind that we might have to rethink our discomfort with dangerous meds, or think they'd help our spouse, and that THERE IS NO CURE!! NOTHING BEGINNING TO START TO RESEMBLE A CURE, or even much of a slowdown in symptoms.
So most of us here are jaded old survivors, exhausted and cynical. Pass the pills. Better living through chemistry!!
Since Mary22033 is new and doesn't know us well, I'm sure it would be helpful for her if you would all explain which of your spouses were diagnosed with MCI, and which were diagnosed with AD or another dementia.
Choosing to give our spouses meds for an AD, VaD, FTD, or LBD diagnosis is quite different from choosing to give them for a MCI diagnosis.
I think my DH jumps from day to day between MCI and dementia. Depends on the day, the activities for the day, THE MOON, whatever. He still showers, shaves, brushes teeth, fixes his breakfast and lunch, uses microwave, TV (he does mess the remote up sometimes); vacuums, trims hedges and on and on. However, he cannot manage any finances, sometimes can take a phone call and tell me about, but mostly, not; asks me the same question 10 times in 15 minutes; isn't able to recall a friends name sometimes - It just jumps back and forth! It's like I'm living with two different men!
Meds or no Meds? I didn't know there was a choice when we were first told about his condition AD. So he has always been on the meds. They aren't helping as much now as they did in the beginning (3 years ago) but doctor says he should stay on them. About a month ago I thought my DH might have to have open heart surgery and I was beside myself with worry and didn't know if I would permit it or not. Fortunately, I never had to make that decision because the doctor said no he didn't want to do it at this time and would retest my husband in six months. I didn't question the doctor about why not...I didn't want to know. I had already made the decision that I would not permit such surgery.
This is the strangest condition. I swear if I didn't know that my DH has AD this week I would have thought he was normal. This is one of the best weeks in months. Of course he doesn't drive, he doesn't understand TV programs even though he pretends he does, he can't hammer a nail in the wall unless I direct him where to nail it, what hammer to use and how hard to hit it. He is fully aware of his condition and I think he has come to terms with it and that could be why he was so good this week. I keep telling him,I could go long before he does and we just need to do one day at a time and live each one the best we can.
Vickie and JudithKB, You both could be talking about my DH. Some days it is like nothing is wrong. But then, he can not write out a check, sometimes can not tell time, or asks me the same question over and over again. The only meds for AD is Namenda right now. We go back in 6 mos and may add more. I do see my DH as doing better now than a few months ago, but I think that is the lack of stress from work. I like the idea of one day at a time and live each one the best we can.
My DH was diagnosed with AD, not MCI, and the medications (Aricept, Namenda, Cymbalta and Axona) have really helped. He's had some ups and downs but has basically been about the same for the last 2 and 1/2 years since being diagnosed. However, if he had been diagnosed with only MCI, I don't think I would have given him the drugs. The healthy lifestyle Sunshyne outlined would have been my choice.
Cerebrospinal Fluid Analysis Should Be Considered in Patients with Cognitive Problems http://www.sage-hindawi.com/journals/ijad/2010/163065.html
It seems that the spinal fluid analysis is VERY helpful in identifying patients with MCI who will progress to AD: "Together, CSF biomarkers of amyloid pathology (A1-42), tangle pathology (P-tau) and cortical axonal degeneration (T-tau) identify AD with dementia and prodromal AD in patients with MCI with 75–95% sensitivity and specificity." Thise numbers are pretty impressive.
The question is - would my DH do anything differently if he knew he were on the AD path? And would that information do more harm than good? If he were to become deeply depressed, i.e. "give up" it would be better he didn't know.
Right now he is obsessed with his diagnosis - very anxious. Yet when I discuss ways to eliminate stress, he is VERY reluctant to give things up. He has an I-phone. He gets many hundred of emails each day. They ALL go to his desktop AND to his I-phone. So this wonderful piece of technology has doubled his e-mail processing workload, rather than helping him become more productive. It took me a full day to get him to understand he needed to stop sending the e-mails to his phone and only turn that feature on if he was traveling. That the world would not come to an end if he takes a lunch break that includes the "break." Finally, after much pushing, he claims he turned it off. I don't know if I believe him.....
Mary, the quality of research and of review publications varies from excellent to downright putrid. Don't swallow anything whole -- check into the details. That's a very obscure "journal" -- just started up, and it's on-line, open-access, it's not even a publication. Before you go believing anything it says, check the references it cites -- preferably the full papers. Abstracts are all too easy to misinterpret, and do not provide nearly enough information on experimental design to evaluate quality.
For example, references cited for those figures on sensitivity and specificity:
Pay close attention to how the analyses were done. These are not commercial tests run by clinical labs -- these are research analyses, done using research-only reagents, performed by research laboratories.
Look at the comments about inter-laboratory variability.
These tests are just at the very beginning of development. They have not been validated in clinical trials. In fact, as far as I know, there isn't a commercial diagnostic development company working on them yet. Look at the author affiliations. Not a clinical lab diagnostics company in the bunch.
(Pity the full paper isn't readily available.) "The CSF AD profile was *more common* in patients with SCI (31 of 60 [52%]), naMCI (25 of 37 [68%]), and aMCI (56 of 71 [79%]) than in healthy controls (28 of 89 [31%])."
How, exactly, would one go about interpreting the results of the CSF analysis from a single person? If the person has the "AD profile", does he have aMCI, naMCI, SCI ... or is he in the 31% of healthy people who have that profile?
Look at that revised diagnostic criteria report for MCI for which you provided a link. This was developed by a panel of world-class experts. Read what it says about biomarkers (Section III). Pay particular attention to Section III D Limitations of Current State of Knowledge Regarding Biomarkers for AD.
Thanks, Sunshine, for the information on reading research papers. I know how to read ones related to education and the things to look for. But the scientific/medical papers are new to me.