Hi, I am new and have written 2 long posts to introduce myself and my situation and cant find my post anywhere. Help would be apprreciated. Thanks Dia (Diana)
Diana, Welsome to the spouses website! I am fairly new here as well...but hang on and some of the others will be able to help. You have come to the right place for support. It is an awesome site with caring people. We are at all stages in ALZ....some spouses are early stage ...all the way to very late stage.
Welcome Diana, As you'll see, we do tend to go off topic a lot and sometimes it is hard to remember what the topic was, and many newcomers sneak in all over the site.Welcome.
We've had so many new folks join lately. I like to think it's just more people finding this place to chat with others in the same fix.
thanks all for responding. My DH was dx 3 years ago at 56. He has gone downhill fast. needs 24 hr help but is very healthy physically. We live in southwest Va. anyone else out there nearby us? look forward to getting to know you all. Diana
Welcome to my website. I won't be on much for the next few days, as my son and daughter-in-law from California have come for a long anticipated visit.
Please be sure to check out the home page of the website - www.thealzheimerspouse.com - look at all of the resources on the left side, including the previous blogs. You will relate to many, I am sure. Since your husband was diagnosed under age 65, he falls into the EOAD (Early Onset) category. There is a section on EOAD on the left also.
There are 3 discussions for new members - Welcome New Members; What are the age groups; and Where are you from? You may want to introduce yourself in one or all of those.
Diana, Welcome, Hope you find this site as useful as I have. It sure helps to know there are others dealing with the same things we are! And most of the time you will have an issue arise, come here for info and guess what? The answer and support is just waiting for you. Rk
Joan, enjoy your family time, don't worry about us, we will try and be good........................ Rk
Welcome Diana-I am glad you found us, but sorry that you find yourself here. This is a wonderful group of people though, and you should find that we all speak the same language that most people in the "non-alzheimers" world just don't understand. I hope that you find lots of encouragement, as well as good advice here!!!!
Hi Diana, I did read your previous post, so your post are showing up. I welcomed you on the "New Members" Welcome Again.
Kadee CommentTime5 days ago Hi Diana & Welcome. Glad you have decided to post, besides just reading. As you have found everyone is very helpful. I feel this board & these people have been a godsend to me. They even tolerate that I don't have cats.
Hi Diana, lots of info and folks who have the goods on how to get thru this AD journey with your sanity intact..hopefully:) there are so many topics and good info from lots of posters. lots of good handson experience as well. welcome! divvi
Welcome again Diana! I remember reading your post. So sorry that you felt unwelcome. It does take courage to post and join in on very personal and revealing conversation. We hear you now so please stay with us. We would like to help and we want you to know that we care.
diana, I found one of your earlier posts under the thread "Anyone used a Geriatric Planner", six days ago. A couple of us responded there. I posted a notice that you had joined us on the Welcome new members thread ... which got another welcome message or two, although it did kind of get lost in the middle of notices about other new members.
Your other long post has vanished, diana. You probably hit the "discussions" button, as Starling says, or the "back" button on your browser, before clicking on the "add comments" button. When you do that, poof!!! it vanishes into the ozone forever. I've done this more than once, so has New Realm (aka Diana!)
You can find every post of yours by going to "search", entering:
diana:
(be sure to include the colon after your name), clicking on "comments" and then on search.
We have several threads you may want to respond to. One is "Where are you from", on which we're tracking the various locations where caregivers live. The others, which Kadee maintains, are on the ages of the caregivers and spouses.
Hello everyone, My name is Lullie (female/ 61 years old). My husband was recently diagnosed with "mild cognitive disorder"---nice way to say the A word. From what I read he's now in Stage 3 or beginning 4. I welcome any and all feedback.
Lullie, MCI and AD are not synonymous. MCI can progress to AD, but not always. Some patients hold steady indefinitely in MCI, and some even revert to normal. Nobody's really sure why, as far as I know, or how to predict which patients will get better and which will get worse...
My DH was diagnosed at 59 with MCI. However, his doctor was kind enough to tell me that even though there are a few who don't progress to AD, most do. So when he progressed into AD, I was prepared. I saw some of your other posts, and think it's best that you proceed as if this will turn into AD. Then, if he is one of the lucky ones, you'll be ahead of the game. This website will be a great asset for you--I wish I had known about it when we faced the retirement, driving and other losses that came along early on. How old is your husband?
Marilyn, Thanks for the your input. I am 61 but hubby is older 73. He is very physically fit....walks several miles a day and still drives to his volunteer job doing constructio work! But he's not right....he's okay with others (because it's so mild), but with me he's a nightmare...verbally abusive and controlling. He was always a control freak but now that he's aware he's he has "CRS" he's worse (I think only to prove that he can manage himself)-----I am so grateful so you and all the other ladies (and guys) for your input. I have spent much of my day educating myself to this deadful disease, this wonderful website, and throwing my pity party. Thanks everyone for being open and honest. It's good to know that we aren't alone! Lul
Sunshyne - the reuters site you gave was much more encouraging. The doctor told us 16% of those with MCI will progress to AD when there is a family history. The article doesn't mention family history though.
Charlotte, you'll note that the article is about a very recent study. I imagine your doctor hasn't heard about it yet.
I looked up the study itself. It is what is called a "meta-analysis", that is, it combined the results from a bunch of different studies. The basic conclusion was that the 10-15% annual conversion rate that your doctor cited is only valid over the short term -- the conversion rate drops off pretty quickly.
The abstract indicates that the conversion rate is higher among patients with the "most adverse risk profile", but doesn't have any details. The full paper isn't available online yet, it's too recent (Nov 2008). I'll see if the authors are willing to send me a copy.
A J Mitchell, M Shiri-Feshki. 2008. Temporal trends in the long term risk of progression of mild cognitive impairment: a pooled analysis. Journal of Neurology, Neurosurgery, and Psychiatry 79:1386-1391.
Background: Mild cognitive impairment (MCI) is a condition that carries a substantial risk of dementia. The exact magnitude of that risk is uncertain because of the variations in the definition of MCI, the setting (such as memory clinic versus community) and, equally importantly, the duration of follow-up. Recently, a number of long term studies have been published with observation periods of 5 years of longer.
Methods: In this quantitative review, 15 long term studies were examined and compared with the results from studies using shorter periods of observation, focusing on the annual conversion rate (ACR) of MCI to dementia.
Results: The report identified six long term clinical studies conducted in specialist settings and nine long term population studies conducted in the community. Across all cohort studies with completed follow-up, the mean ACR to dementia was 4.2% (95% CI 3.9% to 4.6%). This was lower than the rate reported in studies of less than 5 years’ duration. The cumulative conversion rate averaged 31.4% in this sample. The proportion converting to dementia (and Alzheimer’s disease) declined with longer observation periods, suggesting that risk of progression diminishes with time.
Conclusion: A 10–15% ACR only appears to hold true in clinical samples monitored over a short observation period. Recruitment of older individuals from specialist centres, particularly involving those who complain of cognitive difficulties (subjective memory complaints) will tend to favour high conversion rates. In the first few years of follow-up, many of those with the most adverse risk profile will tend to progress, dropout or die, leaving a cohort of less vulnerable sufferers. However, an inverse temporal relationship was also manifest in those who completed long term follow-up, suggesting other factors are involved such as sampling issues or heterogeneity in MCI itself.
I continue to believe that your doctor was citing earlier studies that came to incorrect conclusions.
The concept of MCI is only 15 years old, so until recently, it has been impossible to accrue enough prospective data to allow statements on the prognosis to be made with any kind of confidence. The two longest studies published to date both had mean observation periods of 10 years. One reported on subjects with MCI aged 40-85 years who sought help at a memory disorder clinic , and estimated the annual conversion rate to be 4.8%. (This was Visser et al, see below.) The other was based on community subjects (i.e., people who volunteered to be in a study, who were then tested to identify those who had MCI, as opposed to those who had visited a memory disorder clinic complaining of problems.) Of those diagnosed with MCI, 27% developed dementia over the next 10 years, an annual conversion rate of 2.75%. 55.0% no longer met criteria for either MCI or dementia within 6 years (i.e., had reverted to normal.)
The largest study looked at members of a religious order (nuns and brothers), of whom 949 had evidence of MCI at baseline. Over an 8 year period, only 7.5% developed dementia (an annual conversion rate of 0.94%) and almost 15% recovered.
The authors of the paper I received looked at the data from 15 long-term studies. The studies had a mean observation period of 6.02 years (range 5.0 to 10.0 years) Six took place in "specialist clinical settings", and nine were community-based.
Cumulative conversion (that is, the percentage of ALL patients who progressed to dementia in the 5-10 years of the studies) was 31.4%.
The authors compared this with the cumulative conversions seen in studies of less than 5 years duration, and came up with 27.4%. Meaning ... (a) the results in the early years were pretty much the same for short-term and long-term studies, and (b) if the patient is going to develop dementia, it is done early on, pretty much within the first 3 years -- the conversion rate drops dramatically in later years.
Across all 15 long-term studies, the mean ANNUAL conversion rate (this is the rate your doctor said was 16%) was 3.3%. The annual conversion rate was higher for studies on patients who sought a diagnosis at a memory disorder clinic -- 6.7% compared to 2.6% for studies done on community subjects.
The authors commented, "We are not the first to suggest that the conversion rate during the first year of observation does not hold linearly thereafter..." (and they cited three other papers.)
Now, getting to the discussion on risk factors... The risk factors they discussed were atrophy of the medial temporal lobe, CSF biomarkers, APOE4, and neuropsychological markers. They noted that none of these risk factors would be expected to diminish substantially with time -- rather, the effect of age has been to INCREASE the rate at which dementia develops. So why the rapid drop-off in conversion rates? They conclude that patients diagnosed with MCI are a heterogeneous group, who have varying neuropathologies or who have no neuropathology at all. Those with "aggressive" conditions will convert early, leaving a surviving cohort with relatively high resilience. Another possibility is "diagnostic error., i.e., some cases of early dementia are mislabelled as MCI, and these will deteriorate quickly.
Now, they did mention that the conversion rate was "strongly moderated by age" and cited a paper by Visser et al. They didn't explain what they meant by "moderated" (which, to me, simply means "affected" but doesn't imply which way.) So I looked up that paper.
Visser PJ, Kester A, Jolles J, et al. Ten-year risk of dementia in subjects with mild cognitive impairment. Neurology 2006;67:1201–7. The abstract says, in part:
OBJECTIVE: To investigate the 10-year risk of dementia in subjects with mild cognitive impairment (MCI) ages 40 to 85 years. METHODS: We selected subjects from a memory clinic if they met one of the following definitions of MCI: cognitive complaints (n = 181), aging-associated cognitive decline (AACD) (n = 163), mild functional impairment (n = 86), or amnestic MCI (n = 64). Subjects were reassessed after 2, 5, and 10 years. ...Analyses were conducted in the entire sample and in subgroups of subjects aged 40 to 54 years, 55 to 69 years, and 70 to 85 years. RESULTS: The 10-year risk of dementia was 0.27 in subjects with cognitive complaints, 0.28 in subjects with AACD, 0.44 in subjects with mild functional impairment, and 0.48 in subjects with amnestic MCI. ...The risk of dementia increased with increasing age for all MCI definitions (p < 0.001). Depending on the MCI definition used, the risk for dementia ranged from 0 to 0.06 in subjects aged 40 to 54 years, from 0.37 to 0.52 in subjects aged 55 to 69 years, and from 0.77 to 1.0 in subjects aged 70 to 85 years. CONCLUSIONS: The majority of subjects with MCI do not progress to dementia at the long term. Age strongly influences the dementia risk. MCI often represents the predementia stage of a neurodegenerative disorder in elderly subjects but rarely in younger subjects.
Finally, I did want to mention that it's my understanding that a family history of AD has very little impact on the likelihood that you'll develop AD -- unless, of course, they had early-onset familial AD (eFAD). (And please remember that eFAD is very different from early-onset sporadic AD, which accounts for the vast majority of early-onset AD.)
...then I do wonder why the doctor came up with a diagnosis of MCI. And why he would cite statistics that apply to the general population, rather than stats that apply to eFAD. This does not make sense.
Does the family history include one of his parents diagnosed at such a young age? And if the answer to that is yes, why hasn't the doctor suggested genetic testing? That should settle the issue. There's a big study on eFAD that started up recently. If the family history really does look like eFAD (a parent with very early onset, one of THAT person's parents with very early onset, etc) but you haven't had the genetic testing done, you might want to enroll in that study. I'll go look up the web site for you.
The Alzheimer's Disease Research Center (ADRC) at Washington University School of Medicine in St. Louis will lead a six-year, $16 million international research collaboration dedicated to understanding inherited forms of Alzheimer's disease.
Because individuals with these inherited forms of Alzheimer's are widely dispersed geographically, there have been too few at any one center to conduct extensive research. Through the newly created Dominantly Inherited Alzheimer's Network (DIAN), investigators hope to organize and enroll a broad pool of qualified volunteers.
DIAN will include Washington University; a consortium involving Harvard University, Massachusetts General Hospital and Brown University; Columbia University; Indiana University; the University of California at Los Angeles; the University College of London's Institute of Neurology at Queen's Square; and a consortium of the universities of Brisbane, Perth and Sydney in Australia.
DIAN is modeled after the Adult-Children Study at the ADRC. That study regularly conducts detailed physical and mental assessments of healthy middle-aged children whose parents have been diagnosed with Alzheimer's. Researchers hope this will help them to identify telltale changes in the central nervous system decades before the symptoms of Alzheimer's disease become apparent.
They launched their web site about three months ago:
http://www.dian-info.org/
If you are considering participating in the study, or want more information, you can email:
Sunshyne--I hadn't read the info you posted above before--thanks. Our situation seems to be very similar to Charlotte's. DH was dx with MCI, I was told the 10-15 percent per year conversion stats, and there is a family history of EOAD. His doctor discounts EFAD because FIL was dx in his 40's, DH when almost 60. Genetic testing was never suggested, I researched it and decided against it. There would be no change to DH's treatment, his daughter does not seem interested in pursuing this avenue for herself or children.