I was wondering if Early Onset Alzheimers is in your experience mostly genetic? DH is 54, the youngest in his family and his mother is nearly 87 years old. From what his sister tells me, no one in his family ever showed any sign of the disease. But I've been wondering if it could have skipped several generations? Or maybe someone had it and no one knew because of other health problems that masked it? It's all speculation on my part, but since we have 3 young kids, I wonder if I should get a genetic test done? His neurologist discouraged it when he diagnosed him, I think because he felt it wouldn't do any good, only serve to add to our grief. But I wonder if those of you with kids have had LO tested for the gene? If it was positive, did you have your kids tested? Any information on this is helpful.
Kelly, I don't know about the genetic connection, but I do know that I do not want my children to be tested. What is there to be gained? Who really wants to know what horrible disease will bring about their demise? Besides, do you want the fact that they have inherited a gene for a terminal illness to follow them for life. They will never be able to get life or health insurance and who would want to hire them for fear they would become incapacitated....? "Big Brother" is everywhere today.....
I have four grown children, and my two sons (who definitely have their father's genetic make-up) are now concerned that they too will develop AD. One daughter is concerned, because she has the same allergies, etc. that her dad has, but the other daughter isn't concerned because her genetic make-up is more like mine. Only one of my mother's siblings had AD (out of 6) and their mother, who lived to be 95 and had a keen mind to the very last breath, didn't have it either. My AD aunt's children are in their 60's and 70's and do not have AD. My father's family was long-lived and no AD. I'm not certain that I can believe as yet that the type my husband has is genetic. Most people wouldn't want to know that they have that "gene" - it would have them living their lives under a death cloud, and with not knowing, at least they can have hope that they can escape inheriting that gene.
EOAD is only clearly genetic when it is, specifically, "familial alzheimer's." In those cases, one parent will have had it, and 50% of the siblings, statistically, will also develop AD. Generally, in these cases, onset is quite early--like 40's-- and it will be very obvious that it is common to that family.
My husband was diagnosed at 58, and has NO family history. Neither parent, no cousins, aunts, uncles, and none of his 4 siblings. They do say that they think (in cases that are NOT familial,) that there may be a genetic susceptibility. In other words, having a certain set of genes does not mean that you will develop AD, it simply means that given certain environmental factors and/or insults, you may have a higher probability than someone else. I decided against genetic testing, because I think that whatever set it off in my husband is a situation that occurred early in his life and is not something that any of my children experienced, so why freak them out?
I have been to many conferences where the genetic component was discussd and explained. There are two different issues here. When the disease strikes a family member in their later years, - 70's and 80's - their children are probably no more likely to get it than anyone in the general population of that age - there is a slight increase in probability. They say now that if you live long enough, everyone will get it. I don't believe that either because of the large number of elderly who are extremely cognitively sharp.
The other issue is EOAD. Unfortunately, if the disease strikes the very young - 50 and under - that is when there is a very high probability that it will be passed down to the next generation. It is ironic, because the younger victims are excluded from the drug trials. Tony tried for years to get his wife (she's in her early 40's) into a drug trial and he has been consistently turned down because of her age. How stupid and short-sighted that is.
Look on the left side of the website, and scroll down to view the CBS video that tells the story of one of our readers whose family is struggling with 3 members who have EOAD.
Sorry, I don't mean to be the bearer of bad news, but Kelly asked, and I am passing on the information that I learned at the conferences.
It is definitely on Sid's maternal side. His grandmother and aunt had it, but not until they were at least in their 80's. He started showing subtle signs around 58; difficulites serious enough at age 61 to have to stop working.
I have been told that my wife's EOAD is 99.9% genetic "familial alzheimer's" and can only be 100% with a brain exam. There are a few genes that have been isolated that if shown to be modified by testing indicate a prerequisite for EOAD. In her case we decided to have the test done, and unfortunately we know the results.This is a dominant gene that does not skip generations but can siblings. Her dad had it but his brother and sister didn't. My wifes brother and sister decided not to get tested, there choice I only told them there is a test available. As for my sons I have not told them any of this yet but I have a good idea they already know. I don't want to have them tested and I was told they should not get tested for the same reasons Sandi pointed out. There may come a point and time later in there lives when they would want to get tested but let them be worry free now. I'll do the worrying and praying now. God willing by then we will have a cure. If anyone wants more info on how and where to get tested let me know.
No one in my DH's family had AD except for one aunt who was elderly. I believe my DH had what I call silent AD because from the time we were in our 20's he would say and do unusual things, not anything you could really put your finger on. But people would comment to me and I just thought it was his nature, it didn't bother me all that much and I loved him. Looking back, talking to our children, I think it became evident something was wrong in his early 50's but still, nothing was done, nothing was said. At his 60th birthday party everything seemed fine until I saw the videos and realized that he seemed apart from everyone else, his reactions just were not normal, altho I still had no idea I was dealing w/a brain disease. Finally it slapped me in the face when he was about 63 and I took him to the doc, diagnosed w/short-term memory loss. Now I realize that by then he had had AD for decades, it's just that no one knew--and at that time, there was nothing to do about it anyway. His nephew has done geneological research back many generations and no one had any sign of such things. Certainly no one currently has any such thing and I know of at least 100 relatives. So where did it come from? Was it really EOAD before there was that designation? He doesn't seem to fit into any of the current categories. I have believed for years that it was a recessive gene that was triggered by something in his early life--or who knows--do any of us--any of you? I think our best hope for stopping it and other conditions is to be working on our DNA--just get it out of there! And, no, there would never be any testing for the children or g'children, never.
We have been told that EOAD is genetic. We have three children 28, 32, and 33. They have not decided to be tested and we are hoping that in the near future there will be a cure. Shortly after my DH was diagnosed, our two oldest children were told they have MS. Another worry in our family to have deal with at this time.
Not all EOAD is genetic. Familial AD accounts for about 2% of the total AD population where EOAD is 10%. There are three know gene mutations for eFad- PS1, PS2 and APP. If you have these genes is not a matter of if but when (before age 65). Offspring of parents of eFad have a 50% chance of getting the mutation. Athena Diagnostics is the only place in the US that performs these tests.
ApoE4 is a gene that increases risks in both early & late onset. Below are excerpts from the Mirage International study that was completed earlier this year. Some of the facts are startling.
The MIRAGE study found that having one affected parent endows a lifetime risk of getting AD of 37 percent, while for those with two affected parents that jumps to 54 percent. The latter figure translates to nearly five times the risk in the general population
Looking beyond the parents, the researchers found that the parents’ own history bears on their children’s age of onset. Children with affected parents having no family history had an average age of onset around 72 years. This fell to 60 years if one parent had a family history, and 57 years if both parents had a family history. This may be related to gene dose, suggest the authors
my husband was diagnoised 2 yrs. ago at 50. his paternal grandmother had some sort of mental problem and died in an institution. i pray it was not alz. i so worry about that. it is always in the back of my mind. we have 3 grown children and 2 grandchildren. i would never do the testing to see if any carried the gene,it would destroy lives.i just couldn't bear to know,unless it was all good news,and there is no way of telling. my husband had a severe shock working on the washing machine when our children were little,and i have wondered if this could have activated this disease some way. i just have to live day to day now,and sometimes hour by hour.i can't bear to look towards the future. i have alot of things i need to take careof,i know. legal things,power of attorney,etc... this is the first sight or group i can actually relate to about alot of things. i am afraid i am getting sick myself. i just feel terrable most of the time. my daughter says i am depressed,but i take lexapro. i am wondering if i have chronic fatigue. i keep thinking i will get to feeling better.
Jav: We are so glad you found this group, but not the reason. Living in the now is how I survive. The future is something we do not want to think about, but do get your legal afairs in order. Most of all, take care of yourself and see a doctor to make sure you are allright. You may need to change your anti-depressant, so talk to you doctor it Lexapro is not working. I had to change from Lexapro as it stopped working for me. My LO was diagnosed six years ago at age 58 with familial AD. Three of his seven siblings have had AD. He has no children (he helped me raise my children), but he worried about his nephews and nieces. After he was diagnosed we were able to do some traveling and tried to enjoy the time we had together. He has no memory of this time, but it is close to my heart. Darlene
Dear Jav: Please do as Darlene suggested, get those legal papers in order, see an attorney ASAP. If you think it is hard now, just wait until you need those legal papers & they are not there. Also, your posting, to this non-medical layperson, does sound like you are depressed and unable to do things the way you should. Of course, AD will do that to a caregiver, but you seem stuck someplace thinking you will get to feeling better, but it doesn't happen like that. You say you think you are getting sick yourself. Please see a doctor, please. My adult children were a great help to me--just their understanding. I hope that yours are, too. Confess your feelings & needs to them, ask them to help, you are their Mom, they don't want to see you get sick, too. And those little ones need a grammy.
Welcome to my website. I am glad you feel you can relate to what is written here. That was my purpose, because I could find no help elsewhere. I say it all of the time, but it continues to be true - no one but another spouse understands our emotions.
And ditto to what everyone else said - see your doctor. You need to take care of your health.
When you get a chance, check out the "Previous Blog" section on the left side of the website - I know you will relate to most of what has been written.
I must say that unlike you guys, I want my sons tested and I think they do too. If I were 40 years old and knew there was a test to see if I were likely to get some disease that would affect my quality of life in the not-too-distant future, I would want to know. There are trips and experiences I would want enjoy with my family while I could. I wouldn't want to work and plan blindly for retirement if there was the probability I'd be unable to function when retirement came. We were lucky in a way. As soon as my husband's health began to decline, we made a list of things we wanted to do and we set about doing them. We were lucky we had the time. So many people work long days and don't enjoy their families. Do you think they would do that if they knew they would be incapacitated at a relatively early age? Of course, my husband doesn't remember those trips, etc. now but the rest of the family does with great fondness and appreciation for the togetherness we shared.
I can understand Bebe's point of view, and I certainly have no argument with it. Very individual decision. At the same time I tend to think that forgoing trips and experiences in favor of planning to do everything in the future is a wrong attitude that we absorb from our culture. No one should work slavishly and push everything off into the unknown future, but sometimes it takes a Dx like AD to wake us to realizing that. Even those without a higher genetic probability for AD are living life without guarantees that there will be a future.
I see EOAD as a giant monster, waiting outside my door to attack me. But the door is closed, so I am not sure there is a monster. To not be tested means that I sit inside and worry about whether ir not there is a monster.
But if I were tested, I would either find out that 1) there is no monster, and I am free, OR that 2) yes, there is a monster, and I can stop worrying about whether there is a monster and start planning on how to deal with it.
Stupid AD. It is wrecking my life no matter what I do.
But don't forget to get Long Term Monster Insurance BEFORE you find out whether he's out there. Otherwise you are screwed. Insurance won't pay for monster attacks if you already know about the monster.
Emily, as you commented on traveling and the future, we have always enjoyed traveling, and took the children and had wonderful vacations every year. Once the children were grown, my husband and I took cruises, tour trips, and road trips (sometimes our grown children wanted to come with us, and that was fine too). We always lived our lives to the fullest, because no one knows what lies ahead. Both of our fathers had died at 53 (one from cancer and one from a heart attack), and they had made all these plans for their retirements that didn't get to happen, and we weren't going to have that happen to us. I thank God every day that we had these fabulous vacations, and scrapbooks and stories we wrote of each one! My husband gets out a scrapbook or two every week to remember and relive a trip.
I know I commented earlier that people wouldn't want to have to live with the knowledge that they had the EOAD gene. I have to retrack that. Also, I can't speak for my children. That is a decision that each one of them can make for themselves. My husband didn't get it until his 60's, so I don't think his is the famial AD. Is there a separate test for this, or is it determined by at what age they develop the AD symptoms?
Also, remember to have your children buy long term disability insurance and huge life insurance policies before being tested. Once the genetic testing is on record their ability to buy these will be severely limited if they are allowed at all. Thank goodness my husband had bought a disability policy 10 years before being diagnosed and it was a Godsend for the eleven years he lived with the disease.
I'm just catching up on some discussions so, sorry for the late response. Robert did have genetic testing back when we were trying to figure out what was going on. He has the APOE4 gene. I was surprised to read what Trish said about APOE4 being a risk factor for both early and late onset AD. When I've tried to research it, I've always seen it associated with the late onset. So, that explains a lot to me. Robert is now 47 was diagnosed at 46. He has no family history whatsoever of EOAD. His maternal grandfather had what his mother will only call "dementia" but not until well into his 80's. So, it seemed Robert won the AD lottery.
I have a grandfather in his late 80's entering the latter stages of AD right now. I worry about my children. But, the Bible tells me not to worry about tomorrow. While that is extremely hard for me to do, I think that is good advice. I'm just going to pray and expect a cure so that hopefully my children will not suffer the same as their father. Just call my Pollyanna....
If it's any consolation we have a friend who was diagnosed in 2002. She tested positive for APOE 4 and after six years still does limited driving and continues to do well on Excelon & Namenda. She had no family history of AD.