I was just wondering how many people on this site are dealing with FAD.My husband was diagnosed 12months ago & his sister was also diagnosed only a few months before him.My children are coping well & realise there is a 50% chance they could develop this disease,but i am worried about my son ( age 10 )he is going through a stage where he is frightened of everything.He walks around the house locking all the doors at night,he looks for things to worry about, he is feeling very insecure & i know this is because he does not have his dads protection anymore,He does'nt feel safe ,I try to reassure him all the time but it seems nothing i say or do can make him feel better, i was just wondering if anybody else was dealing with or had dealt with these issues as well & can give me some ideas on how to help him??
Oh my, a 10 year old having to go through this. My little grandaughter is 9 and I don't know what she would do if her Daddy couldn't take care of her any longer. My heart breaks when I read about the younger people having this dreaded disease.
I'm sure others who are dealing with this will be along shortly. I just wanted to let you know we all care and will help in any way we can.
Our Neurologist's team includes a Clinical Psychologist who works with ME. Her time is charged to "his care". I wonder if you could get some qualified counseling - from a psychologist familiar with the impact this disease has on families...to work with your little boy. He sounds like he needs professional counseling...and there is NOTHING WRONG WITH THAT. We cannot begin to know what fears he has in his litle head, that may only be manifested in his personal fears. The cause could possibly be something totally apart from the dementia situation. Bless his little heart.
I wonder if it is a good idea to let young children know that the odds of them becoming as demented as their dad are as high as 50%. My understanding of FAD is that the gene is present but no one knows FOR SURE if it will manifest itself...and I have never heard the 50% probability statement. This is something our resident research person, Sunshyne, can enlighten me on... But I'd think t would not be suggested that a ten year old be told he had a 50-50 chance of developing this awful disease. That could have something to do with his fears. Small children have no concept of time. They've only experienced a few years, which to them, is "their forever". I am very concerned about this situation. I'm so sorry for you, too. Let's just remember that children also deserved to be spared certain information.
I would tend to agree with NancyB about keeping somethings from your kids for now. Granted they will need to know at some point, but they are going to be watching your Dh/ their Dad go thru the AD journey. It's not a easy thing to watch much less live thru. Knowing it's a possibility for them to someday go thru the same journey is not something to look forward to. I am all about being honest, but I think toooooooo much information can be information overload. A child can only think about the present and basically 5 to 10 year segments of their lives. Kid's under 15 only think about when they get to drive legally, under 20 about when they can order a drink legally. I can remember being 25 and thinking anyone over 35 was just dammmmmmm old. Had someone told me that I had a 50% chance of getting a terminal disease, heck I would have been an even bigger party girl. Give your kids a positive outlook not whats staring them in the face. I think you may need to find some counseling to help your son understand whats going on and how to feel safe now, as well as when your families journey with you Dh AD journey becomes even more serious. And honestly 10 year olds have enough to worry about that adding what might be, is only adding fuel to their already crazy pre teen years. And your kids have a even bigger reminder that will be in their lives during this journey. Knowing it could happen to them would make the strongest of people break. Please seek help for him/them. Rk
When I asked the Nero on my Dh's AD formatting trial what he saw coming in the way of treatment, he said the only real promising thing he saw was a vaccine. Please watch for it, for your kids. I am sure it's a few years out, but worth watching for.
Now for the percentage thing, I had actually read 40%, but honestly do they really know? They don't know enough about the disease as it is.
My kids have had counselling through the alz.assoc & loved it i am in the process of setting up more for them in the next month or so.I didnt actually sit my children down & tell them there was a 50% chance they could get this disease,my eldest actually worked this out for herself.My husbands mother had EOAD in her 40's & although they did not know her ,they grew up knowing that their nanna had alzheimers disease.It was when their dad was diagnosed with the AD my daughter asked the question if nanna had it dads got it my autie also has it that means there is a chance i'm going to get it.I explained yes there is a chance but then there is also a chance that you wont.I have always taught my kids to look on the positive of everything Kids are not stupid I had no intention of telling them anything about statistics they actually asked the question themselves & when i spoke to the counsellor at alz assoc he asked if the children knew it was hereditary & he also went into explaining how they are working hard to find cures & they hope it will not be long before they have something in place whether it be a vaccine or cure.I know it would be very frightning to be told at a young age you may get this terrible disease but as i explain to my kids there are lots of frightning things in this world & if we worry about the what if's we would'nt step outside our homes from fear of being consumed or hurt by something.. I know my children are scared heck i'm scared so it kills me to think what they are feeling but i really feel my son is going through a period where he is frightened because he doesnt feel like dad can protect him anymore & i was wondering if anyone else with children was having the same problems??
My hb - age 61- younger sister was diagnosed in 2005 at age 55. She was also very depressed having never dealt with her hb deaths and then her mom's death. On my hb paternal side, he grandfather had AD. Of their nine children 5 had AD including my hb's dad. What are the chances? I don't know. We don't even know if he has the gene. My hb has one brother a year younger that so far is good.
I am thankful we do not have any biological children. I always wondered why, was depressed but now am thankful.
I definitely would not tell any child under 18 about he/she could possibly get it. If they decide to research when able (even if under 18) then talk with them. Remind your kids that do understand there is also a better chance they will not get it. And in the meantime to live life to the fullest. Do good in school, make good choices, don't waste time experimenting with drugs, and most of all enjoy life.
I wonder if part of your son's fear is that if the house is not locked up he may 'catch' what daddy has. Also, is he trying to become the 'man of the house' now that dad is sick?
I do definately see my son trying to be the man of the house now, he tries so hard to help me out & his dad, but my hubby gets very angry with him because he thinks he is taking over,so a lot of it also is he is lacking self confidence i think.When i ask my son why he shuts the front doors at night he says he doesnt like anyone seeing into the house,he worries that people are going to see inside & try to take our stuff.This could stem from us going on pensions & not having the income we used to have, again nothing i have said it's just that kids pick up on these things.We lived in a big 4 bedroom home 12months ago & had to move 10months ago to a small 3 bedroom home.We are so much happier here we dont have the stress of money worries we had at the other house but kids know when things are different like i said there not stupid.These are just some of the things you have to deal with on top of everything else when kids are involved.Any way thanks for listening i'm starting to ramble on now i look forward to hearing from you all
I raised two sons without a father from the ages of 6 and 4 to adulthood. I stressed that as a total, the three of us, together as a team, could conquer anything, win anything and be stronger than one person ever could be. Perhaps you could try this tact.
Frustratedspouse, Here's my husband's story: His Dad started showing the signs of dementia when Steve was 11 or younger. Pretty soon he couldn't work--money became a big issue--Steve got his first job, bagging groceries, at 11! (His father was in his 40's.) His Mom had to work to support the family; grandmother, who was a nurse, quit her job and moved in to take care of the father. Huge impact on my husband and his sister, who is 4 yrs older than he. FIL ultimately became violent, Steve grabbed a knife out of his hands and saved his sister's life. After that, FIL was institutionalized, died 10 yrs later (in his 50's) in the institution of renal failure after an altercation with another patient. My MIL did a lot of things right regarding raising my husband in this atmosphere--mainly, in summer when school was out, she got him out of the house. Sent him out of town to relatives, to NY to work in a camp, etc. Limited his exposure to the situation. Managed to send him away to college when the time came. At that time, counseling wasn't done, but I think it would be a great idea for any kids in this situation. What effect did all this have on my husband, over his lifetime? First, he became "man of the house" at 11, as stated above. This was not necessarily a bad thing--he became super-responsible--regarding money and the way he lived his whole life. He became a very successful CPA, well rounded personality with lots of friends, wonderful husband and father (still is), always put something aside "in case", got tons of insurance, concerned that he didn't want to put me in the same fix as his Mom found herself in. Had a child by his ex, very young. By the time we married (he was 32) didn't want any more kids, was afraid of passing it on. He has never been tested for the EFAD gene--his daughter doesn't seem to want the info, it wouldn't make any difference in his treatment. Interestingly, since he was dx at 59, his doctor doesn't think it's EFAD. I wonder if his Dad didn't actually have FTD (very young age and violence), and he actually has AD. Regardless, the impact on a child growing up with a parent with dementia would be the same. I wish you the best--although these kids carry a heavy burden, my husband is proof that there is hope for a normal, happy life for them. I love and admire him so much--growing up with adversity--but never feeling sorry for himself nor letting it hold him back.
Forgot to say--the 50/50 chance thing is correct. Sunshyne can corrrect me if I'm wrong--but the gene(s) can come from either Mother or Father--hence the 50/50.
MarilyninMD is correct ... early-onset FAMILIAL Alzheimer's disease (eFAD) is caused by a dominant mutation in one of three genes. There are about 144 known mutations that can cause eFAD. If a person carries one of those mutations, that person WILL develop eFAD, at an early age, and has a 50/50 chance of passing the mutation on to a child.
eFAD is not the same thing as early-onset sporadic AD, the latter being the same thing as late-onset AD. The cause(s) of sporadic AD are still unknown, although a number of risk factors have been identified. APOE4 is a known risk factor, but that just means you are somewhat more likely to develop AD if you carry APOE4 ... you can have that gene and never develop AD, or you can develop AD and not have that gene.
If a person develops AD at a young age, but neither parent did, then that person has sporadic AD, not eFAD.
Because of the confusion caused by arbitrarily labeling sporadic AD diagnosed before the age of 65 as "EOAD", which is a far different thing from eFAD, many people are trying to change the nomenclature.
The very first patient ever diagnosed with sporadic Alzheimer's by Dr Alois Alzheimer was 51.
So.Sunshyne....what would you have suggested Frustrated Spouse do with this information, pertaining to giving this information to her young children. I'm particularly concerned about the young 10 year old who is so afraid of "what might happen" and "the bad guys coming into their house to take away their things" as she described.
Oh, Sunshyne I see - the "sporadic" points to the incidence of AD in a family tree, as opposed to A PERSON just sporadically having AD and NOT having it. (which is what I was rather hoping: this week he has it, next week he's normal..!)
Nancy, we talk about whether or not to do genetic testing on the AlzAssoc from time to time. Usually, though, it's for older children (adults), I don't remember anyone mentioning children as young as frustratedspouse's.
I personally absolutely do NOT think a young child should be told, for a lot of reasons. They are very unlikely to understand what they're told. They are too young to know how to deal with it even if they DO understand (so are we!). There isn't anything they can do about it. And maybe there will be a cure long before they have to worry about having the gene, who knows?
When a child gets old enough to start thinking about reproduction (or not worrying that they MIGHT be reproducing), then I think it's time to talk. The odds they will pass it on if they have it are high, and the disease devastating. Adult children should know what the situation is, so they can decide for themselves whether they want to be tested, and/or whether they want to risk passing eFAD on to their children.
It does sound as if the poor little boy might benefit from counseling, bless his heart. Also, what about a Big Brother?
I agree. Frustratedspouse's description of his fears just broke my heart. I would hope that he will continue to get special counseling, one on one, instead of in a group or with his family.
You may recall, Dr. Doody at Baylor practically "insisted" DH's children NOT be tested, although he had the gene. Too often, this info can get into the wrong hands, and what good is it to know about it today. We have enough to worry about.
NancyB--As is was explained to me, the only good reason for an adult child to be tested is that through today's scientific techniques, people can prevent the gene from being passed on to future generations. For example, if EFAD runs on the mother's side of the family, she could be tested, and if positive for the EFAD gene(s), have eggs extracted, fertilized, then an egg without the gene is implanted back in the mother.
My husband's two sisters and his niece have/had AD. Two are deceased and lived with AD for over 15 years. His father did not have it but his mother died young (60) of colon cancer so we don't know if she was going to get it. DH's two children from 1st marriage (a long time ago) we are married over 34 years, are now in denial and have simply stopped calling or writing or anything communicative. I think they think it's catching. So it's just me and the caregiver that stays home when I work. Sigh.
My DH's children are in their 50's...so it's "too late" to think about passing it on to their children, in their case. What I want to say again...and believe with all my heart, is that by the time the ten year old is 50 or older, there WILL be a cure for this hideous disease.
marilyinMD thankyou for your husbands story it sounds very simular to my DH.He grew up with his mother being diagnosed when he was 10.He also had a lot of responsibility around the home & unfortunately there was no couselling available to them either.My husbands family are very simular to your husband they dont hold back on anything they have all set themselves up with lovely homes they are extremely hard workers & never feel sorry for themselves.As horrible as this disease is i believe that when you come out at the end of it you are a much stronger person.As a friend said to me when i was stressing to her my worries about my kids having to deal with there dad having AD " Your kids are going to be able to handle anything anyone wants to throw at them by the time they are adults""anything they come up against will be nothing compared to dealing with this".I have a wonderful relationship with my kids they both know they can talk to me about anything we have always had this relationship & that is how i know my son is feeling so scared he comes & tells me if he were withdrawn & quiet I would be really worried but we have a very strong family unit inlaws, my parents, as well as teachers ,counsellors ,headmasters. I have set up counselling for both my kids at school as well as through the alz assoc & they know they can go there at any time & talk.Thanks again for everyones concern I will keep you updated on my sons progress he is going through some photos at the moment to take to school & we are about to go on a family holiday to queensland which we are all very excited about too... god bless you all
I cannot overemphasize the extended family's role in my husband's life--it was a major factor in his success, his outlook and his actual "survival" of his childhood. It sounds like your kids will have that, from relatives as well as the teachers and counsellors. One thing that may really help, and I think it was mentioned above, is if you could get your son a Big Brother. My husband says he "never really had a father" and it was a real loss. So much so that at a very young age, he actually married his ex because she has a wonderful father (sounds weird, but true). Her father became a role model for him-influenced him in many ways--we are still in touch with him--he is in his 90's and ironically, has AD.
One thing you can encourage your children to do, as the years go by, is to strike a balance between living for today and saving for the future. In retrospect, I am in awe of how well my husband did this. We travelled all over the world, didn't wait for retirement (good thing), had a nice lifestyle--home, cars, etc. At the same time, he put away enough that our futures are secure and I can get the best kind of care for him that is available. When they are adults, they should seek professional advice on the financial matters--never too soon--and buy long term care insurance--if possible, with lifetime coverage and no dollar cap, as early as possible. Hopefully, they didn't get the bad gene(s), but these things should be done just in case.
All of my children are continually reminded of the importance of LTC insurance. I don't think they have bought any...(one might have..he's in the insurance industry).. One even said that by the time they are this age, there will be a cure. BUT, I respond, what 'else" may be out there ...
Younger people think they will live forever...and "that will never happen to me".... and we see in nursing homes that even young people who have suffered tramatic head injuries are having to receive care.
When I purchased our LTC policies we were told that young people as Nancy mentioned are the biggest users. Due to the high cost I almost cancelled the policy. Within the week another nurse I worked with had two strokes and another nurse developed pulmonary emboli after a fracture. Don't know where I'd be now without the policy-but I know I'd either be dead or crazy.
As it turns out my son does have a big brother figure my brother takes him under his wing ,takes him to football matches,he spends weekends with him playing with remote control cars & he is heavily involved with a football club which my son loves to watch his uncle play in.I asked my son the other day what he thinks might be making him so scared & he mentioned a incident a few months ago when a gang of youths stopped our car in the middle of the road & wouldnt let us drive ahead,they were very drunk & as i drove off one of them kicked the car.I had actually forgotten about the incident as it was reported to the police & the youths were delt with accordingly, but obviously this played on my sons mind so hence the being frightened has come from this i would say & also not having dad to protect him.As for having children tested for EFAD that is not allowed here in Australia & is not something I would have done to my children at a young age anyway.That is a decision they can make for themselves when the time is right.Once they are 18 they can be tested but this is not something I will encourage them to do.The only concern I will tell my children about is that they try to avoid passing down the gene.As mentioned above there are ways of concieving now without having to pass any family hereditary condition down to a child ( thank goodness)... I was also wondering if maybe Sunshyne would know if it is possible to have a AD gene but not develop AD but still be able to pass AD onto a child?? Has anyone heard of this happening??
Frustrated, that is not possible for the eFAD genes. eFAD genes are what's called "dominant" -- if you have one of them, you will develop AD at an early age.
You are thinking of "recessive" genes, where you have to have two copies of a gene -- one from each parent -- to express the phenotype. To my knowledge, there have not been any recessive eFAD mutations identified.
My husband is 53 and has the APOE4 gene. His Father died at 46 and his aunt and uncle also died in their 40's with Alz symptoms. He has five brothers and sisters and two of his sisters have been diagnosed but not gene tested. I have two sons ages 24 and 26. He is currently involved with a research program at UCLA and was approached by one of the doctors about our adult sons. There is a new research program that they are starting on adult children (that have no symptoms yet,) of confirmed eFAD families. I talked to them about it, (they have lived with this nightmare for 10 years now) and I know neither one of them are ready to know if they have the gene or not, but I explained that just being in the research program would better their chance of a cure. I said that they could probably opt out of finding out the results of the tests and just participate so their name gets in the system in case a vaccine comes along. My youngest son is going for it, my older one is still on the fence. I told them it's totally their decision and I would support them.
Oh, Denille, this has to be so difficult for your sons - as well as you and your DH. While any type of dementia is difficult, I'm sure it is even more so when you are so young. Bless you and your family.
Thankyou Sunshyne you are a blessing to this site & Denille I'm sorry you are going through this hellish experience as well,I know if i was coping with just my husband it would be bad enough but when kids are involved it just makes this horrible experience 10 times worse.I am going to study up on this whole gene thing a bit more it still confuses me a little & i am attending a course at the Alz assoc in April so hopefully i can get some more info from them too.Thanks again for all your help.