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Aden's mummy
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PostSubject: Alzheimer’s ?   Mon 28 Jul 2008 - 20:40

Anyone know the percent of people with Ds that end up with Alzheimer’s ?
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Di
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PostSubject: Re: Alzheimer’s ?   Mon 28 Jul 2008 - 21:22

I'm not sure of the exact details but I know it's believed to be very very high. The problem more our kiddies is that it's often early in its onset as I understand it. There was however a positive study recently which Dr Len Leshin referred to (if you don't know about his site www.ds-health.com bookmark it - it's an absolute and accurate source of info for DS).

The study is referred to here

http://www.ds-health.com/abst/a0712.htm
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Tim and Tuscan
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PostSubject: Re: Alzheimer’s ?   Mon 28 Jul 2008 - 22:02

I just stole this from here.

Q. How common is Alzheimer's disease in individuals with Down syndrome?

A. Estimates vary, but a reasonable conclusion is that 25 percent or more of individuals with Down syndrome over age 35 show clinical signs and symptoms of Alzheimer's-type dementia. The percentage increases with age. In the general population, Alzheimer's disease does not usually develop before age 50, and the highest incidence (in people over age 65) is between five and 10 percent. The incidence of Alzheimer's disease in the Down syndrome population is estimated to be three to five times greater than in the general population.
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Aristocat
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PostSubject: Re: Alzheimer’s ?   Tue 29 Jul 2008 - 5:44

I wonder if those statistics are changing as everything else with DS has, as we gain more knowledge about the possible challenges. Like does diet, lifestyle etc. have any impact. Things like that, that would possibly of had a negative impact in days gone by?
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Carol
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PostSubject: Re: Alzheimer’s ?   Tue 29 Jul 2008 - 7:22

Is it wrong to act like an ostrich on this one Embarassed . It is one of those things that I hope changes as Brielle gets older.
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PostSubject: Re: Alzheimer’s ?   Tue 29 Jul 2008 - 18:32

I reckon that this has happened because people with DS haven't had the opportunity to keep their minds active, especially as they get older. I know one man in his 30's who is suffering awful depression because he is well aware of his differences and has lost hope. I know his parents and although they have done all they thought they could do, they still think more negatively about DS than most of us. They still believe in segregating kids with disabilities.

Our kids are going to get more opportunities to involve themselves in the world because views are changing not only in the DS community but gradually in the community at large. More and more we hear stories of people with DS getting married, working at their own businesses etc. Our kids will grow up knowing that they can have a good life and having an expectation of achieving what they can. Many older people with DS have grown up with no real expectations or plans for life and I believe that contributes to them succumbing to Alzheimers.
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PostSubject: Re: Alzheimer’s ?   Tue 29 Jul 2008 - 18:57

Tigger I think you are spot on.
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PostSubject: Re: Alzheimer’s ?   Tue 29 Jul 2008 - 20:06

Great point Karyn I hadnt thought of it like that before. Lets hope that you are right Very Happy
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PostSubject: Re: Alzheimer’s ?   Tue 29 Jul 2008 - 20:13

Thank you all for your thoughts
[quote="Carol"]
Quote :
Is it wrong to act like an ostrich on this one Embarassed . It is one of those things that I hope changes as Brielle gets older
Carol, sorry to bring it up, I'm like you keep pushing it away, till now that is.

I'm more curious after reading the thread that one of the dads posted, with that link to the video, I keep seeing the green brain cell things and how they don’t grow the same in our kids.
I found that link really helpful by the way.
Karyn I think your right in some sense , I’ve heard that for people with A they really do need to keep their brains active. I’m convinced I’m going to get it, because one day Matthew (son#2) asked me what a fruit was in a book I couldn’t for the life of me remember the name of it, I felt so silly, I knew I knew what it was but couldn’t’ recall it. It was a strawberry lol took me to walk away come back to it, stare at it more then I could recall the name. it’s happened a few times now. Freaks me out so much.
I hate this part for Aden if he gets it.
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PostSubject: Re: Alzheimer’s ?   Wed 30 Jul 2008 - 7:46

Quote :
I know one man in his 30's who is suffering awful depression because he is well aware of his differences and has lost hope. I know his parents and although they have done all they thought they could do, they still think more negatively about DS than most of us. They still believe in segregating kids with disabilities.

Thats really sad. I read on an American forum of a young lady around 26 who had DS and she was really depressed and she hated who she was.

Quote :
Our kids will grow up knowing that they can have a good life and having an expectation of achieving what they can.


Here here!! cheers Shower of love
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Di
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PostSubject: Re: Alzheimer’s ?   Wed 30 Jul 2008 - 8:40

I know this is more common in our kids but it's probably worth pointing out that lots of normal adults get depressed and aren't happy with who they are. I think it's important they develop skills that allow them opportunities to do things well that they enjoy, and can do well. Ie special olympics, movie clubs, etc. I think important also that they continue to build lots of relationships. My hope for Isabella is that she has access to peers that she grows up with through family and friends and work and also other similarly abled friends that she can do fun things with within their own skill levels.

In regards to the Alzeimers, I do worry about this but am confident we will know more about it by the time our kiddies get older. I agree that stimulation can help keep it at bay.

Also worth noting that we worry so much about our kids with DS, but really there is so much that can go wrong across the board (eg no-one is going to say at birth "poor Fred, you can see he has a 1 in 5 chance of having a mental illness, having an accident, becoming addicted to Ice or becoming a violent moron, etc". I don't really know what the stats are but you know what I mean.
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PostSubject: Re: Alzheimer’s ?   Wed 30 Jul 2008 - 10:23

I do agree that many people aren’t’ happy with themselves and that isn’t’ just exclusive to our kids with DS. However I do know that raising a child with visual differences, ones that stand out to others takes a different approach, weather that is because they are Too short, too fat, too thin, burns victims or the child has a repaired cleft lip and palate (like my eldest child) there are different challenges to ensure the Childs self esteem and self worth are in take
Quote :
Also worth noting that we worry so much about our kids with DS, but really there is so much that can go wrong across the board (eg no-one is going to say at birth "poor Fred, you can see he has a 1 in 5 chance of having a mental illness, having an accident, becoming addicted to Ice or becoming a violent moron, etc". I don't really know what the stats are but you know what I mean.
I don’t agree and I have heard this said from so many parents of kids with Ds on forums, so sorry to pick your post Di on this day, but I have to get this out.
So to answer your question, no I don’t know what you mean,.
There are family’s that do say “poor Fred” believe me we have mental illness in our family and it is something that is discussed. Every second generation there has been suicide my father was the last so this means that one of mine or my sister children’s are more at risk and yes we think about it.
Any one my husbands side of the family there are a lot of Dx’s of ADD, ADHD ODD…. This also means that our children are at more risk to drug taking, violent… I’m not kidding either this is something myself and sister in-laws have talked over with our family psychiatrist. I guess if it’s in your family you understand that this is something that is a concern and if not you wouldn’t know that this plays a big part.
Even at my DD’s school when she was having some anxiety, can be very normal in teens. The school reacted very differently, once they knew of our family history. Mental health was contacted by the school counsellor, start after I told her our history. She asked because it dose make that much difference.
Anyway I think it’s fair to say I worry about all my kids and know very well that all those things you listed and more are there and I try and do the best I can with that knowledge of knowing they are at more risks…
I think many parents worry about there children weather they have Ds or other visual differences as much as parents with hidden venerability’.
Oh and I’m very aware of Cancers too, DH’s Nana had a breast removed. To be honest I think of lots of those things and try and put things in place, like teaching my DD about keeping a healthy mind as well as examining her breast…
My point really is I have children that I’m concerned about their future health, I would prefer not to think about it but know knowledge is power. If I cant come on here a forum to ask questions that I’m concerned about, to do with Down syndrome then where?
It’s not that I’m stressed to the hill with this Alzheimer’s thing but it’s good to know about to.
Odds are worth knowing…
Off Topic but
I do think I’m at a place now to were I can deal with this information. I know one thing about these parenting forums for parents with Ds is that you often read something your not ready to face, deal with or think about. But ti’s there in your face when someone else asks a question that is unfortunate but the benefits to these forums I think mostly outweighs all that.
And I want to feel like I can ask other parents any questions without the fear of being judged.
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PostSubject: Re: Alzheimer’s ?   Wed 30 Jul 2008 - 14:40

Hi Aden's mum,

Hope my post didn't come across the wrong way. Your examples are the exact examples I am referring to - and you worry about these things because your family may be more susceptable to them but they can occur in families that don't think about these things at all.

And yet with DS, and your examples, we always seem to think of them. No-one more than me. Infact, I could answer the original question and offer the info of it happening earlier with our kids because I am an information addict and had read up on the alzeimers link by the time Isabella was 3 months old I think Smile. I can't stop seeking out info on DS. I don't spend the same amount of time seeking out info on my other kids (well, maybe I do - I got into a panic because DS1 was born in September after I found out Spring babies are more susceptabe to schizophrenia, infact I do actually seek out info on them a lot too come to think of it).

But I wouldn't change the way I am at all. Because of it I could get on to things much earlier with Bella (eg grommits, sleep apnea, etc) that I wouldn't even have know about if I wasn't such a sourcer of info. And if there weren't such things as forums to learn from.

So again, sorry if I came across the wrong way. I certainly think the more questions that are posted the more we will all learn. I'm a big fan of questions and opinions and even stabs in the dark for answers Smile

Di
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caspearson
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PostSubject: Re: Alzheimer’s ?   Sat 2 Aug 2008 - 0:33

Di wrote:
I am an information addict and had read up on the alzeimers link by the time Isabella was 3 months old I think Smile. I can't stop seeking out info on DS.

I'm so glad Di! I read read read read read for the first 6mths until the information became too heavy to bear. I see your point about these things happening to anyone. I guess though, in some ways we have the advantage of being aware of the likelihood and things that we may be able to do to help. Oh the burden on parenting and wanting the best for our kids!

Cas

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PostSubject: Re: Alzheimer’s ?   Sat 2 Aug 2008 - 5:47

Di I read as much info as there was at the time when Andy was born. Most of that info consisted of an okay but almost outdated book that the ei team gave me in hospital. We didn't have a computer even back then!

I understand too what you are saying about the worry. This is something that I always try and get people to understand. Unless you are aware of a predisposition to an illness/disabiltiy etc. you don't seek the info. and just take life as it comes. The path that any of our kids lives will take is such a huge variable, yet with the DS involved we crave to know so much about every little step.

I must admit I am finding it tricky having a 17 year old, to allow her to make her own mistakes and let her experience the good and bad in this world! Hopefully dealing with this now will help me prepare Andy for similar things!
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PostSubject: Re: Alzheimer’s ?   Sun 31 May 2009 - 19:29

A lot is not known about Down's Syndrome and the memory loss that comes with it. A professor I used to work with said that what we call Alzheimer or dementia now might one day be a series of diseases in stead of just a few.

Apparently, the memory loss that is common with Down's Syndrome lasts for a long time before other symptoms appear. A 60 year old woman with DS I worked with had some memory loss for 10 years before other symptoms appeared. This is not a sign of Alzheimer, but specific for when dementia starts with DS, so maybe research will give different diagnoses when our kids get older. The 72 year old flatmate with DS who lived with my 60 year old client had no memory loss at all. And they lived completely independant.

I know this is not scientific research, but really, I am not worried at all, because I have seen how it is possible to live independant, even with long term memory loss.
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PostSubject: Re: Alzheimer’s ?   Mon 1 Jun 2009 - 8:02

Hi all,

This is something that I am really interested in (as a result of studying psych at Uni) and so I was really excited to go to the launch of a new booklet titled 'Down Syndrome and Alzheimer's Disease' a few weeks ago. The booklet was funded by the government and put together by Alzheimer's Australia, Down Syndrome Australia and the Centre for Developmental Disability Health Victoria. All of the DSA's had the opportunity to be involved in the editing process too.

This may turn into a bit of an essay but I will share what I know:

The reason there is a higher incidence of Alzheimer's disease in people with Down syndrome is due to the genes found on chromosome 21. There is a brain protein called amyloid precursor protein that is thought to be associated with the development of Alzheimer's disease. The genes linked to production of APP are found on chromosome 21 so a person who has 3 copies of this chromosome instead of 2 are producing one and a half times the amount of APP. Hope that makes some sort of sense!

Recent figures for rates of Alzheimer's disease in people with Down syndrome are somewhere around 50% of people aged 60. The average age of diagnosis is now somewhere in the mid 50's which, as someone mentioned before, is thought to be the result of better education, nutrition, health care and and enriched adult life. At first glance 50% seems really scary but I guess you have to look at it from the positive side that it means that 50% WON'T develop it by age 60 which is a huge improvement on past numbers.

I am pretty sure all DSA's were sent copies of the booklets to pass on so if you want to have a read I would recommend contacting the Association in your state. It covers the basics of what you need to be looking out for and keeping a record of to make diagnosis an easier process - definately worth a read!
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