Will dementia always be an "old persons illness"?

[Big Geordie]

I'am increasingly dispairing of the fact that very few people seem to understand that people in their 40's and 50's can suffer from dementia. The Alzheimers Society has lost some ground recently to Age UK i believe in service provision, something which will not be of benefit to younger sufferers. Is there any reliable data about the age distribution of dementia sufferers? I get truly hacked off by people saying my wife cannot have Alzheimers, "she's too young" or "thats an old persons illness". Trust me she has and its very lonely. She cannot remember her children very well, oldest 24yrs youngest 19yrs. Thinks her oldest sister is her daughter and she has a vocabulary of less than 200 words. She wants to live her life and knows she cannot nor can she tell anyone!! When she's really agitated she clutches her teddy bear (yes teddy bear) and asks if she is going to die, and all the time we see so many older people just throwing in the towel and sitting around waiting to die. Whinge over for tonight!!!

[Grannie G]

The more we highlight young onset the more people will understand.

Most of us with spouses with dementia know the loneliness you speak of , whether our partners are young or old.

Keep posting here. It might help.

[allthings]

Hi i am in the durham area, and going through the same situation as you , it is just you feel so isolated and cannot do anything to change the coarse of things i think it is harder when your loved one is so very young, as my wife is at 52

[Big Geordie]

Hi Allthings, its good to know that there is someone else in the same boat, although i'd much rather neither of us were in it. I find it so difficult at times with people who cannot accept my wife is ill with such an illness, only the other week a chap asked me what nationality my wife was, as she has a distinctive northern accent but could not formulate any words he could understand! There was nothing i could say!!!! Later on i told him the truth, he was shocked, embarressed and totally disbelieving. She goes to a day club once a week where, at 50 years of age she is called "the baby" by other members, the wife doesn't mind, in fact it makes her feel special, but bottom line she is still 15 years younger than rest. Sadly one other member is only about 5-10 years older and she doesn't understand what she is doing there with older people and can be quite "offish" as a result. I'am led to believe that the Society may be pulling out of certain sectors of service provision and that work will be undertaken by Age UK, i cannot believe that will be in the long term best interests of early onset sufferers. Anyway mate, take it easy, good luck and best wishes to your other half from us. Hopefully we can stay in touch. Big Geordie

[allthings]

Thanks for your kind words big geordie, i have sent you a private message.

[Dolly27]

Evening all......yes sadly it is a disease which seems to affect more and more younger people ....I have been diagnosed early onset at the age of 53 ...totally devastated / shocked etc etc ........I am in process of application for early ill health retirement from my beloved nursing , but have been off sick since July ....I intend to do all that I can to raise awareness of early onset dementia ( thank goodness my gp didn't pat me on the head and say don't be silly & send me away )....there is a guy in Torbay called Norman ( norms ) macnamarra who is 54 & diagnosed with alzheimers....an absolutely incredible man who works tirelessly to raise awareness, has written 3 books , writes amazing poems about his experience , & also helped set up Torbay dementia alliance,! Just to document a few of his achievements .... so if you get a chance well worth looking up ( norms is on Facebook ) , I have so much respect and admiration for him .......this cruel cruel life stealing disease must have more money spent on research ..in the meantime people including health professionals , must be made more aware that dementia not only affects the elderly , but also the young......& one day, but probably not my lifetime it will be beaten x

[creativesarah]

i have a friend of 39 with it

guess we will have to keep raising the profile in every way we can

[Big Geordie]

Hi Dolly27, i'am so sorry you have been diagnosed with AD, but nevertheless pleased to make your acquaintenance. I'am glad you were able to find a GP who acknowledged the possibility of your having some form of EOD. Our original GP took i think something like 4 years to explore just about every option except dementia and never got there! We moved and found another more open minded GP who from first meeting in September2010, got right through the diagnosis process and had results by Feb2011. I still wonder to this day if an earlier diagnosis of my wife's condition would have made any difference? However i agree with you, pressure must be kept up to ensure health professionals everywhere are reminded that OED exists and is always a possibility they should consider. My very best wishes to you and welcome to TP. Big Geordie. ps, i'll have a look on Facebook later. thanks.

[brizzleychris]

Oh I do so so agree.....

My wife is 55 and was diagnosed three years ago having suffered for two years previously.
One year was with a great memory clinic team who conducted every test and scan possible before delivering the obvious diagnosis.
the other year was trying to persuade doctors there was a problem. One GP said and still seems to believe you cannot have alzheimers at 50, its the menopause...unreal.
Unfortunately Mum is a sufferer as well but well into her 80's, but it was only because I had sat through many MMS tests and was able to do the same to my wife and confront a doctor with my crude results.
We have attended a group for 'younger' sufferers but thats classed as anyone under 70, so we are still the youngest. The singing for the brain group is also mainly geared to the older sufferer and I dont know the songs or the words, neither does my wife.
These are all necessary and very worth while groups, which I fully support, but there is a definite need for some things geared for the younger sufferers.
Good luck
Chris

[Big Geordie]

Hi Chris, i know the problems of GP's and their opinions of women in theirlate 40's early 50's, it must be hormonal or "the change" many just do not seem to accept it is possible that a woman of that age is a possible dementia sufferer. The problems facing EOD sufferers and their carers are different to older sufferers, especially if they need 24/7 supervision. Our family was split apart, me and the wife going to where we knew the NHS had very good EOD provision (North East England) and leaving the children where we'd lived for nearly 30 years (east Mids shire county) where provision was none exsistent. Its then a huge financial struggle as there is no support whilst a diagnosis is awaited. Even now i see signs in GP surgeries warning of the early signs of most illnesses but i have never seen recognition of Dementia let alone EOD. I have no answer at present on how to heighten awareness of EOD, but i'll keep plugging away at it. Best Wishes, Big Geordie.

[tish]

I'am increasingly dispairing of the fact that very few people seem to understand that people in their 40's and 50's can suffer from dementia. The Alzheimers Society has lost some ground recently to Age UK i believe in service provision, something which will not be of benefit to younger sufferers. Is there any reliable data about the age distribution of dementia sufferers? I get truly hacked off by people saying my wife cannot have Alzheimers, "she's too young" or "thats an old persons illness". Trust me she has and its very lonely. She cannot remember her children very well, oldest 24yrs youngest 19yrs. Thinks her oldest sister is her daughter and she has a vocabulary of less than 200 words. She wants to live her life and knows she cannot nor can she tell anyone!! When she's really agitated she clutches her teddy bear (yes teddy bear) and asks if she is going to die, and all the time we see so many older people just throwing in the towel and sitting around waiting to die. Whinge over for tonight!!!

My niece is 36, 37 next week with the condition. It is very sad and lonely. If i can help in any way then let me know xxxx

[Padraig]

I'm always intrigued how the word 'old' is defined. It has been my experience to observe some 40 year old's with the bodies and minds of people 20 and 30 years older. By the same token I notice people in their 80 plus, physically and mentally more active than some 30, 40 and 50 years old.

Dementia is dementia at any age and life does not come with a guarantee of a number of years. What we can do, is to make the very best of the time we are allotted, by sharing the best gift we have to offer; 'time' with our loved one.

The answer to the question can only be; as the AD numbers increase earlier in life, I believe they will. It would come as no surprise if research reveals that there is an increase of AD in all age groups of modern society. Only then might it be generally accepted that it's not just an 'old persons illness'..

For now most people don't think or plan to grow old. It's less acceptable to be old, hence small fortunes spent on plastic surgery, injections and tummy tucks etc.

[Traherne]

Hi Big Geordie.
Only just caught up with this thread so sorry if my contribution is a little bit late.
Yes, generally AD is seen as an old person's disease but that is because most people with it are old. Young sufferers are a minority but with improved diagnosis, a growing minority. People who as recently as 20 years ago were written off as "gone funny in the head" are now starting to get the diagnosis and support they need.

Don't write off Age UK. Get in touch to see if they are doing anything locally. On the Wirral where I live they have opened a specialist wing in their principal day centre specifically for dementia sufferers under the age of 65. My wife goes there 5 days a week...she is 55 and by no means the youngest there. The work being done there in partnership with the Cheshire and Wirral Psychiatric Trust is amazing. My life would be impossible without Age UK's work. Obviously this is local to Merseyside and may not be TYPICAL of Age UK elsewhere but it might be worth your while inquiring.

[Bodensee]

The problem with AD is that it has similar symtpons to other diseases and cannot be definitely diagnosed until after death. One of my latest threads was moved to the Raising Awareness section look up ' Alzheimers caused by meat' I have put a link to a very intersting article about midiagnosis, this might explain why so many younger people are developing the symptons of AD.
30-40 years ago AD was classed as an old persons problem and they were 'senile', today we know so much more, scientists are getting closer and closer to why so many of us are developing neurological problems, my belief is that not every one actually has AD or dementia, I think my link might just prove that.


There seem to be so many young people developing this disease and just accepting it, my advice would be to put yourselves forward for research, Prof. John Collinge is the governments leading scientist into prion diseases, our GP's have a duty of care to provide us with as much information as possible but in todays society unless we ask we dont get. I am in my 50's and if I had problems I would demand an MRI scan, a cerebrospinal fluid test and most definitely a cjd blood test currently in use at the prion clinic.