Are there really so few of us? A bleak future ahead for the "few"?

Big Geordie

Registered User
Feb 6, 2012
73
0
North Tyneside
I've been browsing this forum for a few weeks now and started to wonder just how unique our situation is ie, carers of early onset dementia sufferers. I raise the question as i note relatively small numbers of threads on the younger people section compared to the main body of the forum. It worries me to see that increasingly the organisation growing in terms of presence in the field of dementia provision is AGE UK, and as this is set to continue who realistically is going to be interested in the more complex needs of the younger sufferer? Having looked at the Alzheimers Society factsheets they estimate over 16000 sufferers under the age of 65, but think this could be an underestimate by a factor of 3. Taking the population of Britain at 60 million that suggests 0.026% of the population are early onset sufferers. I doubt we'll get much support for our cause/problems in the corridors of Whitehall or many other places for that matter. Early onset support is patchy across the Country, funding is harder to attain, and our local Alzheimers Society "locality" is facing staff cutbacks/hours reductions etc. As the minority i think we could be facing a bleak future. Comments/Views?
 

jan.s

Registered User
Sep 20, 2011
7,353
0
72
Hi Big Geordie
I started posting on the 'Younger' section, but for some reason ended up on the other section. My husband is EOD, but I found so many similarities in behaviour issues that I didn't feel it made much difference.
I do acknowledge there are differences though. I would like to see care homes specifically for Early Onset, as it is becoming more frequently diagnosed. My husband is going into a home for over 65s, but I would much rather he were going somewhere where there are younger people. This was an issue raised by the CH.

Jan
 

sunray

Registered User
Sep 21, 2008
1,486
0
East Coast of Australia
same kind of feeling

I felt the same when my husband had major strokes at 57 and I had to leave work to look after him. Everyone told me he was not old enough to have strokes, or that surely at his age he would beat it. My friends were not much help, most of them just stopped contacting.

I found my support base among the 80 year olds who had nursed husbands with something similar. In spite of our age differences I found all the situations I faced they had faced too.

Eventually we found a support group for younger stroke survivors. Maybe you could find one for younger dementia sufferers and their caregivers, or form one yourself.

Sue.
 

LauraKx

Registered User
Dec 16, 2011
32
0
31
Leicestershire
Hi dad,

I agree with you, I think its poor that there is not much to offer for those 'few' including mam. I have not found one person either on here who is the same age as either me or mum. Hopefully something will change so the future is not so bleak. Hope you are both okay, ill text you later xxx
 

Maggy79

Registered User
I agree.

Hi big Geordie

I am quite new to this site and I am making all sorts of errors, so please bear with me. We live in Melbourne my hb is 62 and there is little understanding of his condition, and no services tailored to his needs. He had to be hospitalised a few months ago and he was placed in an aged psychiatric ward. One day they had a sing song and asked him if he wanted to request a song and he replied anything by the rolling stones will be good.

Hopefully by people like yourself, myself and others speaking out on behalf of our loved ones we will change the system. Love marg
 

eskimojo

Registered User
Nov 11, 2011
107
0
Crewe UK
i agree with you i am 43 years old and was diagnosed with early on set late last year...there a very limited services for younger people it is mostly aimed at the older population....just acessing things like exercise programs suitible for younger people with limited mobility is none exsistant......the only things on offer here for me are art classes which a) i have never been able to do as i have the talent of a flea
b)i have no intrest in
lucky enough i have a fantasic family and the few friends i still have are brilliant with me
and i have my pet dogs to keep me going
jo xx
 

mockingbird59

Registered User
Mar 8, 2012
10
0
Cheshire
Recent diagnosis

My husband has been diagnosed with PCA just a few weeks ago. We are still trying to come to terms with it - he is only 53. There appears to be nothing in the way of local support groups for younger people. We live in the north west of England. Has anyone any suggestions?
I've just been trawling through this site and came across this thread - there appears to be nothing out there for younger, physically fit PCA sufferers and I'm conscious that all my husband's friends work during the week - something he is no longer able to do. He enjoys the stimulation of discussion even if it can sometimes take him a little time to find the right word or equivalent. My company should not be all that is open to him during the week.
We have wonderful friends nearby, but as I said they are mostly working during the week. Perhaps I'm trying to run before we can walk. There seems to be so much to think about....
 

KatherineW

Registered User
Oct 2, 2007
12,654
0
London
Hi Big Geordie

I was saddened to read your post.

As you say, we don’t currently have particularly accurate figures for the number of people in the UK who are under the age of 65 and have dementia, hence the rather rough estimate that you’ve mentioned.

(Members may be interested in this page on our main website, about demography and dementia in general).

You’re also right when you say that support across the UK for younger people with dementia and their carers is patchy. :( It sounds like you’re in touch with your local Alzheimer’s Society service; I think the Newcastle service runs a group for younger people with dementia, although whether that’s accessible or indeed appropriate for you and your wife, I don’t know.

Re. the amount of posts in the ‘Younger people with dementia’ forum. There may be a number of reasons for this, but I suspect the main one is that quite a few TP members living with early onset dementia end up posting in other sections of the forum, as Jan s has. Possibly this is because areas like the main Support forum tend to be the busiest, and possibly it’s because, as Jan said, sometimes an issue may not relate specifically to the person with dementia’s age.

That said, I do appreciate that it must be dispiriting to see fewer posts in this forum, and I just wanted to say that if you think there is more we can do on TP to support and include younger people with dementia, please do let me know - we’re always open to new ideas.

In the meantime though, please do keep posting. :)

Best wishes,
 

TinaT

Registered User
Sep 27, 2006
7,097
0
Costa Blanca Spain
I first used Talking point several years ago. I was doubtful that I could gain support from this site as my husband hadn't got Alzheimers but had dementia with parkinson's disease and also he was early onset when most posts seemed to be related to elderly alzheimer disease.

Regardless of the above facts I did get support in my own particular circumstances if I asked for help. As I say this was many years ago now and over the last few years my husband's condition has deteriorated to the point where it is irrelevant that he suffered from early onset of dementia at a younger age than others.

I do remember feeling that I was in a very different position to most of the posters here on TP but asd I say, as the disease has progressed over the last 10 years , his much younger age hasn't seemed to matter as much.

I remember once being in the difficult position of needing emergency respite care as I'd been admitted as an emergency to hospital. There was no secure residential accommodation avaialable in my area because all such accommodation was only licenced to take people over the age of 65. When I recovered I made a big fuss about this with the Director of Social Services, my local MP etc and finally got the registration of residential care rules changed so that younger onset dementia sufferers could get respite care.

I remember feeling very much a 'pioneer' for young onset sufferers as there was very little available for this younger age group and many times I just had to accept that we would be going to groups where the majority of carers and sufferers were our parent's age.

At least Talking Point did make some space on the forum for early onset. I'm afraid that things haven't really changed that much when we consider what is available in our local areas for early onset sufferers and carers.

xxTinaT
 

roseash

Registered User
Sep 10, 2010
26
0
Woolsery, N Devon
Hi dad,

I agree with you, I think its poor that there is not much to offer for those 'few' including mam. I have not found one person either on here who is the same age as either me or mum. Hopefully something will change so the future is not so bleak. Hope you are both okay, ill text you later xxx

Hey Laura, How old are you and your mum?. I have also found no one on here of similar age to me and my husband, But fortunately I have made a great friend who is older and wiser:D,and we meet eachother for support and to let off steam

Best wishes
 

LauraKx

Registered User
Dec 16, 2011
32
0
31
Leicestershire
Hey Laura, How old are you and your mum?. I have also found no one on here of similar age to me and my husband, But fortunately I have made a great friend who is older and wiser:D,and we meet eachother for support and to let off steam

Best wishes

Hey RoseAsh, I am 19, and my mum was 49 when diagnosed and she is 50 now :) Aw that must be very comforting. I have Spoke to a lovely girl who is in her early 20s which has been brilliant to have a little cry lol, I do love the support of the older people who have been very supporting towards my dad and I too. I'm glad you have somebody to.

All my love xx
 

roseash

Registered User
Sep 10, 2010
26
0
Woolsery, N Devon
So pleased you have managed to find someone your own age to talk to, your round about the same age as my eldest 3 children, 20,18,17 ,they wouldn't dream of coming on here, they think its full of old people caring for even older people :eek:
So sad to hear about your mums diagnosis at such a young age, My hubby was diagnosed with EOA 18mths ago at 42, but we will all get through, even when it is hard with love and support from our friends and family:)

love to you and your family XX
 

Big Geordie

Registered User
Feb 6, 2012
73
0
North Tyneside
I would like to thank everyone for their responses and interest in this topic and their support for me and LauraKx, who most of you will realise now is related to me, (daughter). My ongoing gripes/issues however remain; many healthcare professionals are slow to recognise that EOD exists and when they do the services that they/local authorities/PCT's etc offer vary hugely by both region and country, an acknowledgement of our Australian friends plight as well. I visit our GP surgery regularly and find huge displays about Heart disease, cancer, stress, sexually transmitted diseases, blood pressure, obesity, diabetes etc etc. but little if anything about dementia, and this is the GP who took the possibility of EOD seriously. I will always wonder if things would have been different for us if our first GP surgery had considered EOD a possible problem over 5 years ago instead of the well trodden route of; Depression, menopausal, hormonal, lifestyle, drink, thyroid, laziness. Leading to well known cures inc Countless blood tests, one hysterectomy, blind faith in "its the change..it will pass" and hundreds of its "nothing to worry about" and the best one!.... "try sudoku". Fortunately with the help of two East Midlands Constabularies (who found my wife when she got lost) a Junior doctor in A+E at large hospital in East Midlands who recognised the overdose of a prescribed drug and spent 5mins pulling the whole story together and pointed us in the direction of dementia. Once we had an acceptance of the possibility it took just 6 months to get a diagnosis and a further month to start getting the support my wife needed. My conclusion more emphasis needs to be placed on awareness of dementia as an illness and even more emphasis that it can effect all age groups not just those who are 65+ years of age. Thanks again for your views and support. Good fortune to you all and God bless! Big Geordie
 

wjoanne918

Registered User
Feb 25, 2012
47
0
South Wales, UK
Big Geordie,

I wish my dad would come on here and talk to you, my Dad reads the posts but hasnt joined, you are both very similar and both in the same position, (unfortunatley) my mam has EOD, she is 58 now and we have struggled and are still struggling with getting support from anywhere. We do have a fab CPN who does her best with limited resources and our local ALZ has a befriending service that helps.
I get so peeved that all publicity for ALZ shows old people, the charity / cause gets so little funding or publicity I just wish they would highlight EOD now and again it would help people to understand. The amount of times people look at my mum like she's from another planet just because she says the wrong words, in the wrong context, too loud in the wrong place lol or she talks to children including picking them up, i have often considered putting a sign on my mum saying "i'm not a weirdo I have alzheimers" if she was old people would say "oh love her" and that'll be it, but they look at her as if she has two heads and it hurts me.
Sorry I've rambled a little, lots of love Jo x
 

polly1

Registered User
Dec 8, 2011
307
0
Hampshire
My husband has been diagnosed with PCA just a few weeks ago. We are still trying to come to terms with it - he is only 53. There appears to be nothing in the way of local support groups for younger people. We live in the north west of England. Has anyone any suggestions?
I've just been trawling through this site and came across this thread - there appears to be nothing out there for younger, physically fit PCA sufferers and I'm conscious that all my husband's friends work during the week - something he is no longer able to do. He enjoys the stimulation of discussion even if it can sometimes take him a little time to find the right word or equivalent. My company should not be all that is open to him during the week.
We have wonderful friends nearby, but as I said they are mostly working during the week. Perhaps I'm trying to run before we can walk. There seems to be so much to think about....

Hello Mockingbird59 So sorry you have had to find this site.
My husband was diagnosed with PCA in November last year, aged 57. Like you we were shell shocked and our lives have been turned upside down. He has had to give up work and driving, which had been his life. I work part time and our 2 adult children live at home so usually there is someone at home with him. He is up and down and we are still battling to get the drug Aricept. We are awaiting an appointment at St George's Tooting, and hopefully we will know more after that. We have joined the PCA support group (www.pcasupport.ucl.ac.uk) and they have been super. Plans are underway to try and establish regional support groups, because up until now, the meetings are only held in London, although there is one starting up in Worthing next month. It might be worth your while getting in touch with Jill Walton through the aforementioned web site as she may know of any possible support network in your neck of the woods.
If not, could you both travel to London for 22nd June when the next meeting is due to take place? Maybe make a break for you both, finances permitting!
Andy and I attended our first meeting in Feb. It was comforting to meet people in our situation. If you ever need a chat, please post on here as I am sure there will be others along to oblige!
Best wishes Maggie
 
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