1. Greenman

    Greenman Registered User

    Sep 29, 2016
    14
    East Midlands
    Does anyone else feel that the needs of people with working age dementia are not acknowledged?

    When Dementia makes the news it seems to focus on the needs of the elderly and there is rarely any mention of younger people. A prime example is the news this week that Labour has announced plans to fund Care for older people - an announcement welcomed by Alzheimer’s Society CEO, Jeremy Hughes. This would have been an excellent opportunity for Mr Hughes to remind those in power that there are younger people with dementia who need help too, but no, as usual the Alzheimer's society completely forgets about those with working age dementia.

    I sympathise with anyone who is suffering from this terrible disease, but it is far harder for young people. Beyond the age of 65 a partner has plenty of time to be a carer and has a pension to provide a financial cushion. But, when you are middle aged and are still trying to build a pension fund how are you suddenly expected to give up your income and live off a pittance. Why is no one fighting our corner?

    The Alzheimer’s Society adverts on TV give the impression, to the uninitiated, that Alzheimer’s is all about little old ladies who become a bit forgetful. Never any mention of young people losing their jobs, their spouse struggling to keep their job and do the caring role, complete changes in personality, becoming incontinent. The Macmillan TV advert paints a clear picture about how devastating a diagnosis of cancer can be, I don’t think the Alzheimer’s ad does the same.

    Isn’t it time the Alzheimer’s Society had a Working Age Dementia Champion helping ensure we have a voice when politicians start debating plans to overhaul the care system.
     
  2. Life

    Life Registered User

    Oct 12, 2017
    30
    I agree.

    Only today I had a paid carer express strong surprise/ disapproval that I am not at home providing full-time care for my OH. It completely escaped him that I have a family to support.
    Also in my area the local carers group is for carer's of older relatives. ( for that read parents). Even the Social Worker can not get her head around the very specific challenges that the combination of LBD and having minor children presents.
     
  3. Alzheimer's Society

    Alzheimer's Society Volunteer Moderator

    Hi @Greenman,

    We’re sorry to hear that you feel the needs of younger people with dementia aren’t acknowledged. We’ve put together a summary of what Alzheimer’s Society currently offers for people affected by young-onset dementia, and some information about the people who work with us to champion younger people with dementia and ensure their voices are heard.

    Our publications team have produced the below factsheets that focus on young-onset dementia:
    As you’re aware, Dementia Talking Point also has it’s own forum for younger people with dementia and their carers. This forum is specifically for people with dementia under the age of 65 and their carers, families and friends.

    We also have a list of additional resources and other helpful organisations for people affected by young-onset dementia on our website, which you can view here: https://www.alzheimers.org.uk/about-dementia/types-dementia/young-onset-dementia-more-resources

    Alzheimer’s Society’s magazine, Dementia Together, has an article highlighting how our Side by Side service helped Will, who was diagnosed with Alzheimer’s disease in his mid 50’s: https://www.alzheimers.org.uk/get-s...ine/man-young-onset-dementia-active-lifestyle

    Wendy Mitchell was diagnosed with young-onset Alzheimer’s disease at 58 years old and is now an Alzheimer’s Society ambassador. You can read about her story and the work she does for Alzheimer’s Society here: https://www.alzheimers.org.uk/blog/wendy-mitchell-story-part-one

    Patrick is living with young-onset dementia and takes part in a wide range of activities with Alzheimer’s Society. You can read about Patrick and the work he does with the organisation here: https://www.alzheimers.org.uk/get-involved/dementia-voice/patricks-story

    If you’d like to get involved with Alzheimer’s Society like Patrick and champion younger people with dementia, please fill in the below form so we can get in touch with you:
    https://www.alzheimers.org.uk/form/influence-our-work

    We’re sure you’re aware that not everyone over 65 has easy access to funds to care for their loved ones. Here at Alzheimer's Society we would like to see more funding available to support all people affected by dementia, whatever their age.

    We really the above information is helpful for you.

    Best wishes,

    Alzheimer’s Society
     
  4. DennyD

    DennyD Registered User

    I do agree with you. More and more we learn about people being diagnosed st a pre retirement age and yet support for both pwd and carers seems to be focussed on those in retirement. I am a carer to my husband and after having been on sick leave due to burnout have made the decision to hand in my resignation on Monday. I do so with the view to give my husband the care and support he needs. I am also fully aware of the enormous uncertainty we face.
     
  5. Palerider

    Palerider Registered User

    Aug 9, 2015
    972
    Male
    North West
    Its interesting this has been raised. I recently posted a younger persons dementia flyer on my FB and not one of my friends acknowledged it and I am not sure why. I think for some of my colleagues and friends it was too close to home if all should fail in their lives. I don't know what the answer is, but what is clear this is and will be a growing problem as more and more people below retirement age become diagnosed or show signs.
     
  6. Teddy1960

    Teddy1960 Registered User

    Oct 24, 2018
    50
    I totally feel very passionate about this. My husband is 58 and I still work full time. My family have flown the nest but I really enjoy my job it's my respite. I constantly get comments from people who seem to think they can tell me how to run my life.

    Comments like dont you worry about him are very common .
     
  7. Normaleila

    Normaleila Registered User

    Jun 4, 2016
    693
    I agree that younger PWDs aren't mentioned much in the media. But as it happens there was a feature in the Guardian about a woman who died of a rare form of dementia at 42. Unbearably sad.
     
  8. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,966
    sometimes you wish people didn’t say anything- & this is one of them!
    The hurt a comment can make when another doesn’t understand the reality of the situation!!
    How anyone is supposed to live on the carers allowances? Especially as care Homes charge £800 a week upwards to almost £2k !!! A living wage for carers would be sensible but then £800 a week for the 24/7 care given by a spouse or relative with no breaks or clocking off wouldn’t be allowed in a work place!

    Why should having a relative / partner being ill mean you have to give up work & all hope of a pension etc, a standard of life, options, family time??

    it’s about time the whole system was overhauled & reassessment of real situations taken onboard!
     
  9. Fullticket

    Fullticket Registered User

    Apr 19, 2016
    468
    Chard, Somerset
    I work with a carers group and it is almost impossible to connect with working age carers or younger people who are carers except on a very superficial level. We have a good group of retirees but the pressures just of getting through a day when you are working/studying/caring/running a house means that we are just not getting through to a lot of these people. Obviously we don't 'blame' them as they are simply trying to get through their day (and working carers need the income) but their emotional and practical needs are exactly the same and we know that they are missing some vital information about, for instance, wills, Care Programme Approach, benefits, etc.
     
  10. Helly68

    Helly68 Registered User

    Mar 12, 2018
    484
    I think most people would rather not think about dementia at all, sadly, regardless of the age of the PWD or carer.
    I work, and though my Mum is in a care home, visit regularly and do all her admin/decision making. I have had comments form colleagues about looking after elderly relatives at home. So insensitive - my disability means I could never have physically cared for her. I feel guilty enough about this, I don't need anyone else's comments.
    In terms of working carers (I can't comment on younger PWD) the problem for me is that unless we have a crisis or very pressing need, I don't have time to access local support services, like the Carers Centre and my father is of a generation where this kind of support isn't well understood - he is very independent.
    I am not sure what the answer is but TP is a lifeline. I don't post a lot but gain from reading the shared experiences of others.
     
  11. BazArcher

    BazArcher Registered User

    Feb 13, 2016
    26
    Lakenheath, Suffolk
    Sadly I'm one of those who are struggling to come to grips with having to give up work and survive on £66 carers allowance, thankfully my OH the PWD has a workplace pension which we managed to get paying out otherwise the mortgage wouldn't be paid,
    This is now my 4th year in what I call retirement and I've just passed me 55 birthday this awful disease has sadly ripped me OH away from me and was diagnosed as she was 48. The main bit that really sticks in your throat is seeing people complain about how they're working and receiving benefits but its still not enough to survive on. I'm not looking forwards to finding a care home as she will be under 60 by the time the stress of looking after her means I have to put her in one.
    last bit is the usual condescending comments from family and friends, you all know the sort try this try that, sorry but you only see her for an hour a year at xmas or maybe once a month in the high street, like you know whats right from such small interaction .........sorry for that last bit but its the one that tends to strike home the most.
    I wouldn't wish this disease on anyone but sadly its here and will be for some time so it would be nice just to see issues raised for the whole lot rather than one part of it.

    Baz
     
  12. Splashing About

    Splashing About Registered User

    Oct 20, 2019
    187
    I empathise because I struggle to juggle caring for two people who I don’t live with, with work and a family. How you would manage if it was your partner I can’t imagine. There is an assumption that family will be able to provide 24 hr care whatever the age of the person with dementia. Whether this is a frail spouse in their 80s or an overworked younger person juggling work and children...it’s impossible and a major stress. Throw in the feeling that you don’t count or get recognised and it must feel much worse again.
     
  13. Donkeyshere

    Donkeyshere Registered User

    May 25, 2016
    324
    channel islands
    I attend the local carers group but appreciate it when you say that the carers are for older relatives, I am the youngest myself of the at the age of 51 years young in our group and sometimes feel a bit left out as I still working, caring and the only one looking after a non-blood relative, the majority of the group are caring for their OH's and retired. So whilst I am not the carer of anyone with younger onset which I agree is not taken into account as it is with older onset, younger carers in general face similar issues in juggling it all.
     
  14. northumbrian_k

    northumbrian_k Registered User

    Mar 2, 2017
    873
    Male
    Newcastle
    Some of your points are well made @Greenman although I would hesitate to say that caring for a person when one is older is necessarily 'easier'. As a younger (still working age) carer of an older partner I can appreciate that hearing dementia described as something associated with 'old age' is not helpful. It isn't and should not be portrayed that way.

    I have been retired for over 5 years but am not yet 65 so not yet old. I was in the fortunate position of being able to take early retirement with a good pension when it was clear that my wife (14+ years older than me) could no longer manage on her own. I gave up a fairly modest career, a job I liked and an outside chance of a significant promotion to become a full time carer. It is true that as a retiree I had plenty of time to devote to caring for my wife but I was not prepared for how all-consuming this became. Those who are still managing to both work and care for someone with dementia have my admiration.

    Now that my wife is in full time residential care I still have plenty of time. I never missed my work or regretted giving it up to care for my wife. But, beyond visiting her several times a week, I am struggling to fill the hours and days in any meaningful way.
     
  15. Mousehill

    Mousehill Registered User

    Nov 28, 2018
    21
    I agree that no enough is out there in the public domain about dementia, especially for younger people. There's so much that the Alzheimer's Society provide, but in all honesty, until I took on the role of caring for my mum after my dad passed away and her condition worsened, I was vaguely aware that there was an Alzheimer's Society and yes, I hate to admit it now, but I thought dementia was largely something old people got as a side-effect of being old: sometimes old people became deluded and very occasionally violent - but hey - we've got the NHS and the care system and all that stuff is waaaay in the future and might never happen - and anyway, most people affected by dementia just go a bit forgetful and spend their days having nice stuff organised for them by happy, smiley volunteers and specialist carers - right?!!!

    It's hard enough looking after an elderly parent (and we're in the same boat with DH's income covering utility bills and council tax and then groceries, car fuel and any extras come from our 66 pounds a week, as I have had to give up work and I'm trying to set something up on a freelance basis that I can fit around mum's care) I can only imagine what it's like being part of a younger couple, or a single younger person who is dealing with this. Yes, the information is 'there' but it isn't getting 'out there'.

    My biggest 'aaaaagggghhhhhh!' moment is when a few people suggest I have 'retired early' and when their son/ daughter / spouse left work, they had so much more free time to do lovely things like keep on top of the garden, build an extension, go on a cruise (yes - that was a coffee-spitting moment!) without any apparent awareness that I gave up work for a purpose, not for fun or because we could afford it.
     
  16. Cap'n Grimm

    Cap'n Grimm Registered User

    Feb 6, 2019
    15
    There is certainly a forgotten generation of both people with dementia and their careers. My mum is in her seventies but I’m not even out of my thirties. I’ve had to give up on a career just as I was reaching a point where i was becoming financially comfortable.

    The harsh reality is there is no support of any real value to me. I work part time a couple of days a week to ensure I don’t render myself unemployable in the future (try explaining a five year employment gap in an interview) and I earn slightly too much to qualify for careers allowance and because I saved my money like a good boy I have too much in savings anyway. It’s an absolute joke. I would literally be in a better position if I’d gone out every night and urinated all my money up against the wall.

    I’m sorry if this comes off as disrespectful towards the charities and organisations that do exists to help people but all they seem to do is point me towards fact sheets and other groups with other fact sheets round and round in circles and seriously, it don’t pay the bills, and that’s the real support I need.
     
  17. Mousehill

    Mousehill Registered User

    Nov 28, 2018
    21
    That just about sums it up! I've just got the opportunity to tender for a part-time consultancy role that in theory might be workable around mum, but in reality, it terms of what employers look for on a cv, a career break to care for someone with dementia isn't given the same (or anywhere near the same) understanding as a break for maternity leave or caring for someone with an illness that the majority of people recognise as terminal (because dementia is a terminal illness - it's just very few people acknowledge that)
     
  18. PJ

    PJ Registered User

    Jan 26, 2017
    341
    Female
    Bristol
    I can completely relate to this as I was diagnosed with bvFTD in 2018 when I was 51 & had to give up work, I then lost my driving licence. We rent a property & my husband still works but has dropped to a 4 day week so he can come to Active8 with me. He has had to draw on his private pension just to help us cope financially. There’s little to no understanding of what young onset does to a family. The media needs to spread more awareness.
     
  19. DennyD

    DennyD Registered User

    I appreciate the despair of having a gap on my CV as well. However when mentioning this to an adviser at CAB she said; think carefully about the role of a full time carer to your husband, you will have gained and developed many skills and abilities as well as gaining insight and knowledge of dealing with charities, support services and gov officials. I thought about this, and yes although she approached it quite clinically, she's right. I keep this in mind whenever I feel low when thinking about all I'm 'missing out on' having given up work.
     

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