1. mikeyboy

    mikeyboy New member

    Jul 29, 2018
    7
    After almost a year caring for my brother he has finally got a diagnosis. He has early onset familial Alzheimer's. He is 40 years old. My wife and I are currently trying to find out what help and support is available both for my brother living with dementia and for us as carers. This is proving problematic because of the young age. Help and advice seems to be mostly aimed at older people. I would be interested to know if anyone else is in this position and experiencing similar difficulties.
     
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,384
    Kent
    It`s tragic enough for young people to be diagnosed with dementia, it doesn`t help that they draw an even shorter straw when they need support.

    All I can suggest is to try this link to see if there is any support in your brother`s area @mikeyboy. I do hope so.

    https://www.alzheimers.org.uk/get-support
     
  3. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,935
    Yorkshire
  4. Abbey82

    Abbey82 Registered User

    Jun 12, 2018
    35
    Its a minefield, we were in this situation almost exactly a year ago, although myDad was 59 and not as young as your Brother. However, its the same scenario, the people we have had battle with all because it is perceived as an 'older/senior' persons disease. There is perhaps some help/advice I can provide to you, if you want to drop me a message I can give you an email, or you can just fire away with questions and i'l try to help as much as possible. It sounds like you are doing a great care job already too.
     
  5. Sarahdun

    Sarahdun Registered User

    May 18, 2014
    392
    Didn't find it easy but did find some information from local carer's centre and also from the local charity contracted to provide one-to-one support. Alz Soc should be able to tell you who your local advisors are. The most useful information were the contact details of a specialist employment agency through which I could employ carers myself directly (initially companions to go walking with pwd etc). As I was the employer I could pay a decent wage and it was still much cheaper for me than paying the overheads that care companies charge. The agency charged a small fee and in return calculated the payroll and drew up contracts so everything was legal and everyone was safe. I used pwd's PIP to cover costs and continued to work (eventually part time) myself. We were self-funding. Your brother may get SS help. The employment agency provided lots of carers for younger people with LA allowances.
     
  6. Rich PCA Carer

    Rich PCA Carer Registered User

    Another useful starting point is Rare Dementia Support, http://www.raredementiasupport.org/, since familial Alzheimer’s is not common. Look for information about FAD.

    If your brother is not independently wealthy, he should be entitled to ESA, provided they agree that he is unable to work.

    My wife is 65 and has PCA and as care homes go, this is very young, so we are looking to keep her at home as long as possible. We don’t need carers yet, she was diagnosed 4 years ago, but that time will be upon us all too soon.
     

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