Benefits and dementia

unfortunately my DH 49 is about to get a dementia diagnosis, just working out which type, likely FTD. He has always worked and up until summer was managing but this is no longer possible. Job centre advised applying for esa which we did on July 16 and been sending in fit notes. Now we’re are further down the line with understanding cause and getting diagnosis at end of this month. I am concerned as we’ve received no assessment date and we now understand more and that he will continue to deteriorate. He already has since July. The consultant has advised applying for pip too and has already signed form for reduced council tax. I’m also in midst of getting POA.

my questions are,

have i I missed anything?

is it normal in these times to hear nothing about esa for 17 weeks?

should i have waited for diagnosis although obviously difficulties have been present for a while?

does a dementia diagnosis mean support group for esa?

sorry if these are very naive questions I’ve never applied for benefits and at 40 didn’t expect having to get POA for DH.

any help/support/advise welcome. Thanks 


  • McKneff
    McKneff Posts: 38,833 Forumite
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    Please ring your council and ask to speak to a benefits assessor. They are a great help and will do everything to get all that you are entitled to. They are really on your side. 
    Your hubby may be entitled to a blue badge and she will possibly apply on your behalf.good luck
    make the most of it, we are only here for the weekend.
    and we will never, ever return.
  • poppy12345
    poppy12345 Posts: 18,083 Forumite
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    edited 9 November 2021 at 8:13PM
    For PIP and ESA a diagnosis is not needed. Neither of those are about a diagnosis, it's how those conditions affect you, though they are both different benefits with different criteria.
    Have you used a benefits calculator to check entitlement to Universal Credit? Do be aware that if you claim atx credits, a claim for UC will end the tax credits. If you have savings/capital of more than £16,000 you're excluded from claiming. As it's a means tested benefit you will need to claim as a couple.
    If you claim UC the ESA will be deducted in full from any UC entitlement.
    He should report his health condition if you claim UC and send in fit notes but as he's claiming ESA there will only be 1 work capability assessment for both.
    PIP here's some links. There's huge backlogs (estimated 10 months from start to finsih) for this so the sooner a claim is started the better.
    For the benefit claims you can become his appointee, details here. POA isn't needed for any benefit claim.

  • Qtipps44
    Qtipps44 Posts: 88 Forumite
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    Thank you both. 

    We we are not eligible for UC as I have increased my hours to full time as I can for now. The calculators I’ve used point to pip and esa. 

    I didnt know about a benefits assessor. That sounds like a good option. I also didn’t know about becoming an appointee. Tbh most people on phone have quickly agreed to speak with me but it may be less stressful if confirming with DH wasn’t required first.

    the consultant has signed the council tax exemption form but I’m not sure if we can apply while just on the assessment for esa? I suppose every council is different.

    thanks again
  • Savvy_Sue
    Savvy_Sue Posts: 46,109 Forumite
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    I can't think why you shouldn't apply now if the consultant has signed the CT exemption form. I'd do it now.

    Also is there a support group for this condition? 
    Signature removed for peace of mind
  • poppy12345
    poppy12345 Posts: 18,083 Forumite
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    If you're not entitled to UC then speaking to a benefits adviser isn't going to help. Help with filling out the PIP form will be a good idea. As well as the work capability assessment form, if you haven't already filled that out and returned it. If you haven't then have a look at the descriptors for the Support Group. He will need to be placed into this group otherwise his ESA payments will stop after 1 year.
    When placed into the Support Group money continues for as long as you remain in that group and is increased to £114.10 per week from the 14th week of his claim.

  • Qtipps44
    Thanks. I think given the back log I might just go for it. Council can only say no and surely consultants signature and support means something. 

    Im getting counselling and meeting a dementia advisor this week. She may support with benefit advice. I’ve had some conflicting advice about waiting for diagnosis but in reality it won’t change the difficulties we’ve been having for a while and only now coming to terms with. Also had some unhelpful aw no sorry thats for people over 65 comments. Particularly difficult to hear.

    consultant, go and community nurse have been great support and children are getting young carer support in school.

    Thank you.
  • Ms_Chocaholic
    Ms_Chocaholic Posts: 12,641 Forumite
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    How are you getting on with LPA - are you doing it yourself? It's pretty easy to do yourself just make sure you get the signatures in the right order.

    Just one thing people haven't mentioned and I'm not up on benefits at all - can OP's partner claim attendance allowance?

    Do you own your own home? If so can anyone advise whether it would be worthwhile changing the property ownership to Tenants in Common and getting a will drawn up so partner leaves half of property to children (if applicable).
    Thrifty Till 50 Then Spend Till the End
    You can please some of the people some of the time, all of the people some of the time, some of the people all of the time but you can never please all of the people all of the time
  • Spoonie_Turtle
    Just one thing people haven't mentioned and I'm not up on benefits at all - can OP's partner claim attendance allowance?
    No, that's only for over pension age.  The working age disability benefit is PIP.

    OP, I haven't seen your first question about ESA directly answered so no it's not unusual to have had no assessment date from ESA at this point.  Have you had the form to fill in?  If things have got worse between filling in the form and whenever he is eventually assessed, make sure to explicitly tell them that (even in writing) so that they have all the information to make the right decision at the time of assessment.  It will also be easier to have everything in writing if you then have to fight for the correct decision (hopefully you won't have to, but it's good to be prepared).
  • Qtipps44
    Yes. I’ve filled in the esa form but probably not with as much care and attention as I should have as we weren’t as clear around difficulties in July as we are now. I called today to ask where to send updated information and I’ve now got an email for this.i hope to have diagnosis letter and OT assessments to provide as evidence too shortly.

    i thought about doing POA myself but have so much going on took money from savings to pay solicitor to do it. Almost has always been in my name only anyway and financial affairs are simple for DH.

    thankyou for all suggestions and advice. It’s been such a shock and so much to deal with. Hopefully when some of these things are in place we can get on with making the best of our time.

  • MrsBrooks13
    I might have missed it in the previous posts but you may be able to claim Carers Allowance if DH is awarded PIP. It’s £67.60 per week and is not income or savings related. It can be backdated by 3 months too if eligible.
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