1. Expert Q&A: Protecting a person with dementia from financial abuse - Weds 26 June, 3:30-4:30 pm

    Financial abuse can have serious consequences for a person with dementia. Find out how to protect a person with dementia from financial abuse.

    Sam, our Knowledge Officer (Legal and Welfare Rights) is our expert on this topic. She will be here to answer your questions on Wednesday 26 June between 3:30 - 4:30 pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

  1. keane

    keane Registered User

    Sep 9, 2005
    40
    Hi there

    Not posted for a while but am always reading the great advice on here.

    Just really need to vent about social services. We've been waiting since January for an inititial assessment for mum so that she can be have one day at an Age Concern day centre which we will have to pay for. I can't believe how hard this is to achieve. Apparently she can't get referred by her community mental health nurse because her needs aren't 'complex' enough so we need to go through social services. Can anyone define what 'complex' means??? She has early onset Alzheimer's - their needs are pretty complex! Social services are a complete nightmare - never phone when they say they will, are protected by a customer service team that as far as I can see does nothing. I can't even get a name of someone that I can speak to. Feel like I am battling and battling to get mum into this centre and give my dad some respite. Things are hard enough as it is for sufferers and carers. I have taken on the role of dealing with all of this as my dad has enough on his plate. I have been told to pretend that we are at breaking point (isn't that the norm for us carers most of the time - we just deal with it..)

    The system is so wrong - where's the joined up thinking and solutions from social services?? I don't want to get into just having a go at social services all the time - I know they are underfunded and overworked etc. but it's so frustrating when the solution is to just let other professionals do the referring if they can't. Apparently that used to be the case so why the change?? Also there seems to be a total lack of understanding about early onset Alzheimer's especially because the physical deteriation that is often there with older patients isn't with younger ones and it is this very point that makes caring for them even more difficult.
    Is there anything constructive I can do to change the system?? Anyone got advice? :)

    xxx
     
  2. EmJ

    EmJ Registered User

    Sep 26, 2007
    230
    Scotland
    Hi Keane

    I think many of us who experience difficulties with the SS wish there was a way we could sort it out! It is concerning that so many people are experiencing problems getting even the most basic care/respite.

    Try doing things in writing. That may make you harder to ignore. Give a copy of your difficulties to the GP too.

    A lot of the time you feel like you are just being passed from one person to the next. No one seems to want to deal with it!!

    Some one has to look at the system and start making some changes because as more people are affected by this disease more people are going to need help...

    Good luck. Hope things improve.

    EmJ:)
     
  3. Clive

    Clive Registered User

    Nov 7, 2004
    716
    Hi Keane

    You are not alone in being very frustrated about how inefficient and poor the system is to help those with AD. You must never think it is something you are doing wrong as it happens to most of us. (My experience with the Community Mental Nurse was that he stopped coming because he said mum’s AD had got TOO BAD).

    I don’t know how you change the system in the short term to help your mum and dad. I do think that you get better attention if you write down what you want before you ring these people so that you have a prompt in front of yourself. Just do one thing in each phone call otherwise you confuse them. You must find out the persons name before you tell them your concern, and keep referring to them by their name. And you must confirm every request and promise in writing.

    Having said all the above I was not very successful with Social Services. The best “day centre” type place mum went to was found for me by the Alzheimer’s Society, and we just paid for every thing.

    In the longer term the only people who can change the priorities are the local councillors and the MPs (who both have surgeries where you can go to see them). These people will only act when enough people have stood in front of them and complained. Unfortunately people who Care have little time to do this and so nothing gets done.

    Best wishes

    Clive
     
  4. Kate P

    Kate P Registered User

    Jul 6, 2007
    565
    Merseyside
    Hello Keane,

    We too have had and no doubt will continue to have problems with SS. I know a lot depends on the area you live in but I think that early on-set causes a whole host of other issues.

    I quite agree with Clive that I think the best way to get things moving is to go to the MP - they do respond if you write to them as well but obviously it is faster to go to one of their surgeries if you can. Most government departments have targets in place that they have to respond to MP enquiries/complaints within quiter a short amount of time (7 or 10 days I think) so it could be a good way to get things at least off the ground.

    The problem we find is that the social worker, the CPN and the carers all treat mum as an elderly AZ patient because that's what they're familiar with but that isn't what she is and so they can't understand my dad's needs and so he doesn't get the help. They continue to tell us that she's agressive (which believe me is not news to us!) but then have no suggestions or solutions on how to deal with it.
     
  5. Grommit

    Grommit Registered User

    Apr 26, 2006
    2,127
    Doncaster
    Believe me Keane. I know how you feel.

    I have been trying since december 2007 to get Diect Payments for carers.

    Still have not got it despite having written to MP's. Councillors and Local Government Ombudsman.

    Keep plugging away. Something will happen in the end.
     
  6. ChrisH

    ChrisH Registered User

    Apr 16, 2008
    281
    Devon, England
    Hi Keane and everyone else
    There really does seem to be some kind of postcode lottery regarding SS and dementia. My mum lives in Worcestershire and since I first wrote to her GP last summer I've been amazed at the care she's been given with very little effort on my part. I was with her earlier this week (I live in Devon so it's a bit of a trek) and her OT made a special visit along with her support worker because she knew I'd be there. I happened to mention I wouldn't be able to make it to mum's next consultant's appointment as it was on a Monday and that's one of my clinic days (I'm a chiropodist) and it's difficult for me to re-arrange my patients. I said Fridays would be better. Today (3 days later!!) I received a copy of the letter they sent to mum to say her appointment has been changed to the Friday!!
    They are also trying to set up a group to help with coping strategies for remembering and have asked mum if she'd liked to go. They are waiting till they get enough people they think will benefit and then it will go ahead as a 6 week course.
    I am so sorry that you are having such a hard time and I feel quite guilty that my mum is getting so much help when I read posts like yours. The same services should be available to all and not just depend on whether you're lucky enough to live in an area where they have 'joined up' care. I should perhaps add that my mum is 82 so not exactly 'early onset', but why should that make a difference to the level of care?
    Best wishes
    Chris
     
  7. chip

    chip Registered User

    Jul 19, 2005
    400
    Scotland
    Having a husband with early onset and what i've been though the past years trying to get help. It is obvious that early onset is not recognised. They also tend to deteriorate rapid and Social Services don't take that into consideration, nore do the NHS. They also tend to be more mobile and stronger. It would help if there was places for them. Getting ILF also takes an age (over 3 months so it was too late for my husband) Social Services shouldnt wait till the deterioration happens before doing something.At meetings the Social Worker we had was totally different that what she was like if she came to the house.So two faced. I wish now i had spoken up at these meetings.
     

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