1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

  1. kiwipipple

    kiwipipple Registered User

    Feb 1, 2015
    2
    #1 kiwipipple, Feb 1, 2015
    Last edited: Feb 1, 2015
    I am a Student Occupational Therapist in my final year of university. As part of my course I am required to design a service which will be of benefit to a population (and it may eventually be set up). I have chosen to design a service which would be of benefit younger people who have an onset of dementia. For example, a walk in service which provides a number of leisure activities and days out for families. I would love to hear about your experiences and what you feel would be a useful service to you and your family.

    Thank you :)
     
  2. Hair Twiddler

    Hair Twiddler Registered User

    Aug 14, 2012
    881
    Middle England
    Hi, I see that many have read your post but you have had no replies. For what it's worth here's my view....any service which would make my mum happy and allow me time with all of my family having quality time together would be fabulous but I am old and despondent. It will never happen - society is such that it all comes down to filthy lucre, of which there is none left for these sort of ideas.
    One Cynical Twiddler.:(
     
  3. malc

    malc Registered User

    a blinker removal tool and hearing aid for the government so they eventually have a clue that a woman of 40 years old can actually have alzheimer's so they can adjust there media coverage that always shows pictures of old people and there benefits system which also doesn't have a clue can be altered.i might sound cynical and bitter but i'm living in this hopeless situation everyday,we don't exist according to ad campaigns etc.
     
  4. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,973
    Suffolk
    Good idea Malc. How about one sufferer with dementia and a carer with their own serious illness? Carers are meant to be fit and capable, aren't they?
     
  5. LYN T

    LYN T Registered User

    Aug 30, 2012
    6,968
    Brixham Devon
    Well said Malc

    Lyn T XX
     
  6. malc

    malc Registered User

    spamar,i'd volunteer but would they listen to the bloke who's depressed with sleep apnea ,i only weigh 12 1/2 stone so they wouldn't believe that either,they'd be expecting a 20 stone bloke to turn up with a 70 year old woman,i'd hate to be contrary to the statistics they get fed.
    lyn t,thankyou
     
  7. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,973
    Suffolk
    Keep on at them, Malc. Never give up, stamp your feet and tell them it's happened and you can't cope. Actually I think I'm telling you so that I do it myself!
     
  8. john51

    john51 Registered User

    Apr 26, 2014
    289
    Male
    Dunstable, Bedfordshire
    Hiya

    It is easy to get depressed and jaded once you hear your diagnosis
    I think many that have replied to you are feeling low and unlistened to.

    An advocacy service to help people listen to us and not to focus above all else on dementia would be useful.

    For example, after I received my diagnosis vascular dementia), I was lead to beleive that staying fit might help me retain soem brain power. I decided to (re) join a gym.
    They were brilliant until they saw 'dementia' on the medical questionaire, at which point it was politely pointed out to me that they didn't think they would be able to deal with my needs.
    It took a lot of asking pleading, demanding and getting downright angry before I was accepted.
    If your service had someone who could be the go-between between the gym and myself that would be brilliant. On my good days, I can understand how scared they were of doing something wrong.

    Simply helping organisations to ensure that always have a dementia friend on duty would help loads.

    I suggested this to my optician after I had to leave the shop in confusion because the woman who was meant to be fitting my glasses hadnt got a clue how to help and totally confused me. The suggestion didnt go down too well.

    Good luck with the project

    John

     
  9. Sue J

    Sue J Registered User

    Dec 9, 2009
    8,041
    A brilliant suggestion John. Someone that can see that someone has a problem and has some understanding can diffuse difficult situations and also ensure that the sufferer gets what they need and doesn't leave frustrated and upset with no glasses then having to arrange it all again.
     
  10. kiwipipple

    kiwipipple Registered User

    Feb 1, 2015
    2
    Thank you for each of your replies. I agree with each of you and understand your feelings and frustrations, which is why I feel so strongly about this project. Malc has a very good point which I agree with completely. As a profession and on many of my previous placements I have been faced with the fact that budget cuts and staff shortages mean that the highest quality of care and meaningful services can not always be implemented. This makes me angry and the occupational therapy profession has been fighting to change this (An article has recently been published in the guardian about the importance of the occupational therapy profession in enabling people to live their lives the way they want to and assuring and promoting the independence of people in all aspects of their daily life). However last year a number of student projects were set up.
    1. A service for people with learning disabilities - they ran an allotment which grew various fruits and vegetables. These were then sold to the community and all the profit was put back into the service.
    2. A service for young people with mental health problems - a bar provided host to a DJ night where those with mental health problems would provide DJ sets. The sessions in preparation for these nights were taught and an NVQ awarded.
    3. One girl has recently set up an app for those with mental health issues to look at and find services in their local areas. The app provides information and support to the person and their families.
    So I believe that these services can be made happen.
    John thank you for your ideas, the advocacy service would be brilliant. As a dementia friend and carer I understand your frustration. There is little awareness in the current media about the condition and attitudes which need to be addressed.
     
  11. Stereochild

    Stereochild Registered User

    Feb 17, 2015
    5
    Greenwich/Deptford
    It sounds like a wonderful idea to me - but being "walk in" will limit where it can be effective.
    I am looking for some kind of group set up for an early onset dementia client, who is in his 50's and very mobile.
    A walking group could be included in your leisure activities!
    Problems with speech and concentration can also make activities very limited.
    Ageism seems to be working in reverse for people with early onset dementia, there are classes for people over 60 years in the local community.
     

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