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Does online support for carers work? We need your help

Discussion in 'I care for a person with dementia' started by HarrietD, Feb 4, 2016.

  1. HarrietD

    HarrietD Administrator
    Staff Member

    Apr 29, 2014
    Caring for Me and You

    As many of you know, whilst caring can be a rewarding experience, it can also be very challenging. Carers of people with dementia can often experience negative emotions such as stress, anxiety or exhaustion.

    We're funding researchers at Oxford Health NHS Trust to run a study testing whether therapy can be delivered effectively online for carers, and whether this can help them to manage some of these negative feelings. The name of this package is 'Caring for Me and You'.

    How to sign up

    You can sign up to the trial to see if you are eligible, provided that you:

    • live in the UK
    • are currently caring for someone with dementia
    • are not currently receiving professional mental health support

    The website also has further information on what the study involves, and how it could benefit carers.

    If you have any thoughts or questions, please feel free to share them below. We'd love to know what you think :)


    If you're struggling or have questions about dementia, please call our helpline on 0300 222 11 22.
  2. Tiller Girl

    Tiller Girl Registered User

    May 14, 2012
    Im struggling to get back into the site for this research. Its saying invalid log in but when I follow the instructions to reset it, I receive an e mail saying its not allowed !
  3. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
  4. tigerlady

    tigerlady Registered User

    Nov 29, 2015
    I think this forum is a pretty good source of online support. I have learned so much from the posts here - the main thing being that there are others out there in the same situation as me, and I dont feel so alone any more
  5. Tiller Girl

    Tiller Girl Registered User

    May 14, 2012
    Thanks Izzy. Ive sent them a message.

    Trouble is I'm using a new laptop and it seems to have a mind of its own. :):)
  6. technotronic

    technotronic Registered User

    Jun 14, 2014
    I'm gonna give this a miss as its seem to be more about behavioural therapy study and research for medical people than actually offering a service like we get here on Talking Point!
    Caring for someone can be stressful enough with the added stress that this would place on anyone's time and emotions, taking time filling things in when that spare time is more valuable being used resting and relaxing for a while n taking care of one's self for a short time when the chance allows!

    Not interested.
  7. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    I'm working my way through it but to be honest not finding it terribly useful.

    I do understand the logic behind it all so perhaps it's just me. Perhaps I don't really want strategies like those they suggest. If my stress comes from dealing with mega loo 'incidents' taking time to think about the good times we also have won't take away the stress, or indeed, sadness of having to deal with these incidents. If I feel sad and want to cry about what our lives are like now perhaps that's just what I need to do.

    Perhaps it's just that I'm managing my stress in my own way.

    Of course, perhaps I'm just rambling!:rolleyes:
  8. marionq

    marionq Registered User

    Apr 24, 2013
    What you say sums up my reluctance to get involved in any kind of "lesson" or "therapy". I feel it takes me all of my time to do what I do and not crack. I am happy to provide my experience and opinions to anyone who wants them but I haven't got space in my head for another raft of ideas.

    On Talking Point you can take or leave advice and that is about right.
  9. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    To be honest I don't know why I keep signing up for things like this. The only one I ever felt was useful was a Uni of Tasmania course called Understanding Dementia. It wasn't trying to provide help or strategies but I felt it deepened my understanding. Perhaps it's time I called 'chaps' on this kind of course. (Chaps being a Dundee word I think!)
  10. rhubarbtree

    rhubarbtree Registered User

    Jan 7, 2015
    North West
    Caring for you and me

    I have completed this course but whizzed through it probably because of all information I have gained through this site. Feel it is on a very basic level and doesn't get down to the real problems as someone said above.

    Tiller girl. I also had trouble logging in at first. Did contact them but nothing happened for quite a while. Then they sent a reminder and I was able to get in via the link on the email. Annoying having to faff about when our time is so limited.

    Regarding on line courses. Am trying Duolingo (free language app). Good fun and so easy to use. Recommend.
  11. Selinacroft

    Selinacroft Registered User

    Oct 10, 2015
    I'm giving it a go because I like to get involved in everything and I'm always on the computer anyway.
    I think I'm a positive sort of person anyway and I'm quite calm but I think I have my own coping mechanisms and not finding it that relevant at the moment. It may have been more useful when I was working full time but the course can't mend our loved ones, nor increase our income potential while dealing with it , nor make more than 24 hours in a day- but I shall stick with it as a guinea pig and tell them what I think along the way.
  12. aysekucukkoylu

    aysekucukkoylu Registered User

    Mar 10, 2016
    #12 aysekucukkoylu, Mar 10, 2016
    Last edited: Mar 10, 2016
    im in a forum already

    Hi the uni of York is running the same research the contact is kate grindley.

    I am happy to join in your research.

    I have found dementia aware on fb is a great source of info support n hints tips, its a lot easier to use than this site xxx
  13. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    In fact no. The research at the University of York is dealing with a different issue (specifically, specialist nursing support for carers). While that may prove to be a valuable research project, the two things are completely different.

    I'm sorry you are not finding it easy to use this site. You might like to have a look at this
  14. Tiller Girl

    Tiller Girl Registered User

    May 14, 2012
    I found some of the information quite enlightening especially which parts of the brain are affected, aromatherapy etc.

    However as someone else has already said knowing about the condition doesn't suddenly take any of the stress away. I'm finding that it's more about the person with dementia, why they do things etc. I'm not finding anything that is helping me cope with the constant stress.

    I'm looking forward to giving feedback if they ask for it.
  15. Alicenutter

    Alicenutter Registered User

    Aug 29, 2015
    Massachusetts USA

    Sent from my iPhone using Talking Point
  16. aysekucukkoylu

    aysekucukkoylu Registered User

    Mar 10, 2016

    hi i think ive joined up x
  17. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    Can't join as I only have an iPad ☹️
  18. Selinacroft

    Selinacroft Registered User

    Oct 10, 2015
    Hi Bunpoots- what a shame. I didn't know it needed a laptop. I think as they are running a trial and asking for guinea pigs this needs flagging up as a big problem, as many people will be in your situation.
  19. Susan.J.

    Susan.J. Registered User

    Jun 25, 2016
    Is there anything like this available in Australia?
  20. TaffyJ

    TaffyJ Registered User

    Dec 10, 2013
    I tried this in the hopes it would help future carers, but like you said, the pressures on me were already too high to have that precious time used up by strategies I was already aware of, I found it counter productive, and cracked under the strain of constantly thinking about how I felt, when what we actually needed was real, practical, hands on help, advice, guidance in nursing at relative at home.
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