Dementia Alliance International

DAI-nothing-without-us

Dementia Alliance International is a non-profit group of people with dementia from all around the world that seek to represent, support, and educate others living with the disease, and an organization that will provide a unified voice of strength, advocacy and support in the fight for individual autonomy and improved quality of life. Dementia Alliance International is a US Corporation with 501(c)(3) status which means donations by US citizens are tax deductible.

If you are diagnosed with dementia, please follow the link to join; if you are interested in what we do, please follow this link and sign up for our weekly blog and occasional newsletter by hitting the Blue or Black box on the left hand side of the home page..

8 thoughts on “Dementia Alliance International

  1. I felt so heartened when I heard you on radio this morning Kate. My husband died at home in June this year, 14 years after sustaining a severe brain trauma and about 8 years after a dementia diagnosis (apparently most likely due to his acquired brain injury). He and I remained at home together by utilising mainly disability support so that Peter continued to access a range of activities with assistance. We had difficult experiences with aged care and hospital services whose approaches diminished Peter’s skills, independence, control, and dignity. We ultimately resisted any hospitalisation or contact with aged care residential or respite due to the unhappiness and fear it ultimately caused us. This meant that I cared for Peter at home after a stroke 2 years ago and was denied access to rehabilitation (eg physio) due to his dementia diagnosis. This increased the work and support needs from me but we lived happily at home and Peter worked hard to regain some mobility. To me, aged care is focused on illness and decline and there is an ‘accepted’ associated loss of autonomy. Disability support enabled skill maintenance and development, and was a much more effective and dignified approach. Peter was ill for just a few days before he died (age 78 years) but had a full, happy and active life due to the philosophy of disability support.

    • Thanks for sharing your own story Annette, and for connecting here. I’m delighted through good disability support, your husband managed to have a good quality of life; very wise of you to resist aged care, and well done you for caring for him at home. I especially love this line, and will quote it at some stage if that is ok?

      “Disability support enabled skill maintenance and development, and was a much more effective and dignified approach.”

      Take care, Kate

  2. Reading about you today has given me hope.i was diagnosed 6 years ago, and every day has been a fight to stay engaged in the world.i had no idea that other people were fighting not to let go and that there is potential to exceed medical expectations and this has truly motivated me to keep going

    • Keep going Theresa… ignore those well meaning people who try to stop you, or worse, who will then say, ‘but you don’t look like you have dementia’ when you continue living, instead of just going home to die. big hugs xx

  3. Dear Kate
    I have just read today’s SMH article about your “living beyond dementia diagnosis”.
    I have been a psychologist for over 40 years but also a biologist (for a bit longer). Im pleased that finally psychology & biology are “talking” to each other in the world of science.

    I’m not a blogger but I would really like to talk with you about the questions that come into my mind about what is happening when there is a major “systems disruption” as occurs with the various patterns of dementia (and the “biology” of it). Also with the members in DAI – gather data and share.
    I live in Northern NSW but would travel south to meet up with you if that were possible
    or talk on phone or Skype.

    What are your thoughts on the “out of the blue” enquiry?
    Sincerely
    Colleen

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