Dementia Alliance International

Dementia Alliance International (DAI) is a registered charity, providing a support and advocacy service for people with dementia from all around the world.

This organisation aims to provide free support and srvices to improve the quality of life for those living with dementia and their families. It also aims to educate the wider community, and to advocate globally for dementia to be recognised and managed as a disability.

DAI’s Vision: A world where ALL people are valued and included.

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 regular newsletters by subscribing on the left hand side of the home page.

21 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.

    Like

    • 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

      Like

      • Hello Kate,

        I just read about your experience about presenting your very short paper regarding the theories about how care facilities and staff do not understand the behavioural and psychological issues when working with residents who have dementia. I live in British Columbia in Canada and specialized in psychogeratrics for 20 years. I am a Social Worker and worked with older adults in hospitals and in community mental health services. You are absolutely on the right track when you discuss the lack of knowledge and skills amongst the staff who are working in care facilities! Most of their training is driven by the medical/nursing model of care rather than understanding the social environment that create or exaggerate problems. Simple knowledge about dementia, aging, and their emotional and psychological needs are often a foreign language to front line staff. Often, the staff only learn about who a resident was in their early life in any depth. While they often haven’t read the Social History on their file but when the person dies they often read a posted obituary! Part of my job was to conduct educational sessions to try to help staff see the residents through a new lens. I found front line staff were very open and interested to learn new theories and practices but were rarely supported to use them.

        I wondered if you had ever heard of a book called,” The Validation Therapy” by Naomi Fell the author and trainer across the world. She started developing new theories and practices in the 1960’s and 70’s. Her theories and principles are still just as appropriate now as they where then. Naomi Fell, was a very innovative Social Worker in the United States and was very successful with older adults. She wrote a few books and produced some videos to show how it worked. She worked for decades with seniors and her videos are an inspiration and convincing when shown to staff in care facilities.

        Just a bit of professional wisdom in this story for you….One day at work, I learned that an Regionial Direcctor of Mental Health Services called me “an elitist” in my expectations that Standards of Practice must be followed. After he left our office I felt very sad about his comment to me. Then one of my staff said to me, “Really, Dusty, you need to remember “that all the right people love you, and you should worry if the wrong people love you?”

        So, Kate, “all the right people love you and don’t worry about those who criticize your very important theories and work….all around the world people are in your corner cause we know you are speaking truth to power! GO GIRL, GO!

        Like

      • Hello Dustine, and thank you! Your comments mean a lot. I know the wonderful work of Naomi Fell too, love it. It’s a lovely reminder to read your message to Dusty too! Thank you. X

        Like

    • Dear Annette, Thank you so much for your post. This is very reassuring. My partner has dementia and I’m so concerned that we’ve missed out on the disability services because of her age (66). I’ve also wondered if anyone continues to care for their partner at home. Your message gives me hope.

      Like

  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

    Like

  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

    Like

You are very welcome to respectfully join this global conversation.

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.