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My site kateswaffer.com is committed to meaningful dialogue with a wide range of stakeholders about the critical issues impacting a person living with a diagnosis of dementia and their families and close friends, academics and health care professionals, as we ll as civil society.

Please note: Opinions or articles and comments on this website in no way reflect the perspectives of Dementia Alliance International, or its members.

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Kate Swaffer © 2019 | Author, Activist, Academic, Keynote Speaker | All rights reserved. Subject to the Copyright Act 1968, no part of this online website may be reproduced, stored in a retrieval system, or transmitted in any form, or by any means, electronic, mechanical, photocopying, printed, recording or otherwise, without the prior written permission of the author.

164 thoughts on “Home”

  3. Hi Kate,
    This year I enrolled in UTAS Dementia care course and I have ben listening to your video in our course. Last week I also saw the movie Still Alice and your story correlated with the movie. Thank you so much for sharing with us, as we are all on a learning curve. I wish well.
    Cynthia

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  4. Hello – I’ve just discovered and have been following your comments in the blog and wish you well. I find the information shared here to be fascinating. Best regards, Eunice S

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  6. Hi Kate,
    I too was introduced to you while doing the MOOC on Understanding Dementia recently. Of the many compelling parts of your story, I was struck by the irony of organizers not granting you the right to give the keynote address at dementia conferences, as if you weren’t to be trusted, as if it was too risky. It wasn’t merely the hypocrisy that was alarming, but it begs the question of why they feel threatened and who these people actually mean to serve.
    I learned a great deal about dementia in the course and it has whet my appetite for hands on experience. I now volunteer at an Adult Day Centre for people with dementia. I get to quietly serve a largely misunderstood group of people who give without intent, who crave and reciprocate affection and who communicate far more than is generally perceived.
    As a baby boomer weaned on Being Here and Now, it is refreshing and liberating to be around people who inhabit the eternal present. There is no affect or pretense, people just being who they are ‘from moment to moment.
    I started playing guitar and singing at the center on Fridays, mostly old tunes from the 20’s to the 60s. The response has been wild. Typically shy and withdrawn people can be seen springing to life, singing or perhaps lip-syncing to old, familiar songs from their youth. Some really get into it and just seeing their feet tapping is so inspiring that at the end of the hour I’m exhausted, dripping with sweat and truly spent, but filled to the brim with a sense of having done something worthwhile. And then, just before I’m tempted to pat myself on the back, the next activity is underway and I am the guy calling out Bingo numbers.
    My goal is to continue learning and gathering hands on experience in order to become involved in advocacy. I enjoy public speaking, delivering presentations and writing. I have posted articles on caregiving in general and dementia in particular and would welcome your comments.

    Thank you for your courage and willingness to provide unique insight into both your view of how you are viewed.

    sincerely,
    Andrew Pick

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    • Thanks for your kind words Andrew, and for joining the covnersation here. Well done on doing the MOOC, and being inspired to do more. I’d love you to think about the term ‘ADult Day Care’, and if whether you agree it is an appropriate or inappropriate name for a service catering to adults, as to me, Day Care (for adults) sounds rather insulting, and I would not wish to attend one. I’d be ok with it being called a social group or club, like in the real adult world… something to think about. Best wishes, Kate

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      • Hi Kate,
        Thanks for bringing that to my attention. The term used here in Canada is actually Adult Day Centre as opposed to Adult Day Care, which may be a little less objectionable. Ironically, the attendees do consider it a social club, a term which I agree would be less provocative. The salient point is that terminology is hugely important and that those subject to labeling are best qualified to inform those using the labels of what they imply or suggest.
        I, for one, stopped using the term ‘seniors’ in favour of ‘older adults’ in my writing as that was deemed more respectful for those over 65.
        One of the articles on my blog: http://www.theagincanagin.com is on why caregiving has yet to become a mainstream topic. It discusses labels as a reflection of social attitudes and suggests that a term like ‘disability’ has evolved from the word ‘handicap’. To some, this may seem merely a semantic distinction and yet, it reflects a growing movement toward universal design and the benefits of accessibility for all.
        Should you have the time and inclination, I would certainly welcome your feedback on any of the pieces in the blog, particularly the one entitled, Destination without Journey.

        thanks again,
        .
        Andrew

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  7. Hi Kate, Thank you for sharing your life with so many people. I remember a patient who had dementia in her 30’s. She had a young family, but this was around 10 yrs ago. I am so Honored to have heard your story and note the changes that surrounds Dementia. Your making a real difference to the world we are in. Thank you. Susan.

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  8. Hello Kate, I have just watched your interview on the MOOC Understanding Dementia site and thankyou so much for bring to my attention that a challenge of younger people, is that they seek diagnosis earlier than older people and therefore present as well and obviously have a longer journey. That was thought provoker for me. Thankyou. I work with people with dementia providing social support and day centre care. We have many friends with YOD, so I wish you well and look forward to reading your blog for many years to come 🙂

    Karen

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    • Thanks Karen, and especially for doing the MOOC. The more people know about dementia, the better our experience will be. My blog today is not really anything to do with dementia, but I do try to add a bit of humour occasionally! Take care… and thanks for joining the conversation here.

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  9. Hi Kate, I’m currently on the tail end of the Mooc course and feel very blessed to have stumbled upon you. You truly are an amazing woman. Most people think I’m odd because I really enjoy Dementia. I find it challenging, fun, interesting and all of that….there’s nothing better than connecting with someone with Dementia it’s such a “win win” situation.:))

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  10. Hi Kate
    I am doing the utas MOOC Understanding Dementia course. Thank you for sharing your story. Your honesty and insight is an inspiration.
    All the best
    Anne

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  11. Hi Kate. I have just listened to your story on the utas MOOC. What an inspiration you are. An eyeopening and insightful interview – you and your family must be so proud of your massive achievements. Best of luck for the future, I will keep an eye on your blog as a great resource for my studies. Thanks, Shelley.

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  15. It is so hard to fully comprehend what anyone with this condition is going through, but your blog is giving me a little insight of what my husband is or has fone through to this stage of his illness. I try to read and research as much as I can to help my husband, but it is even more difficult as he has lost the ability to speak more than one or two words at a time. He was under medication for the last four years but our new neurologist has taken him off the tablets because he felt they were not doing him any good. Since that time, I now find that everything has escalated and he is doing odd things he has never done before.

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  17. Hi Kate was wondering what symptoms diagnosed your Alzheimer? Such a young age. I have signed up to do the free dementia course through the University of Tasmania. As I work in aged care it is of real interest to me.

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      • Please can you help me from time to time through my journey with my brother who has frontal lobe dementia – diagnosed 6/2010 & in may will be 63 yrs old. He use to be an architect. Tks

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      • Dear Linda, I am so sorry to hear about your brother, and hope you all find strength in your love for each other. My only advice would be that you BOTH to get as informed as you possibly can, and your brother works on maintaining as much of his pre-diagnosis life as possible, for as long as possible…

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  19. Kate,
    Your name & details where given to me from Samantha Blake Alzheimer’s Australia.
    Not to hold you up, a brief overview, I due to workplace accident now am suffering with ABI & with memory & cognitive issues, unable to return to my profession & with Workcover rehabilitation worker I am studying Cert 111 & Cert V in fitness & training (focus on injured, elderly & Dementia sufferers)
    Initially the Speech Pathologist & Neurologist where looking the course to give me some purpose & brain training as well, I have completed Cert 111 but due to a blackout in Jan 2013 in which set me back, I haven’t completed the Cert v but hopefully soon.
    I have signed up on your newsletter and am offering whatever assistance that you deem appropriate.
    Dementia has touched both family & friends and improving quality of life is my mission or goal.
    Again thank you for your time

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  20. Hello kate,

    I lost my father in March this year from complications associated with Dementia. I would love to find out how I can help people with Dementia.

    cheers
    soraya

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    • So sorry to hear about your father Soraya. I’d suggest you contact your local Alzheimer’s Australia office, or a local nursing home as they would always love a new volunteer too!

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  21. Thank you for visiting my blog and your kind comments. My beloved father suffered from AD and it is 2years since he forgot how to breathe. He was an amazing gentleman and never forgot his beautiful manners. He forgot my name but would never pass through a door in front of me. He forgot how to walk but never that Vic was ill. Your blog is amazing.

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    • Your blog is amazing too, thank you for sharing your heart and wounds. How incredible he never forgot your darling daughter Vic was ill, which also means he never forgot her. Take great care.

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  22. Hi Kate – following our email exchange and the lovely time we spent together recently in sunny Adelaide it’s great to check out your site again and I look forward to reading about your recent activities.
    All the best to you and Pete
    Keith

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  23. Hi Kate, Richard Taylor told me about you,so I looked you up on the internet, I am in exactly the same position as both you and Richard, I had a website set up for me to tell anyone interested of my A/D affliction and how I am coping. please Google my website at………www.adbi.com.au…….I live in Queensland……Regards…Tony Hogben

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  24. Kate, I came to your site after you visited mine. I am so glad I did. What a wonderful opportunity. I just finished watching the little clip “what is this?”, which I loved. I too use my writing as a way of connecting to other interesting people who challenge me to go deeper. I look forward to reading more. Beth

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  26. Kate, I am so enamoured of what you have written in your “about” section. What a journey you have before you. . .I can’t begin to imagine what that feels like for you. I do admire your wonderful attitude on life!!! I want to know more about you and follow you as you show the rest of us how to deal with such a diagnosis. You are quite the heroine! Keep doing what you’re doing. . .lots of us will be here waiting for you.

    Blessings
    Sandy Ozanich

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  27. In addition to reading here, I just watched your debut rally speech on youtube and love and respect you for speaking out this way! You are truly helping show everyone how to handle these conditions with greater understanding and humanity. Thank you! Keep it up. I am pulling for you.

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  28. Dear Kate.
    It was lovely to meet you again at the launch of your DVD. With your permission we will show it to others in a similar situation and their carers, I know the strength you have shown in your journey will be a great inspiration to so many.
    Thank you for making your story available.

    David and Faizal

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    • Thank you dear David and Faizel, it really meant a lot you were both there to support me. I hope the DVD helps others, which is the only reason I agreed to making it, so of course you can share it! Take care, Kate

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  29. Kate, My name is Tracey D. and I have finally sat down and have logged on to your blog. I met you a few weeks ago at the Consumer’s Alliance Group in Adelaide. I look forward to reading about your insight into the journey you are going through and experiences I might expect to share with my husband too. Thank you. Tracey D xxx

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    • Thanks Tracey, and I’m glad you have tuned int. By the way, I htought it was quite a good first meeting. We just need to convert ideas and words into ACTION, the time old challenge of all committees! Take care and see you in September. xox

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  30. “My Unseen Disappearing World” 2012 Adelaide Fringe. I attended your show back in February. Thank you I am a Carer for my Wife Helen diagosed with Dementia in 2007. Your gave me some understanding of what was going through Helens mind the frustration and the daily battle to life normally as possible. You spoke well with passion I must Thank You for this and having the courage to share your story. Keep Strong and follow your passion.

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  32. Hi Kate,

    Have you ever considered including Coconut Oil in your diet? I see you are a keen cook, why not replace Margarine (full of deadly trams fats) with Coconut Oil…an oil with so many health properties…including the improvement in memory and cognitive decline…

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  33. You are a true inspiration! Thank you for sharing, i look forward to learning more from you and from your life experiences! Your making a difference that matters everyday!
    God Bless You Always

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  35. Your blog is the first thing I read when I open my laptop in the morning. You seem to own such a strong wisdom!
    It’s a good start of my day and a possible start since you are several hours ahead in time.
    Thank you! / Inga-Lill

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  36. Hello, you are an amazing person, mom, spouse, person living with the symptoms and disabilities of dementia. It is an honor for me to get to know you better through your blogs. I look forward to spending some time with when we are together in London at ADI

    Richard Taylor

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  38. I’m really inspired with your writing talents and also with the format on your blog. Is that this a paid subject matter or did you customize it yourself? Either way keep up the nice high quality writing, it is rare to look a great weblog like this one these days. Goodbye from France

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  39. Hi Kate – on Friday I received a written reply from the Attorney General’s Department following a meeting with one of his staff members. My reason for meeting was to discuss my concerns about the lack of rights a person with dementia has in residential care. The reply was, to put it mildly, inadequate and totally naive. My concerns were passed on to the Human Rights policy branch and the writer pointed out that there is Accreditation, a Charter of Residents’ Rights and Responsibilities and the Complaints Scheme – so according to the writer a person with dementia can sit down and write down their complaints, they can read and understand the Charter or indeed make a verbal complaint. They apparently have the right to “move freely both within and outside the aged care home without undue restriction”. We all know that this is not true. So if the person suffering with dementia can ring, write or read and understand all these schemes and have freedom of movement – then we probably need to rewrite medical science!!!!! What an uphill battle this all is when I read such rubbish. But it is a battle that I will vehemently fight. All I can say to the politicians is ‘WAKE UP”. Now I have vented I feel much better. Hope and Love Robyn

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  40. Hi Kate

    I have been without my broadband the last day, so am just catching up now. How did we live without this technology???
    No I dont think you are too hard on the nursing staff. I think it comes down to the training and education of nurses, doctors and allied health. I believe your article is spot on. I too have been disturbed by how patients are treated in hospital – especially those who are aged and those suffering from dementia. I have known older people to be able to walk before they entered hospital and by the time they left couldnt walk, hardly feed themselves etc. and so they are diagnosed as high care and finish up in residential aged care.
    My mother in law at 93 years old was admitted to a private hospital. Unfortunately, she died within a week of being in hospital. During this last week, she was bashed by another patient – I dont blame the elderly patient who bashed my mother in law but I do blame those who should have been caring for this woman in a more appropriate manner. I had to feed her and cut up her food, no one offered to do this – she couldnt do this herself and would have gone without. She didnt have an ability to read or work out the menu let alone tick the boxes – but they still gave her a menu to fill out herself. COME ON!!!
    On the last day of my mother in laws life, she was moved into a single room. I came in to find her false teeth hanging out of mouth, her lips were so dry (I had to ask for mouth care and some ice!!!).
    So yes, we still have a long way to go. Like you I continue to lobby, speak to whoever I can and advocate. I will do this until someone listens and there is a change in how we treat, respect and provide dignity for all those who at times have no voice. Its interesting when I heard that Government were looking at writing a Charter of Human Rights for Aged. We already have a Charter of Human Rights in Victoria and Canberra and soon to be Federally. If you look at the Charter, we just fall so far short for people who are aged and/or who suffer from dementia. The feedback I get when I speak about this is that yes, we know they do. Well, HELLO, to me its not rocket science, if the aged or those suffering from dementia were a psychiatric patient, an asylum seeker or a prisoner – they would have more rights than what they have now. Just how is this allowed to continue?
    I spoke to a group of older people today. Its a group of senior citizens who meet on a weekly basis. They were telling me that the Council have taken away the bus and bus driver that would go and pick up the people to bring them to this day where they have lunch, play bingo etc. As most of the people cannot drive, some of them have stopped coming. They tell me they are even frightened to get a taxi . For some this day is the only day they get to go out and the Council have removed their transport. So, I am up to facing the Council on their behalf to get their bus and bus driver back. A dog with a bone!!!
    Hope and love Robynx

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  42. Hi Kate,

    Talking about legacy to children as you do above under “Home” I thought I might share a different take on “children”

    To be child
    and see the wonders
    of this world.
    To see a child
    and know a wonder
    of the world.
    To know a child
    and share the wonders
    of his world.
    To love a child
    and know that he will grow
    to cease to wonder
    at this world
    is when
    the time has come
    to start again
    To be a child.

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  43. Hi Kate,
    you have created a wonderful forum for documenting your journey through the condition you live with. This will be such an inspiration for other people who have similar experiences.I love the look of the blog and look forward to keeping up with your journey. Kerry from 100 leaders project

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    • Thanks for sharing your story–I live in the US–and am 45 years old—I thought I had a stroke in 2007–and I had terrible migranes also—it was a terribly hot summer–and the neurologist said no Stroke-Yeah–but she saw brain atrophy–and she said it must be from alcohol abuse (and believe me–I told her no–I did not abuse alcohol like she suggested)–
      after looking at my MRI-she said I am eventually going to come down with dementia– just like it happened to my grandfather in his late fourties… So I am fighting the fight right now–I take EGCG pills and also regular green tea extract, I walk three times a day–for almost 3 hours a day–and eat spinach/salads (I heard cinammon and coconut oil–helps dementia)-but my blood gets too thin–and I feel faint-/and have nose bleeds–, I can’t tolerate hot weather above 70 degrees–or I have vertigo. They should have a cure by now–for this disease—but trying to enjoy each day left on this earth. I can relate to your feelings–
      Mari Indiana, usa

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  45. Kate, I just want to say publicly that you are the most inspiring person. Seriously. It is an absolute privilege to know you and have you in my life. I didn’t see the 7 30 report yet but my Aunty Moira has it saved. Thank you for sharing your story and giving such a valuable insight so that other people can understand at some basic level the challenges you face and the courageous way in which you are doing this. I bloody love ya Kate! Will catch up very soon!

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  46. Hi Kate,
    Saw you on TV the other night and relate to your circumstances. I was particularly upset about the fact that traditional medicine has failed to offer any significant solution to your problem, not that this is unusual. I am one who believes that there may be a solution or at least a lot that can be done to ameliorate your outlook. If you are interested, can I refer you to a web page or would you like to talk? Here is the web site anyway for your background information.
    http://www.in-sync-minerals.com
    my email is terry@in-syncminerals.com
    Kind regards and best of luck

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  47. Hi Kate Wonderful to meet with you yesterday at the march. Just wondering if those nits have been annoying you today (ha ha!!) – I am the one who loaned you my hairbrush. Would love to keep in touch. RobynX

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  48. Hello kate what a tower of strength you are! I work with these type of clients every day there are so many interesting features about all of my clients, If I may? may i keep in contact with you, to follow you on your journey with you? so i too in future are more able to assist to my clients with friendly loving reassurance, as where i work Parklands Cottage Inc. Every day is a new day with wonderful things to still experience in life flowers, birds, animals, smells, it would be a privelidge to follow you on your wonderful life & that every day is different. As long as we smile at least once a day i feel that i have made someone very happy.

    thank you for allowing me to go with you on this endeavour that you are taking.xx

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  49. Kate, I was very interested in your interview on TV. You are very brave to share your journey. I am having some of the difficulties you mentioned but the doctor is calling it ‘haemaplegic migraines’ Have you written a list of your symptoms that I could read? Thank you, Rae Anderson

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  50. Hi Kate, My name is Jane and Valerie S let me know about your blog. Am SOO glad that you have decided to write and I look forward to your insights.
    warmly
    Jane

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