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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.

I wish to acknowledge the traditional owners of country throughout Australia, and their continuing connection to land, sea and community. I pay my respects to them, their cultures, and to elders past and present and emerging.

No Medical Advice: Information and other content included on this website is for general informational and educational purposes only and is not meant to be a substitute for the advice provided by a professional health care provider. You may not use or rely on any information contained on the Site for diagnosing a health or medical problem or disease. Comments made by others, and approved for posting on kateswaffer.com are opinions of the authors, and do not represent the opinions of Kate Swaffer.

Always consult a professional health care provider regarding any health or medical condition or treatment. Do not delay or disregard seeking professional medical advice on account of something you have read or listened to on http://www.kateswaffer.com

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.

172 thoughts on “Home”

  1. Hi, I am an audiologist running a domiciliary hearing care covering hearing tests and hearing aids for the elderly and seniors in South London UK (www.hearingnow.co.uk). I often come across a couple of patients with dementia every month or so when I visit them for ear wax removal or hearing test or adjusting their hearing aids. Just wanted to remind everyone in the elderly care services that there is a bold line between hearing loss and dementia. Please make sure that you encourage your elderly parents or relatives to take a hearing test. Thanks

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    • Thanks Koorosh, as I am a person living with dementia, thanks from me, for your advocacy on this. Too often, people with dementia are accused of not having capacity to understand, when in fact, they cannot hear!

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  2. Dear Kate Swaffer,
    I write on behalf of my remarkable sister Catherine (Verner) – who lives on the west coast of Scotland, UK.
    For the past 10 years, she has been a care giver at home to our dear mother who suffered from combined Alzheimer’s Disease / Vascular Dementia, until she passed away peacefully in October 2020.
    Catherine was also awarded a Master’s degree in Dementia Studies from Stirling University, and retains contact with the University’s center of dementia research.
    Today, her passion is to reach out and help other family caregivers in a situation that she found herself in many years ago (primarily via her website).
    The website, is a combination of free resources plus a growing series of informative and practical books for sale, all aimed at supporting families living at home in the community.
    It can be viewed here.

    https://clickdementia.com/

    Catherine writes regular Newsletters, which are informative and in-depth, topical and insightful, and I was wondering if she could become a free contributor on your informative and touching website.
    I believe her articles would appeal to your readers, who could benefit directly from her combined theoretical and practical expertise.
    Catherine would also be open to researching and writing about topics that you think might be relevant.
    I look forward to hearing from you soon.

    Kind regards,
    James (Turley)

    ‘Dear Catherine,
    You looked after your mother so well, which should make you proud.
    Dr. Laverty (Family Doctor – UK NHS)’

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  3. Hi Kate,
    I’m from Singapore and have been treating younger people with Parkinson’s and dementia especially below the age of 68. In my humble opinion and the caregivers of the people I work with, their condition either improved or deterioration curtailed. I have to also admit that the measurement of result is home-designed by myself hence I was thinking if you have or can kindly advise me, the more widely accepted tests format which I maybe can use for better reference?

    I started learning anatomy but a few years ago I decided to learn TCM and I am using “bio-energy electro therapy” to stimulate neurons. Look forward to your email. Thank you.

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    • Hello Michael, thank you for your comment and questions. I’m unsure if I know how to answer your question. I’ll do my best to remember to email you. Best wishes, Kate

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  4. Hi Kate,

    I am a graduate student at the New Jersey Institute of technology. I am working on a mobile application to assist people [diagnosed with] Alzheimer’s [or another dementia]. I was wondering if I can connect with you & have some insights on how can I improve the hardships which they face in a typical day. Your suggestions will be very valuable to me.

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  7. Hi Kate,
    I’m another one who is doing the MOOC through the University of Tas “understanding dementia”
    I just wanted to let you know that I find you inspiring and to thankyou for not listening to your doctors to disengage.
    All the best to you your husband and kids
    Regards
    Liz

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  8. Hi Kate.
    I have been accepted into UTas’ Bach Dementia Care, but I’m just doing their MOOC Understanding Dementia this semester, hence following the link to your blog. I haven’t received a notification e-mail in regards to subscribing to your blog and was wondering if this would occur? As I’d be very interested in your information.
    Kind regards

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    • Hi Joshua, Thanks for connecting. I tried to add you, but the message came up that you had already signed up. Let me know ifyou still have not received the email that asks you to confirm you want to follow my blog. And congrats re being accepted into the BDC course, I really hope you enjoy it.

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  9. Dear Kate,

    I just watched your video talk ‘The Power of Language’ on youtube and wanted to say thank you, it was supremely interesting and enlightening and a wealth of critically important reflections which I look forward to taking into my conversations with others.

    All the best for your 2018 endeavours,

    Anthony

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  10. Dear Kate.
    I have just read the most awful attack on you by a carer/ partner of a person living with dementia on Facebook. I met this woman at the Symposium of Dementia and Love in Ballarat one year ago and found her to be volatile and totally self serving, leaving her partner to the care other’s who did not even know her. Following her comments on Facebook since then, I find them to be hateful vitriolic attacks on people who seem trying to help her and her partner. Sadly she has now included you in one of these many attacks which has finally forced me to block her. Please don’t take any of her opinions on board. I think that you are AWESOME! The person that you are and the work that you do are valued by so many both in Australia and Internationally. Please stay strong in the face of thus adversity. You have my complete support. My thoughts and prayers are with you.
    Much love
    Sue.

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    • Thank you for sharing your experience and also for reminding me to stay strong. Much respect and love for being willing to show your support here. Today has truly been a blur… which without support I’d not get through easily. X

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  11. Kate,

    I feel lost as I believe that I may have early signs of Lewy Body, and have noted, for some time, subtle changes that may be due to age, I am 63, but may relate to a disease process. I find that when I talk to my GP, who is transient as I live in a country town, he looks at each item individually rather than looking at the broad picture. I also checked the Royal Adelaide Hospital website but found no specialists in dementia or Diseases of Aging, although I am sure they must exist. I am concerned because for 3 years I was mis- diagnosed until 1990 when I was finally diagnosed and correctly treated for another disorder, despite visiting a number of doctors. Now I am concerned that the cycle is starting all over again as my symptoms are not consistent and could have other causes but finding a doctor who will see me holistically and see me now is creating significant angst.
    I realize that you are not a referral service but I needed somewhere to vent my frustrations!

    Thanks

    Geof

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    • Dear Geof,
      I’m so sorry to hear of your concerns re the possibility of Lewy Body dementia, and the equally frustrating issues (again!) with medics taking you seriously. With your permission, would it be helpful if i emailed you? Whilst your email cannot be seen publicly here, i can access it. Take care,
      Kate

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    • I am running into medical gaslighting. I encountered a naughty neuropsych who, after my testing, actually told me that my only real problem was that I resented my dead mother, that I needed a shrink, and that I was making up symptoms and intentionally trying to flunk the test (malingering) so I could go on Social Security Disability (I’m in the U.S.). I was speechless. I was to retest in a year, and BAM! — the novel coronavirus. Then in March, while sheltering in place, I connected with half-sisters (I’m adopted) I didn’t know I had. I learned from them that my birth father and his two sisters had all died of Alzheimer’s. I have finally determined to see only those medical experts who see dementias every day, all day, to the exclusion of all else. As a (now retired) book publisher, I note that you write extremely well and wonder if you’ve heard this one: “You write so well, it’s impossible for you to have dementia!” I hear it regularly. I wanna smack ’em in the kisser, frankly. Be well, Betsy

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    • Dear Betsy, I’m so sorry to read about your terrible experience! I did laugh though at your last couple of sentences, especially about what you’d like to do to ‘their’ kisser! I know many people who would feel / have felt exactly the same! Stay safe and well too and I hope you find some good health care professionals to support you. Kx

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    • Geof, i was initailly diagnosed with Early Onset dementia 3 yrs.ago and fell into a deep depression until i found a great support group in Dementia Alliance International – http://www.joindai.org
      A year ago, i started having new symptoms if Lewy Body dementia, and when i asked my local neurologist if she thought it could be Lewy, she said no.
      Ive since found out thst MANY neurogists DONT know much about Lewy Body, and MOST doctors havent even heard of it, so you may need to educate your other doctors about it….
      My recommendation to you is to educate yourself about Lewy Body dementia as much as you can, as it is one of the more complicated dementias as far as symptoms & treatment. If you havnt already, visit
      Lewy Body Dementia Association
      https://www.lbda.org
      The next thing i offer you is to get in a support group spevlcifically for Lewy Body. There is one on Facebook that has online meetings on Monday, Wed., Thr., and Fri.
      Just go to Facebook, and type in Lewy Body dementia in the SEARCH and you will find this support group and others!
      You may also contact: Curry Whisenhunt thru Facebook, who is the founder of that support group who also has Lewy. He is wonderful, and SO HELPFUL!

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  12. Hi Kate,
    You are such an incredible woman! I am so inspired and in awe just reading what you do. I am currently doing the ‘Understanding Dementia MOOC’ and came across your story & instantly clicking on the link to your blog..& finding myself here posting a comment. I have worked, as a Carer in a Dementia Unit, with high functioning residents but clearly, you just opened my eyes and understanding to a whole new dimension and approach in life in how to just get on with it. You’re a Light and definitely blessing others with it.
    God bless you!

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  13. Dear Kate
    Thank you for commenting on the discussion on the British Geriatrics Society blog on Frailty https://britishgeriatricssociety.wordpress.com/2017/08/02/the-frailty-industry-too-much-too-soon/. As a geriatrician and falls prevention specialist of 20 years I have felt increasingly passionate about the role of public health in the well being of older people and feel we are crucially placed to promote interventions which will avoid or delay the onset of many conditions affecting older people, particularly in partnership with primary care. I too feel dismayed when debate and expression of views are shut down by habits seen too often in social media.
    Kind regards
    Anne

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    • Hi Anne,
      Sincere thanks for commenting here; it is appreciated greatly. I had heard that blog has now been deleted, but it appears not. What a shame if it had been, as open dialogue should be allowed, and is the only way we can make our world a better place, including for people who are frail (I dislike that word too), ageing or living with dementia like me.
      Best, Kate

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    • Hi Kate
      Thank you for your reply. I agree on the need for open, respectful dialogue, in order to maximise contributions and minimise group think. Thankfully only the more overt personal attack on a colleague was removed, but even its temporary appearance it likely to have had a far wider effect than on its target.
      I wish you continuing success in educating us in health, dementia and manners!
      Best wishes
      Anne

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    • Thank you Anne… and the far wider effect, is mostly the reflection on the person who made the comment which the BGS rightly decided was so offensive they removed it.

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  15. “Rainbow at the end of the Tunnel”

    HI Kate,

    I am not sure whether this is the spot to add my comment. Hope it is as I want to let you and everyone know that your book: “What the hell happened to my brain?” has really touched me tremendously. I am a health care professional working in aged care (community setting) and many of my clients have dementia. I found that most of them seem to be just given “Prescribed Disengagement” as you have mentioned and it is so depressing. I then went on to embark as many Dementia on-line courses as I could to help me understand more about dementia, so that I could find light at the tunnel for my clients living with dementia;

    Although these courses help me to understand dementia better and bring me a little bit of light at the end of the tunnel, but after reading your book I feel that I have found a “Rainbow at the end of the Tunnel”! It is SO EMPOWERING. Your book says all!! Although I have finished reading the book, your messages still resonate in my mind. You have empowered those living with dementia and you have shown to others that those living with dementia are the ones who will show us the beautiful rainbow. I strongly recommend that your book should be a text book for all those interested in finding more about dementia! The more I learn about Dementia from my on-line courses the more depressed and anxious I felt, but after reading your book I felt inspired!! Thanks Kate for sending us the “Rainbow at the end of the Tunnel”!!!

    Truly inspired,
    Jo

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  16. Dear Kate, I have just finished reading your book “What the hell happened to my Brain!”. I have found this very inspiring and have implemented some of your suggestions into my Dementia wing at my aged care facility. I am only one person trying to make a difference to my residents and am trying to provide them with care that is centred around them and not their disease. I agree that there is not enough support for persons living with dementia and agree that Dementia should be treated as any other debilitating disease. I believe that persons should have the opportunity and services provided to them as other people diagnosed with other diseases. If you have any advice in how I can improve the quality of life to these residents PLEASE let me know. I work as a nurse in an aged care facility and have many people with Younger Onset Dementia. I feel compassion for those people and have seen the slow decline in abilities to these people. I want to speak out about empowering people living with dementia. Thank you for the Book, I found it very helpful. Thank you for being so honest with your thoughts and feeling.

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    • Kate you are an inspiration to all people living with Dementia. But not only Dementia but people living beyond any disease. I was surprised that you answered my post, being just one person in a small town in Central Queensland. I just want to make a difference to a persons life. Being ‘locked’ in an aged care facility can’t be easy, especially when a lot of our residents are from the country and have known nothing but wide open spaces where they were free to live how they wanted.

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    • Thanks Sharon… as per a comment on my blog yesterday, “If everyone was engaged in meaningful activities to prevent boredom and the environment was easy to find your way around and all staff treated everyone with the respect they deserve there would be no need to lock doors as no-one would want to leave.” Keep up your great work, and stay strong in your commitment to making a difference and creating positive change for us all, regardless of how many people tell you not to bother, or that it is not possible to support us other than in locked units (jail). xx

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  17. for school i have to pick someone to be the Australian of the year for 2018, and i have chosen you this is some of the criteria i have to use 1. background information 2. demonstrated excellence in there field 3.significant contribution to the Australian community and nation 4. and inspirational rolemodel for the australian community. and would appreciate if you could help fit some dot points in those section/criteria 🙂

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  18. Hello Kate, I was touched by your story and your life, on how you are dealing with Dementia and I agree with you it is a disease not understood. I have my Mum 83 years of age which I believe has Dementia but I don’t know much about this Desease it’s very hard to know. She has Depression and phobias where she always sees things that are not there or believes that a person is trying to strangle her, I’ve tried getting my age care to access her or someone at Monash a health to diagnose her but it is a long waiting list, she has poor vision and that is a 2 year waiting list to be seen. I am her only son and primary carer for her but not knowing how to deal with her phobia or dementia is very hard for me. I want someone to help her straighten up her mind or speak to someone that can tell me how I can help my Mum not to have this phobia or hallucinations and if it is related to Dementia or something else ? She doesn’t speak English which adds to the problem in trying to find a specialist. She has locked her self out of the house 3 times she forget to turn the gas cook top luckily it turns itself off as a safety feature but it is still nerve wrecking for me, she puts things in the cupboard rather than the fridge etc.

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  19. Hello Kate, is there any chance you might be speaking in Brisbane sometime? After doing the “Understanding Dementia” MOOC and following your blog, I have a much greater understanding of dementia, especially the emphasis you place on continuing to be involved in a positive and productive way after a diagnosis of dementia. Thank you for what you’re doing. Regards, Mary

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    • Hi Mary, not this year, but I will be next year on World Alzheimer’s Day – 21 September 2017! I’ll try and remember to add the details of the event to my blog so you can register… feel free to remind me! I’m glad yo have found the MOOC helpful as well. Take care, Kate

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  20. Dear Kate Swaffer
    I have been reading your book with great interest. i am editing a book on representations of dementia in literature for Routledge and i wonder if i would be imposing greatly on you to ask if you might consider offering a contribution – your own meditation on how literary works represent dementia. Your point is only too well taken, that the voices of people living with dementia are seldom heard and I have to say that this is a big deficit in my own book. It would be so fine if you could contribute a piece. The normal length is about 5500 words, but if you want to write ( or audio-record or participate in a skype interview, or whatever might suit you best) then the floor is yours, as we say in Ireland.
    I have only just come on your work and the official deadline for submissions is the end of 2016, so my apologies for such a tight time-frame. I am very happy to tell you more about the book.
    I am a senior lecturer in education in Queen’s University, Belfast. My fields ( some of them) are literature, mental health and voicing.

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  21. Somedays like today, I am tired of apologizing…for misspeaking, for misunderstanding, for ending my sentence abruptly with “never mind” because I forget the words or the subject, for feeling helpless in a moment of anxiety or overwhelm, for not know who you are, for forgetting who I am…

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  22. Hi Kate. I knew when I read your author’s note ending “… so perhaps, if I have been repetitive, we can simply call it dementia-friendly,” that I would find much of personal value in your book.

    I’m only a few chapters in, but I’ll go ahead and thank you now. Thank you for shining a light on what feels like a taboo subject here in the U.S. Thank you for your honesty and wit. And although my story is not exactly like yours – what you write feels familiar to me. At 67 my brain is ever so slowly betraying me. But I need no medical intervention nor do I want worried looks from friends or family. I work. I write. I stay physically strong. And I believe that rather than losing myself as my dementia progresses, I’m finding a revised version of self that I’m pretty fond of.

    My best to you, Kate Swaffer. You are a remarkable woman.

    Dee

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  23. Review of What the hell happened to my brain? Living beyond dementia; by Kate Swaffer published by Jessica Kingsley
    2016
    ISBN 9781849056083

    What The Hell Happened To My Brain? is the story about the impact on the life of a very busy woman of an “uninvited visitor”, an “unwelcome 50th birthday present” – dementia.

    The author, leading international advocate Kate Swaffer, describes her experiences. She offers her story and reflections to powerfully argue for a life beyond dementia, beyond the diagnosis of dementia, to show people “who I really am”.

    The author speaks of stolen dreams, of being cheated, of dementia as a pseudo death, of drowning under the weight of guilt and loss and of hallucinations where strangers and wild cats occasionally stalk her. Her ‘high functioning brain’ has slipped away, sometimes showing itself like a ghost. She describes her soul has being sucked out little by little and watching herself die. There are tears, lots of tears, and ‘hiraeth’, the bond for home – ”who I once was”. She misses her memory, which has become a desperately bare landscape.

    This very personal story is combined with a comprehensive reflection on the issues concerning the impact of dementia on people’s lives and of the lives of those around them: from “why me, why this, why now?” through illness, sadness and positivity, the burden of disbelief, younger onset dementia, grief, loss and guilt, myths, loneliness and stigma to family care partners, interventions, advocacy and more.

    The author rails against what she describes as Prescribed Disengagement, where people are told to go home and give up, to get their end of life affairs in order and give up work and study to ‘live’ for the time they have left. This, she argues, leads to fear and removes any sense of hope for the future. On the contrary most people with dementia live in the community with support and participate in activities they did before diagnosis. Reclaiming a pre-diagnosis life and ignoring Prescribed Disengagement is to “reinvest in life”.

    This includes regarding dementia as a disability, with better advice and services that enhance quality of life, well being, support ‘fighting for our lives’ and provide positive meaningful engagement that breaks with traditions steeped in bias, stigma and the discrimination “that isolates us”. Including dementia as a disability would mean that “many more of us would simply get on with our lives, accommodating our particular disabilities for as long as possible”.

    Explanatory lists that effectively illustrate the author’s points include the impact of younger onset dementia, the impact of delayed diagnosis, the myths and responses to them, positive response to Prescribed Disengagement, response strategies through assistive technology for disabilities caused by cognitive impairment and steps to becoming dementia friendly accessible communities.

    The author speaks warmly of her family, of the impact of her dementia on her teenage boys and her ‘her husband, who she calls her ‘Back-Up Brain’, and their corresponding support. A Back-Up Brain empowers the carer to be with or alongside the person with dementia rather than to care for them; a subtle but significant difference.

    Professionals talking about managing behavioural and psychological symptoms of dementia (BPSD) drive the author to ‘ranting distraction’. Are we to manage behaviour or improve staff education about dementia and client communication needs, she asks?

    In discussing interventions, the author outlines her own experiences as a blogger. For her, life stories and poetry based around the narrative of one’s life, are not only valuable “for us now” but has the potential to provide a detailed life history. It allows explanations of support that promote not only humanity and self evaluation but intimate sharing. Blogging has helped the author overcome many of her fears, capturing memories and a personal history file, “I forget, blog and it is always there”.

    Central to the author’s advocacy is the engagement of people with dementia who, she argues, are being left out of many of the conversations and events about them. Indeed, advocacy itself is an intervention about “owning your own life and helping someone else reclaim theirs”. For the author, who has been given the Prescribed Disengagement lecture, it is a reason to get up, a source of fulfilment.

    In closing, the author offers her own extensive activities as proof that people can live beyond the diagnosis of dementia.

    There is, of course, much more. This book is a record that needs to be read by anyone working with or associated with people with dementia and those around them.

    Phil Saunders
    Strategic Policy Engagement Consultant
    William, Robert and Grace
    Adelaide South Australia

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    • Thank you for your very generous review of my book Phil… and none out there reading this, please note, Phil is looking for a new job, and I’d highly recommend you contact him (even via me here) if you are looking for someone brilliant to work in policy (Phil – correct me, or add to this, if you need to!).

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  24. Dear Kate

    I write as a son of two parents both with early Alzheimer’s and as a Doctor who has been training in the field of functional and anti-aging medicine. I seek the opinion of those affected with the disease because there have been some major developments to my mind in small studies where 9/10 early Alzheimer’s and Mild Cognitive Impairment were reversed (not cured) by a Professor of Neurology using a non drug approach-he recently reported he is getting similar results in over 30 new patients. We now have to steer the muddy waters of science and ask exactly what should we do with this information? This is a very small sample but in view of the fact that until now no cases of reversal have been documented by a expert I believe it adds weight to the findings. Since it does not involve drugs I think its very unlikely further trials will go anywhere.

    Here is the link to the reversal research.. http://www.impactaging.com/papers/v6/n9/full/100690.html

    The first part is heavy science but if people read the stories and the protocols they will understand.

    Therefore I have been designing a program that can help people apply these protocols. Its not that hard but it is comprehensive and people need the help of a functional progressive doctor to help them prioritise the interventions based upon the results of a investigative work up. They also need the help of a health coach and behavior change program to motivate and support clients achieve the changes they need. Both my partner Miki and I are qualified health coaches.

    Miki and I are committed to sharing this knowledge and are holding a seminar in Manly on ,March 16th. Here is the link. http://brainmanly.eventbrite.com/

    I have spoken to the Alzheimer’s Association and am committed to monitoring all results we get with clients using these protocols for full transparency and to contribute to the wider learning.

    I look forward to you and your readers replies

    warm regards

    Dr Dave Jenkins

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    • Thanks Dave, and as we have already chatted via email, I’ll not reply further here. However, the Bredesen article is one I’ve been promoting since it came out, and soon, others will stop laughing at people like you and I… who believe in healthy lifestyle, and the occasional miracle!

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  25. I did hear your presentation in Gosford Leagues Club ( in August 2015) ….and you opened my eyes on many issues connected with dementia condition. After being redundant from my work, I started voluntarily work in Day Centre and study on MOOC “Understanding dementia” to be able to look after and make peoples live more comfortable and enjoyable . Thank you Kate you are remarkable lady. cheers Malgorzata (Margaret)

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  27. Hi Kate
    Is there any possibility that you maybe in Brisbane on Tuesday 13th October this year. I would like to invite you to speak at the Future Planning Forum. I have had the privileged of hearing you speak twice and you truly are inspiring. I will leave my contact details- look forward to hearing from you
    Regards Ann

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  28. Hello Kate,
    I was at the ADI conference in Perth a few weeks ago, and was most impressed and honoured and felt privileged to hear you speak and tell your story. Thank you so much for making me understand better what makes you tick and about challenges experienced as well as achievements recognised by being the first employee. Congratulations!!
    I was wanting to ask a favour: Firstly could I please use your poem in my UTAS essay when writing about Early Onset Alzheimer’s for Dementia Care Degree assignment, and secondly would you have access to any statistics or additional info I could use in regards to “Impact of EO on mainstream society”. (Or point me in right direction for info, please). Thank you so much Kate. Best wishes from Corry

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    • Hi Corry… firstly, thanks for the generous feedback, and for joining the conversation here. What poem are you talking about? Also, FYI, Early Onset is now referred to as Younger Onset Dementia (YOD = under 65 years of age) as anyone can be in the early stages of a dementia.

      Regarding stats or information specific to YOD, I’m not sure I can direct you anywhere, other then hat usual sites such as Alzheimer’s Australia and Alzheimer’s Disease International. You can find some info at the following sites that will include current stats and infographic on dementia:
      ADI – http://www.alz.co.uk/research/G8-policy-brief go to the bottom of the page to download
      WHO – http://www.who.int/mental_health/neurology/dementia/infographic_dementia/en/

      At the WHO Ministerial Conference on Dementia, they stated there are over 47.5 million currently diagnosed with dementia, and ADI state there is a new diagnosis somewhere in the world every 4 seconds. I believe the Australian figure that is one every 6 minutes, but not 100% that is current.

      The figures in Australia are over 344,000 people diagnosed with dementia, with over 25,100 of those people with YOD, which were the stats given recently at a Parliamentary summit, but probably on their website as well.
      Anyway, hope this helps. Cheers, Kate

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    • Hi Kate.
      Sorry to write this here.
      I hope you see this…
      I’m at a complete loss as to how to navigate in this page.
      How do I see your latest blog.
      I’m sorry I don’t know what to click on….
      Do I start by clicking “home” and then do something?
      Sorry…
      Steve…

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    • No stress Steve… I have emailed you so hope that helps. But, in case you don’t get it, if you go to the section of the website with the heading, hit the page that says BLOG, then scroll down to the latest one (which is not at the top, just to make it more confusing!)…. or you can Follow it, by adding your email to the blue FOLLOW button on the right hand side of the page. hugs to you both xox

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  29. Hi Kate,

    I just want to sincerely thank you for your efforts in writing your blog and encourage you in the incredible work that you are doing. You are shedding such light on this area and are an inspiration to many.

    I am in the beginning stages of implementing a new project – Recovery Approach to Dementia Care – in regional NSW, within a community setting. The Recovery Approach builds upon Person Centred Care and some of the core principles are inclusion and social access, redefining self outside of labels, strengths based, and fostering hope. This model has been used in the mental health setting for years. I believe that the health system in Australia can improve so much in relation to dementia care, both in policy and in practice. I hope that I too may be able to impact this positively as you are also doing – time will tell!

    Again thank you, you are helping to pave the way for the future care and support of many people living with dementia.

    Kind regards,
    Rachel.

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    • hopeful of course… but I remain sceptical. For example, at the WHO conference, it was confirmed (yet again) we are further away from a cure than we were ten years ago.

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  32. 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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  33. 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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    • hi Kate,

      You indicated that you would have a look at my blog at http://www.theagincanagin.com after the holidays and given your astute reference to terminology as it relates to people with dementia, I am (perhaps overly) keen to know how the material strikes you.
      I have had favourable, first hand reviews from health care professionals and caregivers, but needless to say, your thoughts would carry far more weight. Hence, the hope that you will forgive the possible over zealousness.

      thank you,
      Andrew

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  35. 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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  36. 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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  37. 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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  38. 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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  39. 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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    • Thanks Anne, mostly for doing the MOOC, as this means you are learning a lot about dementia, which can only mean better things for people with dementia. Take care…

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  40. 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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  42. I have just found your blog through Facebook -Younger Onset Dementia page. I have start a blog in June 2012 about my journey as the carer for my wife who has dementia.
    http://labtad.com/2012/10/06/june-2012/. On my next update I will post a link to your blog which I found to be very true and informative about the disease. Thank you

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  44. 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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  46. 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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  48. 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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  49. 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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  50. 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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  51. 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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  52. 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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  53. 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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  55. 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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  56. 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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  57. 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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  58. 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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  59. “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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  61. 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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  62. 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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  64. 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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  65. 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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  67. 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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  68. 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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  69. 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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  71. 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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  72. 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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  74. 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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  75. 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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  76. 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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  77. 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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  78. 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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  79. 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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