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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.

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I also 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 and their cultures, and to elders both past and present and emerging. Image source

Opinions in this blog, if authored by me, are my own.

Note, I might also change my mind on a topic tomorrow, if I read something, or experience something that encourages me to do so.

Blogs authored by others, including research articles, do not indicate my endorsement, merely my willingness to have other opinions here and provide a more diverse collection of thought.

Comments I have approved, also do not indicate my agreement or approval.

I will not allow all opinions here, if they are especially vindictive, hurtful or offensive, although have occasionally approved some that are.

But, please realise they do hurt and upset me and sometimes others, often. In an attempt to be fair to others, I still do approve many that have and continue to hurt my feelings.

Signing up to this site means you will receive the link to my daily blog straight into your email inbox. I will NEVER share or sell your information.

You might also like to visit my other websites Living Beyond Dementia™ and my recipe blog, In The Kitchen

Please note: your entries may be modified, and any inappropriate entries will be deleted. The primary purpose of my blog is to recall my thoughts and activities, but I want it to remain informative, inspired, and above all, honourable. Finally, I want it to reach out to you. I will always change any words that are offensive to others, especially those disrespectful to people with dementia.

No Medical Advice: Information and other content included on this Site 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. You should always consult a professional health care provider regarding any health or medical condition, prevention, or treatment. Do not delay or disregard seeking professional medical advice on account of something you have read on kateswaffer.com

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128 thoughts on “Home

  1. 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.

  2. 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

    • 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

  3. 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.

  4. 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…

  5. 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

  6. 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

    • 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!).

  7. 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

    • 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!

  8. 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)

  9. 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

  10. 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

    • 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

      • 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…

      • 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

  11. 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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