“What the hell happened to my Brain?: Living beyond dementia”

Screen Shot 2015-12-21 at 8.39.58 amThe brief online introduction on The Book Depository says: “Kate Swaffer was just 49 years old when she was diagnosed with a form of younger onset dementia. In this book, she offers an all-too-rare first-hand insight into that experience, sounding a clarion call for change in how we ensure a better quality of life for people with dementia. Kate describes vividly her experiences of living with dementia, exploring the effects of memory difficulties, loss of independence, leaving long-term employment, the impact on her teenage sons, and the enormous impact of the dementia diagnosis on her sense of self. Never shying away from difficult issues, she tackles head-on stigma, inadequacies in care and support, and the media’s role in perpetuating myths about dementia, suggesting ways in which we can include and empower people with the diagnosis. She also reflects on the ways in which her writing and dementia advocacy work have taken her on a process of self-discovery and enabled her to develop a new and meaningful personal identity. Kate’s powerful words will challenge misconceptions about dementia, and open our eyes to new ways of supporting people with the diagnosis. A must read for people with dementia and their families as well as for professionals and carers.”

I have drawn on my own personal and professional experiences, and chosen to explore the daily challenges faced by those of us diagnosed with dementia. Challenging the notion of Prescribed Disengagement®™, my aim was to offer a fresh perspective on how to live beyond dementia, and how family, friends and dementia care professionals can more positively support people post diagnosis. As a retired nurse, I also have a unique set of eyes, as ironically, I worked in the first dedicated dementia unit in Adelaide in the 70’s. In 2014 I completed a Master’s of Science in Dementia Care, and in 2015, was winner of the International Dementia Leader Award, winner of the National Disability Award: Emerging Leader in Disability Award, and winner of the Bethanie Education Medallion. I was also a state Finalist in The Australian Of The Year Awards for 2016. I am co-founder, editor and Chair of Dementia Alliance International , a board member of ADI and become a member of the World Dementia Council in February 2016. I have included the Table of Contents below for anyone who wants a glimpse of what’s in the book. I am still waiting for my own copy…

Table of Contents

Foreword by Mr Glenn Rees, AM, Dr Shibley Rahman and the late Dr Richard Taylor, PhD.
1. Why me, why this, why now?
2. The early days.
3. So, what the hell did happen to my brain?
4. Illness, sadness and positivity.
5. The dementia train and not sweating the small stuff.
6. Thank you, Richard Taylor.
7. Reactions to dementia: Yours, mine, others’.
8. The burden of disbelief.
9. Being diagnosed with younger onset dementia.
10. Children of people with younger onset dementia.
11. Early vs delayed diagnosis.
12. Dementia, grief and loss: It’s very complicated.
13. The emotional toll of letting go.
14. Myths of dementia.
15. Loneliness and dementia.
16. Prescribed Disengagement(TM).
17. Dementia as a DisAbility.
18. Stigma and Dementia.
19. The language of dementia.
20. Dementia and word finding.
21. Employment and dementia.
22. Driving and dementia.
23. Family carers or BUBs (Back Up Brains).
24. Carers speaking out publicly about people with dementia.
25. Guilt.
26. Who’s got the challenging behaviours?
27. Interventions for dementia.
28. Blogging and writing as interventions for dementia.
29. Advocacy as an intervention for dementia.
30. Volunteering as an intervention for dementia.
31. Dementia-friendly/Accessible communities.
32. Human rights in dementia and aged care.
33. There is big money in dementia.
34. Nothing about us, without us…
35. Love, gifts, dementia and dying.
36. A final word in resilience and memory.
37. Proof that people with dementia can beyond a diagnosis of dementia.
Appendix 1: Dementia: A Brief Summary
Appendix 2: Resources

15 thoughts on ““What the hell happened to my Brain?: Living beyond dementia”

  1. I am sorry I did not get to speak personally to you in Chicago. I was there because of you. As a person who had a mother, father in law and now a husband all with D/A I have taken up the gontlat and we are helping to change things in our area by speaking up and out. You and so many others in Chicago are a force for change and I am so very proud of everyone of you for using your voices to bring about change! You all were HEARD.


    • Dear laurel, I am also so sorry we didn’t get to meet, especially now reading your comment. I was on the sick list on Saturday afternoon and for the whole of the Sunday, so missed giving my pown presentation, and the closing ceremony as well. Next time, we must make sure we connect. Our DAi team of presenters were truly awesome too, and I was so proud of them all. We are all beign hearad, and making a difference, as together, we are so much stronger. xx


  2. Pingback: We all die… |

  3. Hi Kate,

    I had an overwhelming need to write to you to let you know that your book has truly helped me as a care partner to my husband who has YOD. I wrote to you a few months ago telling you of my agonising decision to place him in a care facility at the age of 60. The struggle with this has been beyond words for me.

    I went to our local library to get your book. As they did not have it in stock, they ordered me a copy in.

    I could not put your book down, it has shown me a true insight into the nature of this disease for the person who copes daily with the challenges before them.

    I aways thought maybe I too could right a book, however now I feel more about being a voice for my darling husband within the environment that he now finds himself. I am truly looking out for him & in a most friendly manner trying to show the care-giving staff that their residents are “Real People” with “Real Feelings & needs just like them.

    When I returned your book to the library, the librarian said to me that I guess this is a book that you would maybe only every read once.

    I was so quick to voice my opinion about this & told her I was heading out to purchase the book as it was written by a woman with such knowledge & wisdom that I will forever be picking up your book to help me have more understanding, compassion, & raising more public awareness for the terrible stigma that follows this disease around.

    I think all care facilities & health care workers should be reading your book.

    I hope you are getting through each day with a little bit of sunshine in your life, as I am trying to do this for my husband.

    You are a true inspiration & I thank-you from the bottom of my heart.

    Take care



    • Dear Jean, Thank you for your incredibly generous words, and feedback on my book. It did, as I also emailed to you, bring tears to my eyes, and also my husband was deeply moved by your words as well. Take great care, and I know from your words, your love is strong and your will to ensure your darling husbands life living in residential care is as good as you can humanly make possible. All power to you and your love for each other. From the bottom of my heart also, Kate xx


  4. Absolutely great “CV” Kate!. PLEASE put the 2nd paragraph in your “About” link …. the one that staarts “I have drawn on my own personal and professional experiences ….”. I think it sums up so much of the expertise you have in speaking out for us!


  5. Congratulations Kate, however I have to say it’s unbelievable that you don’t have copies of your book – most unprofessional of the publishers I think. The author usually, in my experience receives advanced copies well before they are released for sale. Have you been told why this has happened?


You are very welcome to respectfully join this global conversation.

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

WordPress.com Logo

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

Google photo

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

Twitter picture

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

Facebook photo

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

Connecting to %s

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