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What the Hell Happened to My Brain?: Living Beyond Dementia

by Kate Swaffer Jessica Kingsley Publishers
Pub Date:
Pbk 392 pages
AU$37.99 NZ$40.86
Product Status: In Stock Now
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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.

Acknowledgements. Foreword by Glenn Rees. Foreword by Dr Shibley Rahman. Introduction. 1. Why me, why this, why now? 2. The early days. 3. So, what the hell happened 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. 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. Behavioural and psychological symptoms of dementia (BPSD). 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 live well. Appendix 1: Dementia: A Brief Summary. Appendix 2: Resources. References.

Laura Venables, who works on the Society's Engagement and Participation programme, was fascinated by Kate's account of 'prescribed disengagement'. This is how Kate describes the advice she says she was given - but ignored - to withdraw from her life and work after she was diagnosed. Laura says, 'Kate challenges the assumptions that are continuously brought out to define living with dementia. 'She openly illustrates her experiences of striving to continue life as she lived it the day before she was diagnosed, and of all the opportunities that she has become involved with since diagnosis - it's exciting stuff!'
Kate Swaffer commenced her professional career as a nurse specialising in dementia and aged care. Following her diagnosis of younger onset dementia, she completed a BA in Writing and Creative Communications, a Bachelor of Psychology and a MSc in Dementia Care at the University of Wollongong, Australia. She now works as an advocate and activist for dementia and aged care, has published many articles and a book of poetry and has presented nationally and internationally on dementia.