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Dementia Activist Helga Rohra

Dementia Activist By Helga Rohra

Dementia Activist by Helga Rohra


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Summary

Helga Rohra turns dementia stereotypes on their heads with this candid memoir. Speaking about her diagnosis, day-to-day life and experience of advocacy, she proves that a dementia diagnosis doesn't mean you have to give up on life. With helpful advice and practical tips, this book is a testament to living well with dementia.

Dementia Activist Summary

Dementia Activist: Fighting for Our Rights by Helga Rohra

What's happening to me?'

Successful translator and linguist Helga Rohra was understandably good with words - that is, until she found herself getting in a muddle when she spoke. She started to forget the way home, even though she could remember her address. Her confusing symptoms increased and Helga was diagnosed with dementia at age 50 - but she hasn't let herself be labelled with the usual stereotypes.

With entertaining vim Helga shows that her life is still as abundant and self-determined as ever, dismantling the negative stereotypes that often surround a dementia diagnosis. She speaks frankly and with humour about her diagnosis and life with young onset Lewy Body Dementia. She explains the changes in her everyday life and the challenges she faces, and shares practical tips that prove it is possible to live well with dementia. Helga also talks about her activism work, which has made hers one of the key voices internationally in dementia advocacy.

Dementia Activist Reviews

Helga writes of the trauma of diagnosis, and seeking support. Yet her fighting spirit meant she became a great advocate for living positively with dementia. This book is a testimony to her amazing resilience, despite her daily battles with this invisible condition. Helga is a true dementia expert! -- Christine Bryden, author of Who Will I Be When I Die?, Dancing with Dementia, and Nothing About Us, Without Us!
Speaks truth to power: listen, learn, ACT! -- Professor Peter Mittler, CBE, Human Rights Advisor, Dementia Alliance International

About Helga Rohra

Helga Rohra worked as a freelance translator specialising in medical and scientific translations. Even before her diagnosis of Lewy Body dementia, she advocated for people with disabilities and dementia. She is Chair of the EWGPWD (European Working Group of People with Dementia) under the umbrella of Alzheimer Europe, Vice Chair of DAI (Dementia Alliance International), sits on the board of Alzheimer Europe, and is also the Chair of Trotzdemenz e.V. (a German organisation run by people with and without dementia to raise awareness of the condition). Helga lives with her son in Munich, Germany.

Falko Piest assisted Helga with writing this book. Falko Piest is an academic at Dementia Support Stuttgart.

Table of Contents

Dedication. Introduction. 1. Before the onset. 2. Summer 2008: There's something the matter with me. 3. Summer 2008: First visit to the doctor - Go for a walk. 4. Why is early onset dementia slow to be recognised? 5. Spring 2009: University hospital - Waiting and hoping. 6. The diagnosis - I feel as if I'm falling. 7. About Lewy Body dementia and how it has been for me. 8. Summer 2009: At rock bottom - and first aid from the Alzheimer's Society. 9. Doing battle with the bureaucrats. 10. Appointment for assessment. 11. Autumn and winter 2009: Helen Merlin - Speaking for myself. 12. Shame or difficulty in being open about the symptoms. 13. January 2010: THIS MAKES SENSE! - I step out of the shadows. 14. March 2010: Thessaloniki - on my own. 15. My everyday life and how I cope with it. 16. March 2010: I am elected to the board of the Munich Alzheimer's Society. 17. Spring 2010: The media. 18. Speaker at a congress on dementia: Why many people I speak to declare that I am well. 19. July 2010: At the golf course. 20. Why it's wrong to compare people with dementia to children. 21. Things that I would like people to do when interacting with people with dementia. 22. Invisible hurdles in everyday life. 23. Conferences - Talks - Events. 24. Visibility and the Dementia Card. 25. Mulling over my favourite topics. Acknowledgements. Afterword.

Additional information

NPB9781785920714
9781785920714
1785920715
Dementia Activist: Fighting for Our Rights by Helga Rohra
New
Paperback
Jessica Kingsley Publishers
2016-07-21
152
N/A
Book picture is for illustrative purposes only, actual binding, cover or edition may vary.
This is a new book - be the first to read this copy. With untouched pages and a perfect binding, your brand new copy is ready to be opened for the first time

Customer Reviews - Dementia Activist