Dementia Activist: Fighting for Our Rights

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.

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.

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.