Conflict of interest disclosure

1. Conflict of interest disclosure • Christine Bryden PSM, MBA, Grad. Dip. Past. Counsell., BSc. Hons • Has no real or apparent conflicts of interest to report

2. I’m still here! Christine Bryden

3. The first steps … • Paralysed by fear “things are in the unmaking”! • Wrote book about fear “Who will I be when I die?” • Free “to choose one’s attitude” • Met and married Paul • Together we could steer through troubled waters of dementia! • With his support, there was much I could do!

4. 10-year roller-coaster ride! • 2001 NZ plenary address • 2003 Talks around world • 2003 Elected to ADI Board • 2003 Started to focus on Japan • 2007 Retreated to delights of family • 2010 Inspired by ADI friends in Greece • “What doesn’t destroy me makes me stronger” • Famous people hold out the beacon of hope for creative suffering! • It’s not all downhill!

5. Kaleidoscope of past and present • without a future, resulting in anxiety and panic • past is cloud shifting to reveal memory • present is jagged flickering fragments • future blank sheet full of surprises • Life became dominated by mania and panic • had insight and took calmatives • Yet there are blissful moments of clarity with bursts of normality breaking through the fog!

6. DASNI made a difference • “It is by those who have suffered that the world has been advanced.” • “Alone we can do so little; together we can do so much.” • “Never doubt that a small group of thoughtful, committed citizens can change the world.”

7. The DASNI Effect -Client Survival Initiative! • Surviving and thriving • Proactive in advocating for social justice • Active supporters of each other through 3300 messages and 15000 hours of chat • DASNI effect shows it to be a CSI • not crime scene investigation of TV series but Client Survival Initiative • As clients of dementia research, services and support, we claim equal status with you as care-partners for all those with dementia

8. The prison of dementia • Courage to reject label of dementia • But reality of dementia imprisons us • We don’t know how long till it gets worse; it can’t get better. • “our inner life changes – we no longer live for the future, aiming for a goal. We remain in limbo, removed from normal life.” • It’s a continuing battle against rushing torrent of dementia • ongoing neuroplasticity

9. Up the escalator coming down! • Running up, still slipping back down • We keep firing, we keep wiring, but we also keep unwiring! • We’re hanging on much longer than expected, and have handed the baton to other experts coming after • “Nothing about us, without us!” • Our story of survival can inspire others being diagnosed today

10. ADI – the last decade • Much has changed! • From an empty shell we now have full participation • I’ve met people with dementia in quiet room from around world • We’re speaking out and being listened to • We’re included in governance and advisory capacities

11. Creating dementia-friendly society! • From “demented elderly” to … • “people with cognitive deficits” • Kyoto 2004: Mr Ochi spoke in public to around 4000 people • Government 10 year plan • One million trained supporters • Network of people with dementia • Meeting in March 2011 • Maybe DASNI Japan?

12. Restoring identity! • Sapporo music band • Business cards • Music • Fun • Travel • Publicity • People with dementia reclaimed their role in society, with dignity and respect

13. Time is running out! • Let’s make dementia a global health priority to address global health crisis • Let’s“go forward together with our united strength”and • find cures for diseases causing dementia • improve access to medication • improve services and support • create a dementia-friendly society • Let’s dream of a world free from all the diseases that result in dementia • “With this faith we will be able to hew out of the mountain of despair a stone of hope.”