Conflict of interest disclosure w Christine Bryden PSM, MBA, Grad. Dip. Past. Counsell., BSc. Hons w...

Conflict of interest disclosure

Christine Bryden PSM, MBA, Grad. Dip. Past. Counsell., BSc. Hons

Has no real or apparent conflicts of interest to report

I’m still here!

Christine Bryden

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!

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!

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!

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.”

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

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

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

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

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?

Restoring identity!

Sapporo music band Business cards Music Fun Travel Publicity People with dementia

reclaimed their role in society, with dignity and respect

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.”