Nothing about us, without us!

Including people with dementia

Christine Bryden (Boden)

DASNI

Self-advocacy by DASNI

• Started running in 2000

• Approached ADI in 2001

• Handed over the relay baton

• ADI must finish the race

What is our label?

• Dementia:– out of one’s mind

• The stereotype:– someone in the later stages

• The myth:– We all can’t speak– We all lack insight

The oppression of stigma

• Stereotype and myth leads to stigma

• Society can’t see the person within.

• Veil of stigma masks our potential and oppresses us

Stigma is a disease of society

• We are trapped within a web of stigma that– oppresses us, and

– casts a veil across our lives

• The greater the stigma– the more likely our “adaptive

behavior”

How can we remove the barrier?

• Stigma is a barrier– behind which we experience

loneliness

• We must address the stereotype and myth of dementia

• and focus on emotions and spirituality rather than cognition

Our invisibility makes the stigma worse

• When we are invisible– you believe that we are all alike

• When we become visible – we can seek a cure and

treatment.

• You can be our ally – believe in our potential,– you need us and we need you.

Run the race for us!

• We decline daily– we may not want to or be

able to be involved– but we want to be asked

• We need your help

• Be our ally– value us and give us our

dignity and individuality

Nothing about us, without us

• Use us as visible representatives of our shared cause.

• As we become more visible, the stigma will slowly disappear.