This document summarizes key events and initiatives related to dementia awareness and advocacy from 2014 to 2016, including the formation of organizations that support and are led by people with dementia. It highlights efforts to recognize the human rights and lived experiences of those with dementia, rather than seeing only their deficits. These include online support networks in 2014, a call for a human rights approach to dementia in 2015, and the inclusion of those with dementia in disability awards and leadership councils in 2015 and 2016.

1. Alzheimer’s Scotland National Conference
Dementia Awareness Week 2016
global to local: research, practice, innovation
3 June 2016

2. Many people only see the
missing bit(s)

5. We are mothers, fathers,
lovers, daughters, wives or
husbands, employees or
employers, friends,
grandmothers, aunties…
It is a tragedy that so many only see our
deficits.

6. My Unseen Disappearing World...
It’s looks like a swan, calm and serene on the
surface, paddling furiously below to stay afloat.

7. Language matters
Please always refer to the
DEEP Words Matter or the
Alzheimer’s Australia
Dementia Language Guidelines

8. People with dementia are
NOT the ones with the most
challenging of behaviours

9. 2014: Support for people with
dementia, by people with dementia
 Exclusive membership
 Weekly online support groups
 24/7 chat rooms
 Monthly online cafes
 Monthly webinars
 Master classes
 http://www.infodai.org
 http://www.joindai.org

10. 2015: Demand for a Human Rights
approach to dementia globally
1. We have human right to a more ethical pre and post diagnosis
pathway, including rehabilitation.
2. Being treated with the same human rights as everyone else,
under the Disability Discrimination Acts and UN Convention on
the Rights of Persons with Disabilities
3. Research that focus on care as much as a cure.

11. 2015: Dementia appropriately
recognised in disAbility awards

12. 2016: World Dementia Council
appropriately includes
two people with dementia

14. 2016: The release of
Dementia Alliance
International’s
Human Rights
Publication during
DAW2016 in the UK
is a milestone for all
people with
dementia around
the world.

16. THANK YOU
Thank you
@KateSwaffer
http://kateswaffer.com
http://www.infodai.org
kateswaffer@infodai.org