The Power of Language Kate Swaffer

Person Centred Approach: From Philosophy to Practice

7 October 2014

Author, Poet, Advocate, Speaker, Blogger

Volunteer, Wife, Mother, Daughter, Friend Consultant, Alzheimer’s Australia

Living well with, and refusing to be defined by dementia Master’s of Science in Dementia Care: Current Student UOW

BPsych, BA, Chef, Grad Dip Counselling, RN Chair, Alzheimer’s Australia Dementia Advisory Committee

Co-Chair, Alzheimer’s Australia Consumer’s Dementia Research Network Co-founder, Board member, Secretary & Editor, Dementia Alliance International

My life was and still is interesting, busy and very fulfilling.

Why speak out? • To understand the human cost of dementia

• Break down the myths, discrimination and stigma

• Expert by experience

• So others can walk in my shoes

• Nothing about us, without us

• To educate and raise awareness

Language is a powerful tool.

Our words do reflect our

thoughts and feelings, and can show respect or disrespect.

(Sabat 2001; Parker 2001; Hoffert 2006)

‘When your child is no longer a child, you will have to find a new language’ (Fossum, K 2003, don’t look back, p. 108)

dementia dɪˈmɛnʃə/ Noun Medicine noun: dementia 1. a chronic or persistent disorder of the mental processes

caused by brain disease or injury and marked by memory disorders, personality changes, and impaired reasoning.

Synonyms: mental illness, madness, insanity, derangement,

lunacy, senile dementia, Alzheimer’s, Alzheimer's disease

(Source: Google)

disabled dɪsˈeɪbld/ adjective: disabled 1. (of a person) having a physical or mental condition that limits

their movements, senses, or activities. Synonyms: having a disability, wheelchair-using, paralysed. Offensive: retard, retarded, tard, handicapped, impaired, crip,

cripple, lame.

(Source: Google)

Is language important? • It defines the way others see us

• It allows others to communicate with us

• It defines the way we view ourselves

• It allows us to communicate with others

• It can impact stigma and discrimination

Stigma

Language and stigma

Language in the workforce The most fundamental skills required in any organisation are language, literacy and numeracy. They enable us to: • Process information • Communicate effectively • Contribute to productivity and performance • Enjoy socialisation and team building and our general ability

to enjoy our job and work environment • Builds confidence • Builds the ability to adapt to our changing environments

Language and dementia • People with dementia continue to be labelled as

‘challenging behaviours’, by people without dementia, in ways that continue to marginalise and stigmatise us

• This may seem simple semantics to someone without dementia, but it feels personal and important to me

Language and the media • The media continues to stigmatise and labels us with

devaluing and negative language

• Journalists mostly refuse to engage in debate with people with dementia regarding respectful language

• The media refuses to view the word suffering in the same way they view the word retarded

• Many refuse to refer to the latest language guidelines

Language in research

• The language in research continues to label us negatively, further exacerbating the stigma

• It this what is effecting knowledge translation into better practice?

Language in health care

• Medical benefits require the use of certain labels to provide certain payments

• Health care workers continue to use negative labels that dehumanise people with dementia

• This continues to stigmatise people with dementia

Will changing the

model of care

currently used

in dementia,

change the narrative

of dementia?

Language matters

• Suffering from dementia

vs

• Diagnosed with dementia

Alzheimer’s Australia Language Guidelines 2014

https://fightdementia.org.au/sites/default/files/language%20guidelines.pdf

Thank you

@KateSwaffer http://kateswaffer.com

https://www.facebook.com/kate.swaffer http://www.dementiaallianceinternational.org

Albert Einstein