Kate Swaffer

Chair, CEO & Co-founder, Dementia Alliance International

PhD Candidate, University of Wollongong Author, Activist, Speaker

SA 2017 Australian Of The Year

Global Dementia Statistics

• > 50 million people in the world diagnosed (WHO, 2017)

• 400,000 people with dementia in Australia (Alzheimer’s Australia, 2017)

• 1 new diagnosis globally every 3.2 seconds (WHO, 2015)

• 1800 new diagnoses per week in Australia Australia (Alzheimer’s Australia, 2015)

• More than 100 types or causes of dementia

• Alzheimer’s Disease makes up 50-70% of all dementias

• Dementia is a terminal, progressive chronic illness

• No cure, some treatment for some types of AD

Dementia: it’s complicated

Risk Reduction Factors

• Lifestyle factors

–Manage obesity, Blood Pressure, Cholesterol, Diabetes, and healthy diet

• Physical exercise

• Mental exercise, specifically new learning

• Reduce isolation

• Give up smoking, reduce alcohol (Alzheimer’s Australia 2016, Alzheimer’s Society UK 2016)

Why I speak up

• Expert of the lived experience

• So others can walk in our shoes

• To educate and raise awareness

• To stop Prescribed Disengagement

• To understand the human cost of dementia

• Break down the myths, discrimination and

stigma

• To improve the care, wellbeing & QoL for people

with dementia and their families

• There should be nothing about us, without us

You may be wondering…

What did happen to my brain?

Atht X

Taht X

That √

Sadly, many only see the missing pieces

“But mum… Isn’t that a funny old persons’ disease?” (Charles, 2008)

I know I am losing you and I am afraid of what the future holds.

(Peter Watt, 2011)

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.

WHAT IS WORSE THAN ONLY SEEING OUR DEFICITS?

NOT BELIEVING US…

WHEN WE LIVE WELL

The darker side of living beyond dementia

of the future of dementia care?

Human rights

On December 10, 1948 the Universal Declaration of Human Rights was adopted by the General Assembly of the United Nations “

The 1948 Convention was (still is) meant to protect every single member of civil

society in the world… Including people diagnosed with any

type of a dementia, and who have disabilities caused by the symptoms of

their dementia.

In 2015 the Organisation for Economic Co-operation and Development (OECD) report Addressing Dementia: The OECD Response concluded:

Very distressingly, but not at all unsurprising to those of us who are consumers,

67 years later…

“Dementia receives the worst care in the

developed world.”

(OECD, 2015)

Prescribed Disengagement®

What is it? • Dementia is the only illness I know where people are told to

get acquainted with aged care, get their end of life affairs in order, and go home and ‘live’ for the time they have left.

What’s the cost? • Hopelessness for those diagnosed and our families

• Person with dementia assumes victimhood, and is further disabled and disempowered

• It promotes learned helplessness in the PWD

• Carer can assume the martyr role, with all the power and control

Treat the symptoms of

dementia as

disAbilities

PEOPLE WITH DEMENTIA HAVE A HUMAN RIGHT UNDER THE UNITED NATIONS

CONVENTION ON THE RIGHTS OF PERSONS WITH DISABILITIES (CRPD)

To change how we reduce the economic burden and human cost of dementia globally we must

manage the symptoms of dementia as disAbilities,

in the same way any other person living with a disAbility expects. It’s our human right.

Supporting dementia symptoms as disAbilities

• Assist us to remain engaged with our pre-diagnosis life, rather than Prescribe Disengagement

• Provide authentic rehabilitation

• Focus on assets, abilities and interests of the person, not deficits

• Focus on dementia enabling environments

• Dementia accessible/inclusive communities

• Manage risk rather than eliminate it

• Promote community and social inclusion

Many clinicians and researchers around the world, not just people with dementia, now

believe even the ‘well-meaning’ term BEHAVIOURAL AND PSYCHOLOCIAL SYMPTOMS OF DEMENTIA (BPSD) and the labels within this

framework used in dementia care are doing more harm than good…

Chemical and Physical Restraints must STOP

Language is a powerful tool

“Our words do reflect our thoughts and feelings, and can show respect or disrespect;

they also show how others feel about us.”

(Sabat 2001; Parker 2001; Hoffert 2006)

Words do matter

•Suffering from dementia ✖

(disempowering, disabling, disrespectful)

vs

•Diagnosed with dementia ✔

(empowering, enabling, respectful)

ALZHEIMER’S AUSTRALIA DEMENTIA LANGUAGE GUIDELINES 2014

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

Dementia Alliance International

• A global advocacy and support group, of, by and exclusively for people with dementia, the global voice of, and advocating for the needs of people with dementia.

• Over 3000 members, in 39 countries

• In collaboration with Alzheimer’s Disease International, Dementia Alliance International is the peak body globally for people with dementia.

2014: DAI - Support & Advocacy group, of by and for 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

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.

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

10 Dignity in Care Principles

1. Zero tolerance of all forms of abuse 2. Support people with the same respect you would want for yourself

or a member of your family 3. Treat each person as an individual by offering a personalised

service 4. Enable people to maintain the maximum possibly level of

independence, choice, and control 5. Listen and support people to express their needs and wants 6. Respect people’s privacy 7. Ensure people feel able to complain without fear of retribution 8. Engage with family members and carers as care partners 9. Assist people to maintain confidence and a positive self esteem 10. Act to alleviate people's loneliness and isolation.

SA Health, 2014, Dignity in Care, http://www.sahealth.sa.gov.au/wps/wcm/connect/public+content/sa+health+internet/clinical+re

sources/clinical+programs/dignity+in+care.

20 things not to say or do to a person with dementia…

Thank you

@KateSwaffer

http://kateswaffer.com

https://livingbeyonddementia.com

http://www.infodai.org