Tag Archives: Media Release

Media Release: Human Rights Watch

For Immediate Release

Australia: Inquiry into Rule Putting Older People at Risk
End Coercive Aged Care Practices; Ensure Supportive Intervention

(Sydney, August 19, 2019)

Australia’s parliament should scrap a new rule that allows nursing homes to overmedicate and restrain older people, a group of organizations working for older people’s rights in Australia said today. On August 20, 2019 in Sydney, the Parliamentary Joint Committee on Human Rights will hold a hearing on human rights concerns relating to the new rule. Human Rights Watch, Aged and Disability Advocacy Australia (ADA Australia), and others will appear.

The group includes ADA Australia, Capacity Australia, Dementia Alliance International, and Human Rights Watch.

“The Australian government rule is trying to regulate abusive practices that harm older people rather than prohibit them,” said Elaine Pearson, Australia director at Human Rights Watch. “The opening of a parliamentary inquiry into this matter is a critical opportunity to address the regulation’s serious shortcomings.”

In April, the Australian government introduced a new rule to regulate both physical restraints and overmedication, also known as chemical restraint, in aged care facilities. The use of physical or chemical restraints as punishment, control, retaliation, or as a measure of convenience for staff should be prohibited, in line with Australia’s international human rights obligations.

Authorities should instead make sure that any medical intervention takes place only with free and informed consent, and that medications are administered only for therapeutic purposes. The government should prioritize positive support and intervention for people with dementia, including in aged care facilities.

On May 23, Human Rights Watch sent a letter to the Australian parliament, urging its joint committee on human rights to move to disallow the Quality of Care Amendment (Minimising the Use of Restraints) Principles 2019.

In 2013, the United Nations Committee on the Rights of Persons with Disabilities criticized Australia for allowing practices that would subject people with disabilities, including older people with dementia, to “unregulated behaviour modification or restrictive practices such as chemical, mechanical and physical restraints and seclusion.” The committee called on Australia to end these practices.

In addition to the physical, social, and emotional harm for older people restrained with antipsychotic drugs, the use of such drugs in older people with dementia is also associated with a nearly doubled risk of death. It also limits their ability to eat, communicate, think, and stay awake.

“Older people in nursing homes are at serious risk of harm if this new aged care regulation is allowed to stand as is,” said Geoff Rowe, CEO at ADA Australia. “Australia’s parliament should act urgently to ensure that everyone, including older people, is free from the threat of chemical restraint.”

Human Rights Watch has documented the harm of overmedicating older people living in nursing homes in the United States.

For more Human Rights Watch reporting on older people’s rights, please visit:
https://www.hrw.org/topic/health/rights-older-people

For more information from Human Rights Watch, please contact:

In Sydney, Elaine Pearson (English): +61-400-505-186; or [email protected]. Twitter: @PearsonElaine

In New York, Bethany Brown (English): +1-212-377-9411, [email protected]. Twitter: @bethany_L_brown

For more information from Aged and Disability Advocacy Australia (ADA Australia), please contact:
In Brisbane, Nicola Rodrigues: +61-7-3221-2220; or[email protected]com.au

For more information from Capacity Australia, please visit:
https://capacityaustralia.org.au

For more information from Dementia Alliance International, please contact: In Adelaide, Kate Swaffer, Chair and CEO: [email protected] @KateSwaffer @DementiaAllianc

https://www.hrw.org/news/2019/08/19/australia-inquiry-rule-putting-older-people-risk-0

The Global Voices of Dementia: Resources for self-advocacy

July 16, 2019

The global voices of dementia self-advocacy

Dementia Alliance International (DAI), the Alzheimer’s Society UK,  and the 3 Nations Dementia Working Group (3NDWG) have worked in partnership to develop two resources to educate, inspire and empower more dementia self-advocates.

This project was initiated, to support others with dementia to not only be inspired, but to develop some of the skills to become self-advocates.

The project partners consulted with dementia working groups and individuals who are already active dementia advocates in different countries. This was done to identify the barriers to self-advocacy, which can include: confidence, accessibility, discriminatory language, stigma and lack of engagement from others. The project also identified existing resources to support dementia self-advocates and highlighted some of the gaps that exist.

Self-advocacy is about having a voice – being able to represent yourself and express your views and needs. Self-advocacy supports the human rights of people affected by dementia and also gives our movement a more powerful and united voice.  

As part of the project two resources were created:

Christine Thelker’s story

The first time I spoke publicly, I was nothing short of terrified, and totally lacking confidence in my ability. Living with dementia means your abilities change, your confidence plummets, and mostly due to how others treat you. So advocating and finding my voice, through DAI, I have blossomed, and I encourage others to get involved and use their voices, and taking part in this project was one way I can try to make a difference for others.

 After being diagnosed, and left with virtually no supports, other than ‘go home, get your affairs in order, or, get ready to die’, well, that wasn’t good enough for me. It took over a year for any support at all was provided. Luckily, I found my own support with Dementia Alliance International, which importantly, is an organisation run completely by and for people living with dementia. Being part of this project makes me hopeful that not only will we encourage more self-advocates, we will all start working together.

Hilary Doxford’s story

Back in 2012, I somewhat reluctantly ‘fell’ into self-advocacy and my participation grew from there. My initial worries and fears would have been reduced had I had access to the resources this project delivered. Six years on, I still find this information helpful.

I’m very pleased to have been involved in the development of these resources and very happy to see the advocacy knowledge and activity happening around the world being pulled together. I hope others find them as useful as I have. I hope they enable people thinking of self-advocating to go to places they never thought possible because everyone who speaks out makes a difference.

5 Top Tips from self-advocates

 “Don’t be afraid of your symptoms it does really legitimize what you’re trying to present if people do see that you do have some of the symptoms with the dementia” Dennis Frost, Australia

“Humour makes up for all the fumbles we make along the way and just, you know, I talk from my heart – so that’s probably the biggest piece is you have to talk from your heart .” Christine Thelker, Canada

“Be true to your experience, who you are and your voice. The rest will follow from there.” Kris McElroy, USA

“To someone who is thinking should I advocate or shouldn’t I – try it and see!” Agnes Houston, Scotland.

“The first few times that you speak out publicly you’re terrified of not remembering what you want to say but then you find out every speaker is the same and that even people without dementia are like that.” Kate Swaffer, Australia.

For more information or support, or to get involved with local or global advocacy, contact the project partners for more information:

The inspiration for this project evolved from conversations between Kate Swaffer from Dementia Alliace International (DAI) and Amy Little from The Global Alzheimer’s & Dementia Action Alliance (GADAA), after conversations on how to better support capacity and abilities inDAI members, all who are  people diagnosed with dementia, who have not only lost, but are continuing to lose some abilities.

With the appropriate support, it is very evident people with demenia can still, and do, live very meaningful lives, for much longer than told to expect, if diagnosed in the earlier stages of dementia.

By working together, the impact of self advocacy makes a much bigger difference.

Global self-advocates who feature in the film and supported the project (Left to Right): Amy Su, Dennis Frost, Kate Swaffer, Kris, Christine Thelker, Agnes Houston, Hilary Doxford, Petri Lampanen and Veda Meneghetti.

 

 

 

Media Release

November 28/29, 2018

Dementia Australia and Dementia Alliance International to globally champion rights of people living with dementia. Dementia Australia has formalised its relationship with Dementia Alliance International and today signed a new memorandum of understanding (MOU).

Dementia Australia CEO, Maree McCabe said the MOU recognises both organisations are aligned in their purpose to promote awareness and understanding of dementia and to advocate for the autonomy, independence and human rights of people living with dementia.

“We share a commitment and vision for a world where people living with dementia are valued, included and receive the care and support they choose,” Ms McCabe said.

Dementia Alliance International Chair, CEO and Co-founder, Kate Swaffer said the organisations would advocate together to expand the awareness and understanding of dementia across the aged care, disability and health care sectors in Australia and on the world stage.

“Together we will liaise on global dementia policy issues, to ensure our policies and programs are aligned to the WHO Global Dementia Action Plan” Ms Swaffer said.

Dementia Alliance International is the peak organisation with membership exclusively for people with a medically confirmed diagnosis of any type of dementia from all around the world.

“As the global voice of dementia, Dementia Alliance International provides a platform for the many people living with dementia who are capable of representing themselves, or speaking up for those who are no longer able to,” Ms Swaffer said.

“We have members in 48 countries, and self-advocacy is becoming a strong focus, where we work with members of Alzheimer’s Disease International, such as Dementia Australia, to empower others to have a voice.”

Worldwide it is estimated there are 50 million people living with dementia. This number will almost double every 20 years, reaching 131.5 million in 2050.

“According to Alzheimer’s Disease International research, someone in the world develops dementia every three seconds,” Ms Swaffer said.

Dementia Australia is the national peak body and charity for people of all ages, living with all forms of dementia, their families and carers. Dementia Alliance International is the global peak body representing people with dementia.

“Dementia Australia is the first national dementia association to partner with us, and DAI is very proud to be more formally working with them,”Ms Swaffer said.

“It is a natural fit for the two peak bodies to work together to promote awareness and understanding of dementia,” Ms McCabe said.

For further information visit the Dementia Australia website at www.dementia.org.au or Dementia Alliance International at https://www.infodai.org.

Dementia Australia is the national peak body and charity for people, of all ages, living with all forms of dementia, their families and care partners. It provides advocacy, support services, education and information. An estimated 436,000 people have dementia in Australia. This number is projected to reach almost 1.1 million by 2058. Dementia Australia’s services are supported by the Australian Government. www.dementia.org.au

Dementia Alliance International(DAI) is a collaboration of individuals diagnosed with dementia providing a unified voice of strength, advocacy, and support in the fight for individual autonomy for people with dementia. The aim is to bring the community composed of those with dementia together as one strong voice to urge the government, private sector, and medical professionals to listen to our concerns and take action to address this urgent global crisis. It is our firm belief that working together, we will identify concrete action for implementation with the international community, and in the process, ensure our human rights are being fully met. DAI is a registered charity in the USA, and the global voice of dementiahttps://www.infodai.org

Dementia is a Global and National Health Priority Area 

Media contacts: Louise Handran [email protected] +61 490 128 304 / Kate Swaffer [email protected]

When talking or writing about dementia please refer to Dementia Language Guidelines.

Image: Ms Maree McCabe, CEO, Dementia Australia and Ms Kate Swaffer, CEO, Dementia Alliance International, signing the Memorandum Of Understanding (MOU)

 

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DAI Media Release

The human rights of people living with dementia: from Rhetoric to Reality

Dementia Alliance International is proud to be launching its first official publication to coincide with the adoption by Alzheimer’s Disease International of a Human Right based approach, and to coincide with Dementia Awareness Week UK 2016. With input from our Human Rights Advisor Professor Peter Mittler, and other experts, we hope this guide will educate and support the activities of individuals and organisations, and will be the beginning of real change.  We have had much rhetoric and agreement that we have human rights; now we want real action.

Media Release:

There are currently more than 47 million people with dementia globally and one new diagnosis every 3.2 seconds[i]. There are 850,000 people in the UK who have a form of dementia[ii], more than 5 million[iii] in America, and more than 353,800[iv] Australians with dementia in Australia.  If dementia were a country, it would be the 18th largest economy.

Dementia Alliance International (DAI) is an advocacy group, the peak body and global voice of people with dementia. Our mission includes Human Rights based approaches that are applied to the pre and post-diagnostic experiences of people with a dementia, in every way. We advocate for a more ethical pathway of support that includes our human right to full rehabilitation and full inclusion in civil society; “nothing about us, without us.”

“We are launching this landmark Dementia Alliance International guide because, as a direct result of DAI’s advocacy and a rights-based approach including access to the United Nations Convention on the Rights of Persons with Disabilities (CRPD) has just been adopted by Alzheimer’s Disease International. This is a watershed moment for people with dementia across the world.”  Kate Swaffer

The human rights of people with dementia lie at the heart of our work. Access to the UN Disability Convention was one of the demands made by DAI’s Chair, Kate Swaffer at the World Health Organisation’s First Ministerial Conference on Dementia held in Geneva in March 2015. Since then, we have done everything we can to make a reality of that demand.

“What matters to us now is that people living with dementia should be empowered to use their undisputed right of access to this and to other relevant UN Human Rights Conventions, including a future Convention on the Rights of Older Persons.” Professor Peter Mittler

You can download a copy of our publication here: Human Rights for People Living with Dementia – Rhetoric to Reality

You can view a video of Kate Swaffer and Peter Mittler introducing the need for a human rights based approach to dementia at the recent ADI Conference in Budapest here:

Membership of DAI is exclusive to people with a medically confirmed diagnosis of dementia; to join our exclusive club or to join a support group, visit us here www.joindai.org.

Contact details

Contact Kate Swaffer for more information or read more about the work of Dementia Alliance International here.

Follow us on @DementiaAlliance

Kate Swaffer, Chair, CEO, Co-founder of Dementia Alliance International and author of What the hell happened to my brain?: Living beyond dementia, published on January 21, 2016.

References

[i] World Health Organisation, Dementia Statistics (2015) http://www.who.int/mediacentre/news/releases/2015/action-on-dementia/en/

[ii] Alzheimer’s Association, (2016). 2016 Alzheimer’s Disease Facts and Figures. http://www.alz.org/facts/overview.asp

[iii] Alzheimer’s Society UK (2014). Dementia 2014 report statistics, https://www.alzheimers.org.uk/statistics

[iv] Alzheimer’s Australia (2016) Key Statistics, https://fightdementia.org.au/about-dementia/statistics