The International Day of People with Disability (IDPwD) is a United Nations-sanctioned day, celebrated internationally on 3 December, with the aim to increase awareness of gains to be derived from inclusion of people with disability in every aspect of political, social, economic and cultural life. It is imperative that persons with dementia are included in these campaigns.
The theme this year is ‘Promoting the participation of persons with disabilities and their leadership: taking action on the 2030 Development Agenda’.
It focuses on the empowerment of people with disability for inclusive, equitable and sustainable development as anticipated in the 2030 Agenda for Sustainable Development.
We must ‘leave no one behind’
We must recognise disability as a cross-cutting issue, and
To celebrate the International Day of People with Disability this year, and as we work towards claiming our rights, alongside all other people with any disabilities, let’s watch the first DAI Side Event from the CoSP in June 2019 again.
It is imperative we all work towards ensuring that dementia is recognised by all as a condition causing acquired cognitive and other disabilities, and therefore one that people diagnosed with dementia must be provided with full and equal access to the CRPD and other Conventions, and to Universal Health Care.
We also wish to thank the United Nations and the World Health Organisation for supporting our event, and acknowledge our co sponsors, the Australian Government, the International Disability Alliance, Alzheimer’s Disease International, Human Rights Watch, the Global Rehabilitation Alliance and the World Hospice and Palliative Care Alliance.We also thank our two sponsors, Alzheimer’s Disease International and Boehringer Ingelheim.
We especially thank Ms Catalina Devandas Aguilar, the UN Special Rapporteur on the rights of persons with disabilities for her opening remarks, and all other speakers.
It was a rich discussion on dementia as a disability, on people with dementia as rights bearers, and of the rights of all, including people with dementia to rehabilitation and other services, and to full and equal access to the CRPD
The overarching theme was social inclusion and health, two determinants of well-being, both of which are being systematically denied to people with dementia all around the world. Dementia had never been represented formally in a Side Event ever before at the COSP, hence why DAI felt it was so important.
Our disabilities may be more invisible than many others, but we are still, even in 2019, being stigmatised and discriminated against on a daily basis, and we hope this event will be the start of change for the more than 50 million people currently living with dementia, and every person being newly diagnosed every 3.2 seconds.
As an organisation DAI intends to continue to work towards others joining our campaign that dementia is a condition causing acquired cognitive and other disabilities, and for full and equal access to the CRPD and other Conventions, so that no one is left behind, including people with dementia. Rehabilitation, and all other health and disability services and support are essential for maintaining independence and dignity, for longer, and whilst dementia is a terminal condition, we should not all be ‘dying at diagnosis’.
DAI Board member Christine Thelker was listed to make a Civil Society Statement on behalf of Dementia Alliance International and our Strategic Partners Alzheimer’s Disease International on Wednesday of this week during Round Table 2 of the 12thSession of the Conference Of State Parties on the Convention on the Rights of Persons with Disabilities, also the session being co-chaired by Kate Swaffer.
Round Table 2: Social Inclusion and the Right to the Highest Attainable Standard of Health
Read the full stament here which was prepared ij response to the theme of the session. Unfortunately the session was cut from 3 down to 2 hours, so she didn’t get to make the statement on the day. However, there was an opportunity to make a shorter verions of it at a Side Event yesterday, which we will share soon, including with a video of her speaking. The recording of our Side Event, Dementia: the leading cause of disability is also available online now.
Prepared Civil Society Statement:
Distinguished Chairs, speakers and delegates
Thank you for the opportunity to make this statement on behalf of Dementia Alliance International, the global voice of 50 million people living with dementia and Alzheimer’s Disease International today, who are our strategic partners.
As partnering international organisations, we collaboratively advocate for the rights of all persons with dementia and their families.
The 2030 Agenda sets out an ambitious goal vision to reach and empower those left behind.
As one of the 50 million people with dementia, I am being left behind.
Furthermore, women and girls are disproportionately affected by dementia. More women than men live with the condition, they provide the majority of care support and they also face the greatest stigma.
Women also make up 2/3 of dementia care supporters and more than 70% in lower and middle income countries. Older women, especially widows, can be exposed to what has been termed a ‘triple jeopardy’ discriminated against, as a result of their age, sex and condition.
I am here today to ask you to help me claim my rights as a person with disabilities to empowerment and social inclusion and the highest standard of universal health care.
Articles 19, 25 and 26 of the CRPD respectively address my rights to live independently in my own home in the community, without fear of being institutionalised and segregated, due to health and disability services and support not being in place to support me to live independently.
As a person with acquired cognitive disabilities that may cause communication, personality or other changes to my capacity to function without support, I demand my right to non-pharmacological support to live with a high quality of life, and am not chemically or physically restrained.
The lack of education and awareness of dementia of health care professionals and service providers, compromises my right and ability to access adequate services. Article 25 clearly states I must be able to access health care. Currently, people with dementia are being denied this.
Secondary to my dementia, as a person with younger onset dementia, I am being further denied support to live well in my community, support to maintain independence and access to health care.
It is therefore imperative we ensure health care providers are adequately educated in dementia, and those of us living with it are supported as people with cognitive and other disabilities to live a high quality of life in our community.
This is our fundamental right.
Governments, international civil society and partners around the world must get behind this global challenge and unite for a world where no one living with dementia is left behind.
Thank you for the opportunity to make this statement on behalf of Dementia Alliance International, a registered charity providing advocacy and support for people with dementia. We are also celebrating its 5th birthday.
Started in 2014 by 8 people with dementia including me, it has become the global voice of dementia.
We started with a dream, specifically for full and equal inclusion, and to be respected and valued as members of society. We also advocate for equal access to universal health care.
This has become our dream for the more than 50 million people with dementia, and each person newly diagnosed every 3 seconds.
That is also why DAI has organised a Side Event, taking place on Thursday morning.
No one and no organisation has ever represented people with dementia in this way, at this conference before.
Being diagnosed myself with dementia aged 49 taught me what the late Dr Martin Luther King Jnr.called ‘that sense of otherness’.
I had not been stigmatised or discriminated against, except as a woman.
I had not come from a deeply marginalised group.
However as one of the 50 million people currently living with dementia who’s life was thrown in the bin at the time of my diagnosis, and still experiencing stigmas and discrimination.
Dementia is a significant global issue; it is the 7th cause of death globally, the 5th cause of death in America, and the 2nd cause of death in Australia.
However, after a diagnosis, we do not receive access to universal health health care.
We do not receive post diagnosis rehabilitation or most other allied health services to support our independence or social inclusion.
We are segregated from others when we require assisted living.
We are institutionalised.
We are restrained physically and chemically, with no consideration of our rights.
In society, clinical practice is only provided, when supported by strong evidence based research.
However, the use of the concept Behavioural and Psychological Symptoms of Dementia (BPSD) was implemented, with no evidence based research was implemented.
This has lead to further chemical and physical restraint.
Secure dementia units, also a breach of many of our rights, including our right to freedom, are evolving into dementia villages, again with no evidence based research for their value.
Disease or disability specific villages are little different to ghettoisation of groups of people.
They are not a solution to those people with dementia who do need assisted living.
We are daily and systemically being denied our human rights.
Unfortunately, people with dementia who decide to manage their symptoms as disabilities and proactively seek disability support, are also often demonised for daring to live positively.
Approximately 5 years ago the Dementia Envoy for the World Dementia Council Dr Gillings said people with dementia may need to take to the streets and march on the steps of parliaments.
This is the beginning of that march, so that people with dementia are not left behind in the 2030 Agenda.
Chair, CEO & co-founder
Dementia Alliance International