In this article, we provide more detailed information to add to the Written Statement submitted for the 2021 ECOSOC High-level Segment of the CoSP14, by Dementia Alliance International in consultative status with the Economic and Social Council.
Dementia Alliance International (DAI) is the global voice of people with dementiam and has been in existence since it launched on Jnauary 1, 2014. We were foudned by eitht peopel with dementia, from three countries. In our Written Statement, we also represented Alzheimer’s Disease International, the global voice for dementia, also one of our strategic partners.
The World Health Organisation, in its Global Action Plan for a Public Health Response to Dementia adopted in 2017 and has highlighted dementia as a condition causing disabilities and placed the human rights of people with dementia at the core, including implementation of rights through the Convention on the Rights of Persons with Disabilities (CRPD) with empowerment, inclusion and accountability as three of its seven cross-cutting principles.
These reflect the core elements of CRPD and all other Human Rights Treaties deriving from the UN Universal Declaration of Human Rights in 1948. This approach to human rights and the CRPD reflects the standard being advocated for at a global level by Dementia Alliance International and Alzheimer’s Disease International.
The COVID-19 pandemic has highlighted past injustices for the more than 50 million people living with dementia, through increasing the spotlight on the isolation, stigma, discrimination, and lack of equal access to Universal Health Coverage and post diagnostic care or support.
Dementia is a major cause of disability and dependence globally, yet people with dementia are still advised to go home and prepare to die, rather than provided the appropriate disability assessment or support afforded all others with disabilities.
Many Articles of the CRPD highlight further how people with dementia are being left behind.
The pandemic has created a human and social crisis of unparalleled scale, and the outbreak and its multidimensional influences have disproportionally affected persons with disabilities, including people with dementia, and especially those with pre-existing health conditions, people from low socio-economic backgrounds, those in low and middle income countries and those living in institutional settings such as nursing homes.
Enforced segregation and institutionalization continues, and many other breaches of human rights have been under the spotlight as never before.
Non-disabled people don’t talk about their ‘right to live independently and to be included in the community’, because their rights are not being denied, and the CRPD is meant to be an instrument to ensure the rights of people with disabilities.
Living independently and being included in the community are essential to quality of life and well-being of all, including of persons with disabilities.
In spite of the CRPD, many persons with disabilities experience discrimination and many other barriers and challenges on a daily basis without being able to enjoy these rights and freedoms. These have not only been highlighted by, but they have been worsened by the COVID-19 pandemic.
Article 1 – Eligibility
Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which, in interaction with various barriers may hinder their full and active participation in society on an equal basis with others.
From a human rights perspective, the biggest barrier is the ‘Iron Curtain’ that separates dementia from disability. This has led to the assumption that we are not included in CRPD and are solely a Health responsibility, rather than the joint responsibility of all government departments for the well- being of all their citizens.
This has led to persons with dementia being excluded by Member States from their implantation of the Convention and to the absence of evidence of the use of CRPD General Principles and Articles in the regional and national |Dementia Strategies launched by Member States who have ratified it.
Article 19 – Living independently and being included in the community
Living independently and being included in the community are essential to the well-being of persons with disabilities and living at home and in the community is not only the preferred choice of people with dementia but also an economic imperative for governments compared to costly residential care solutions. Yet, many persons with disabilities experience discrimination and numerous barriers, facing challenges on a daily basis without being able to enjoy these rights and freedoms. These have been exacerbated by the COVID-19 crisis.
With the adoption of the CRPD in 2006, the right to independent living and being included in the community was given legal recognition in the international normative frameworks as an essential part of the individual’s autonomy and freedom. The CRPD advanced a human rights-based approach to the disability inclusion in many spheres of life. Article 19 of the Convention recognizes the right of all persons, with or without disabilities, to live independently and be included in the community, with the freedom to choose and control their own lives.
It seeks to minimize abandonment, institutionalization and segregation in domestic settings through protective mechanisms and enabling environments for all.
Persons with cognitive disabilities caused by any type of dementia, especially those who are more advanced in the disease and who have very complex communication or personal care requirements, are frequently categorized as needing to live in institutional settings for their own safety and are being segregated. Their autonomy is ignored, and such reasoning conflicts with article 19, which stipulates the right to live independently and be included in the community to all persons with disabilities, regardless of their level of cognitive capacity, self-functioning or support requirements.
States Parties to this Convention recognize the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community, including by ensuring that:
19a. Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement.
19b. …access to in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community.
Article 25 – Health
The COVID-19 pandemic has caused unprecedented bias towards, as well as mistreatment or denial of medical treatment against people with dementia and other disabilities, through the withholding of medical and hospital treatment, including vaccinations.
25d. Require health professionals to provide care of the same quality to persons with disabilities as to others, including on the basis of free and informed consent.
25e. Prohibit discrimination against persons with disabilities in the provision of health insurance and life insurance…
25f. Prevent discriminatory denial of health care or health services or food and fluids on the basis of disability.
Article 26 – Habilitation and rehabilitation
- Enable persons with disabilities to attain and maintain maximum independence, full physical, mental, social and vocational ability, and full inclusion and participation in all aspects of life. To that end, States Parties shall organize, strengthen and extend comprehensive habilitation and rehabilitation services and programmes, particularly in the areas of health, employment, education and social services, in such a way that these services and programmes:
26.b. Support participation and inclusion in the community and all aspects of society, are voluntary, and are available to persons with disabilities as close as possible to their own communities, including in rural areas.
The road to a diagnosis of dementia can be a long, stressful, beset by unrealistic expectations, fears based on myth, unfounded hopes and certain confusion. We must change the approach of treating people with dementia as having lost capacity from the moment they are diagnosed; instead, it needs to be acknowledged that some people with dementia are now living 20 years and more beyond diagnosis and striving to live positively, not the life expectancy of 7 years as the current data reflects. We are not invisible; we are not children, and we will not be ignored or shunted aside.
It is our right – whether at home, on a bus, at a concert, a sports event, a restaurant, a doctor’s office to be treated with dignity and respect. We still count, we are loved, sometimes well-educated, verbose, funny, and above all human.
People with dementia are being left behind in the 2030 Sustainable Development Goals and the pandemic has significantly increased isolation and the violation of rights of persons with dementia.
They are also regularly excluded from many of the advocacy activities, or the global or national policy strategies wish as the development of National Dementia Action Plans to improve care and services for people with Non-Communicable Diseases (NCD’s) globally.
People with dementia need much more than inclusion, such as a seat at the table, or to be ‘given a voice’.
They need equal inclusion and full and equal access to the CRPD, like all others living with disabilities.
Information provided by Kate Swaffer, co-founder & CEO of Dementia Alliance International.