As Dementia Alliance International participates in another International Day of People with Disabilities, we ask for equitable inclusion, in all matters about us. We devote this article to equitable inclusion, and to dementia as a condition causing acquired, and progressive disabilities. 

The International Day of People with Disability #IDPwD is held on 3 December every year and is a United Nations observance day aimed at increasing public awareness, understanding and acceptance of all people with any type of disability. 

Each year the UN announces a theme to observe for International Day of People with Disability, which provides an overarching focus on how society can strive for inclusivity through the removal of physical, technological and attitudinal barriers for people with disability. This has been occurring since 1992 when the General Assembly announced 3 December as the International Day of Disabled Persons.

The theme of the 2024 International Day of Persons with Disabilities is: "Amplifying the leadership of persons with disabilities for an inclusive and sustainable future". This confirms why we need more people with dementia to be employed and equitably engaged – and INCLUDED - in all things about them.

Inclusion

To date, people with dementia are frequently denied the right to full and equal participation. This was exposed by Kristina Chelberg and Kate Swaffer (Kate is a co-founder of DAI), who examined the Interim and Final Report from the Australian Royal Commission into Aged Care Quality and Safety (RCAC). The RCAC did not include one first-person voice of a person WITH dementia who themselves lived in residential aged care in Australia. 

Their article " Missing Persons": Absent Voices of People with Dementia in the Australian Royal Commission into Aged Care. “argues the voice of people with dementia was missing from the Australian Royal Commission into Aged Care Quality and Safety (RCAC) Final Report. This absence was notwithstanding that the RCAC was explicitly tasked to inquire into dementia care. The RCAC Final Report is shown to marginalise the perspective and experience of people with dementia in the aged care system at the same time as prioritising substitute voices of experts, advocates, family and care partners.”  See below ⇓ for more details including the full abstract for their article.

Exposing the harms and challenges of exclusion is not enough. 

Change is essential. 

Action is critical.

Dementia and Disability

Action is important because not only is dementia a chronic, progressive and terminal condition, it is a major cause of disability. 

There are an estimated 57 million people with dementia globally (Lancet, 2019), almost 10 million new cases per year, and unpaid family members or care partners average 5 hours per day providing unpaid care (WHO). The WHO also confirm that people with dementia are frequently denied the basic rights and freedoms. There are also over 41 million people with dementia, without a formal diagnosis (ADI, 2020). 

The word Dementia is just an umbrella term for more than 150 types or causes of dementia, of which Alzheimer’s Disease is the most common.  There are still no curative or disease modifying drugs, although some treatment for some types of AD, with only modest short term benefits. Of course, people with dementia must be included in the 2030 Sustainable Development Goals including Universal health for all.

However, beyond access to health, as people with disabilities, we have the same rights as all other people with disabilities under the Convention on the Rights of Persons with Disabilities (CRPD). International human rights foundations apply to all people with a disability. Hence, this must include people with dementia.

The adoption of the Convention on the Rights of Persons with Disabilities (CRPD) in 2006, includes the right to independent living and being included in the community, and was given legal recognition in the international normative framework as an essential part of an individual’s autonomy and freedom. The CRPD was meant to advance a human rights-based approach to the disability inclusion of all people with disabilities. In many spheres of life recognizing the right of all persons, with and without disabilities, to live independently and be included in the community, with the freedom to choose and control their own lives, and to be free from all forms of coercion, violence and torture. The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) is important because it is a legally binding agreement between a country and the United Nations that sets out a pathway for that country to improve the lives of people with disabilities by making sure that their human rights are realized. 

Unfortunately, whilst ever people with dementia are not only informed at the time of or soon after their diagnosis that dementia causes disabilities, but are then denied proactive disability support including access to rehabilitation, their rights continue to be denied.

Not to provide disability support soon after diagnosis, is akin to expecting a person without legs to walk up the stairs. 

Title

"Missing Persons": Absent Voices of People with Dementia in the Australian Royal Commission into Aged Care.

Authors 

Chelberg, Kristina; Swaffer, Kate

Abstract

This article argues the voice of people with dementia was missing from the Australian Royal Commission into Aged Care Quality and Safety (RCAC) Final Report. This absence was notwithstanding that the RCAC was explicitly tasked to inquire into dementia care. The RCAC Final Report is shown to marginalise the perspective and experience of people with dementia in the aged care system at the same time as prioritising substitute voices of experts, advocates, family and care partners. This absence of voice repeats and re-inscribes framing of people with dementia as "missing persons". Where people with dementia face practical and legal barriers to participate in civic and legal processes, the RCAC failed to adjust its methodologies to ensure their voices were "heard". The RCAC's re-inscription of marginalisation of people with dementia raises concerns for the legitimacy and success of its recommendations for dementia aged care reform.

Chelberg, K. and Swaffer, K., 2023. " Missing Persons": Absent Voices of People with Dementia in the Australian Royal Commission into Aged Care. Journal of Law & Medicine, 30(3).

Ps. You can contact Kate for a copy of the full article if you are unable to access it.

🌟 About DAI

Dementia Alliance International (DAI) is a global advocacy and support organization led by and for people living with dementia. Our mission is to empower individuals with dementia to live with dignity, purpose, and support through peer-to-peer connections, education, and advocacy. Read more here. 

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