The Open-Ended Working Group on Ageing (OWEGA) came into existence through General Assembly resolution 65/182 on December 21, 2010. This group is tasked with examining the current global framework concerning the human rights of older individuals. Its primary objectives include pinpointing any existing gaps and determining effective strategies to address them.
Following Decision 13/1 at the thirteenth session of the Open-ended Working Group on Ageing, co-facilitators were tasked with proposing recommendations to address gaps in the international human rights framework for older persons. These recommendations, aligned with resolution 77/190, were slated for consideration at the fourteenth session and presentation to the General Assembly.
To aid this process, a comprehensive questionnaire was circulated to key stakeholders, including all UN Member States, General Assembly observers, A-status National Human Rights Institutions, NGOs with ECOSOC Status, and previously accredited organizations to the Working Group. The questionnaire aimed to identify gaps in the protection of older persons' human rights and explore effective solutions.
Dementia Alliance International (DAI) is a registered charity, holding ECOSOC status as a Disability Persons Organisation (DPO) at the UN. Our mission is to offer global support for individuals with dementia, advocating for services, improved quality of life, and the human rights of all people living with dementia, both in the community and in residential care.
Notably, DAI has contributed a submission to the Open-ended Working Group on Ageing, actively participating in the examination of the international human rights framework for older persons. DAI stands out as the sole NGO exclusively representing individuals diagnosed with with dementia globally. As individuals with disabilities, we assert our equal human and disability rights, including access to the Convention on the Rights of Persons with Disabilities (CRPD) and the Optional Protocol to the Convention Against Torture (OPCAT). In this capacity, DAI serves as a unique and global independent voice for people living with dementia, making a distinctive contribution to discussions on the rights and well-being of older persons.
In our submission to the Open-ended Working Group on Ageing, Dementia Alliance International (DAI) covered a range of valuable topics. These include:
Equality and Non-discrimination: As has been noted repeatedly, there is no specific reference in most of the international nondiscrimination guarantees to older age as a ground of prohibited discrimination; nor does the term “ageism” appear in the UN human rights treaties.
Violence, Neglect, and Abuse: Until older people including people living with dementia have access to the protection of an international treaty, we will continue to endure under-reported, under-acknowledged and under-actioned violence, abuse and neglect with little access to relief, justice or redress.
Long-term Care and Palliative Care: We note the United Nations Deinstitutionalisation Guidelines, which should apply equally to older persons, and the growing recognition in United Nations and international human rights systems of the need for equal access to justice and remedies for people with disabilities and older people.
Autonomy and Independence: The right to Supported Decision Making, to enable autonomy and independence is a key right that must be applied to older people. As with all adults, older people should have the right to make decisions about the care and services they receive, their day-to-day life and community connection, their relationships and the risks they are willing to take.
Education, Training, Lifelong Learning, and Capacity Building: While there is ample evidence to show that education and lifelong learning are a risk modifier for dementia, including as part of a specialised reablement program for people living with dementia, access to formal programs remains limited for older people.
Right to Work and Access to the Labour Market: Ageist attitudes, perceptions of increased risk, lower productivity and systemic taxation and social security structures which penalise older persons heavily for attempting to improve their quality of life and financial circumstances combine to create an almost impenetrable barrier for older persons to remain or reenter the workforce.
Access to Justice: There is a significant and longstanding problem of multiple harms to people living with dementia receiving care, and a failure to recognise, redress and repair the harm and hold people accountable for this harm.
Right to Health and Access to Health Services: Whilst the World Health Organisation defines dementia as a major cause of disability and dependence of older persons globally, people with dementia are not being adequately recognised or supported in post diagnostic pathways and care as people with acquired disabilities.
Social Inclusion: Institutionalised risk aversion and lack of understanding of the concept of ‘dignity of risk’ as well as flawed assumptions and erosion of personhood of the older person all contribute to the social, physical and emotional exclusion of the older person ‘in their best interests’. Protestations from the person living with dementia are labeled as ‘behaviours of concern’, and inability or unwillingness to accept their life incarceration, is further labeled and often results in further restriction of the older persons freedoms.
Accessibility, Infrastructure, and Habitat (Transport, Housing, and Access): Currently if an older person acquires a disability that requires complex care such as dementia or stroke past the age of 65, as previously explained their only realistic option is Residential Aged Care. DAI considers the withholding of disability support to older Australians in the community to be a breach of CRPD, however our human rights institutions are unable to take action on behalf of the 50% of older Australians living with disability who face a choice less future in an institution.
Participation in Public Life and Decision-making Processes: Currently there are few strategies in place to support the older person to participate fully in public life, however there are many barriers and impediments that can by systematically addressed that are covered in the preceding subjects such as access to transport, supported decision making etc.
These points collectively reflect DAI's commitment to addressing multifaceted aspects of the human rights framework for older persons and ensuring inclusivity and consideration for individuals living with dementia.
If you would like to read the full submission, you can do so on our website here.
In conclusion, Dementia Alliance International remains steadfast in its commitment to advocating for the rights of individuals with dementia. We believe in the principle of "nothing about us, without us." If you are a person living with dementia, we invite you to join our community. Your voice is crucial in shaping policies and ensuring that decisions about our collective well-being are made with us, not without us.