On 17 May 2022, Alzheimer Europe held an online session of its popular Alzheimer's Association Academy series, bringing together representatives of its member organisations, European Working Group of People with Dementia (EWGPWD) and pharmaceutical companies. The topic for this session, which was moderated by Iva Holmerová, Chairperson of Alzheimer Europe, was "Dementia as a disability. Helen Rochford-Brennan, who is a member of the European Working Group of People with Dementia (EWGPWD), as well as the Irish Dementia Working Group, began the session with some introductory remarks about the importance of taking a human rights-based approach to dementia. She noted that talking about dementia as a disability can be controversial and that some people do not want dementia to be recognised as a disability. It is therefore important, she stressed, that when we talk about dementia as a disability, it is about ensuring that the human rights of all people with dementia are respected - and recognising dementia as a disability can help with this.
Under the The United Nations Convention on the Rights of Persons with Disabilities (UN CRPD) dementia counts as a disability because it can cause long-term physical and sensory impairments, she noted. Framing dementia in terms of a disability is quite a new approach, she stated, insisting that it is a positive step and has helped lead to a great shift in public awareness, thanks to advocacy groups. “Our voices are powerful”, she said, “and if we are recognised as having a disability, we have more hope.” People with disabilities, including people with dementia, have the same legal rights as everybody else, but unfortunately, she said, many people with dementia are not aware of their rights or cannot access them. It is our duty, as advocates, to help them become aware of their rights and to understand their implications, she concluded.
Following these opening words, Dianne Gove, Director for Projects, Alzheimer Europe, gave a presentation on the implications of recognising dementia as a disability, for the fields of ethics, policy and practice. She began by stating that Alzheimer Europe has long recognised that impairments linked to dementia can lead to disabilities and that the work the organisation is doing in this area is building on work previously carried out by its ethics working group and the EWGPWD, the result of which was a 2017 discussion paper on the possible implications for ethics, policy and practice of recognising dementia as a disability: https://www.alzheimer-europe.org/reports-publication/2017-discussion-paper-possible-implications-ethics-policy-and-practice Her presentation explored what it means to recognise dementia as a disability, noting various models of disability, including the moral/spiritual model, the medical model, and the social model. The World Health Organization (WHO) describes disability as neither purely medical nor purely social and Dianne Gove also highlighted that there has now been more of a move towards taking a human rights-based approach to dementia. She also reminded delegates that it is not the fact of having dementia that means one has a disability, it is the experience of having certain impairments that lead to society disabling the person, through its actions, through language and stigma. She then then moved focus, to examine the implications of recognising dementia as a disability and highlighted that recognising dementia as a disability may have personal, social, ethical and policy implications. Regarding ethical implications, she noted that recognising dementia as a disability requires us to reflect on and find the right balance between ethical principles, values, related concepts and approaches. Echoing Helen Rochford-Brennan's words, she said that if/ when people with dementia experience disability, they should have the same rights as those afforded to other people with disabilities and that this includes the right to expect reasonable accommodations to be made i.e. equity, not just equality. Recognition of dementia as a disability can be beneficial in ensuring these rights and obligations are indeed the same, she said. In the final part of her presentation, Dianne touched on some of the difficulties encountered by people with dementia whose disability may be “hidden”.
The presentation concluded with a set of recommendations:
• Recognise that people with dementia do not constitute a single, unified group of people, do not all experience disability in the same way and do not all have the same goals; be sensitive to and respect people’s preferences regarding the use of the labels (e.g. ‘disability’ and ‘disabled’).
• Respect the right of every person with dementia to accept or refuse, partially or fully, disability as part of their identity.
• Avoid making it necessary for people to state that they have dementia or disability to access any support or care they may need; Aim to offer support and consideration in response to a specified, apparent or suspected need.
• Raise awareness about disability and dementia amongst the general public, policy makers, service providers and health and social care professionals. Challenge stereotypes.
• Focus on rights, equity, empowerment and inclusion.
The final talk was given by Marine Uldry, Human Rights Officer at the European Disability Forum (EDF) and focused on UN CRPD reports as opportunities to improve the lives of people with disabilities and dementia. In March 2022, the United Nations (UN) Committee on the Rights of Persons with Disabilities started its second evaluation of the protection of disability rights by the European Union (EU) - an important moment for the disability movement in Europe. The presentation walked delegates through this process, as well as EDF’s response. Marine Uldry shared what organisations can do to ensure the voices of those they represent are listened to, with regards applying the UN CRPD in countries across Europe. She explained what CRPD reporting is and to whom the reporting is done. All States that have ratified the UN CRPD are reviewed by the UN Committee on the Rights of Persons with Disabilities. Civil society, she said, and especially disability organisations representing people with any type of disabilities can (and should, she stressed) take part in the process, because a country’s report may not reflect the situation in that country in the same way that people with disabilities see it. It may be inaccurate and may lack information, for example concerning dementia. It is hugely important, therefore, to engage with the Committee and ensure they have the right information, and that they see it from the angle of the person with the disability.
There are different opportunities to engage and information can either be in written format (called an “alternative report”, submitted together as a disability coalition and/or as individual organisations), or it can also be delivered orally, during the Committee's two annual sessions in Geneva (including via video conference). EDF’s alternative reports give information to the CRPD Committee about how the EU implements the Convention. Its first alternative report was prepared for the first review of the EU in 2015. In February 2022, working closely with its members, including Alzheimer Europe, EDF submitted its alternative report for the 2nd evaluation of the EU, with a suggested list of questions. This second alternative report identified 17 main concerns, three of which are specific to people with dementia. Regarding next steps, the EU will have 12 months to respond and once the Committee receives a reply, it will schedule the “constructive dialogue” and adoption of Concluding Observations (probably in 2024). The EDF will engage in the second part of the process by preparing an updated report and participating in meetings with the Committee. Delegates were strongly encouraged to check the UN website to see if their own country has sent its report. Marine Uldry also referred to an EDF guide on engagement in the work of the CRPD Committee: https://www.edf-feph.org/publications/crpd-guide/
There was ample time for lively discussion and questions to the speakers, after which Iva Holmerová closed the session. The next Academy session is scheduled to take place online, on 12 July 2022.