Trinity hosts Symposium on Dementia and Human Rights
Posted on: 12 November 2019
A Symposium on Dementia and Human Rights took place this week organised by the School of Social Work and Social Policy. The Symposium brought together international and national experts to discuss framing dementia as a disability and disability rights/human rights issue.
In Ireland, 55,000 people have dementia and in the absence of a cure these figures will rise to 152,000 by 2046.
Dementia affects men and women, rich and poor, young and old, rural and urban dwelling, and it incurs significant social, emotional and economic costs.
The economic cost of dementia in Ireland is estimated to be €1.69 billion and most of these costs (48%) are incurred by family members, predominantly women who provide the main bulk of informal care services to their relatives in their own homes.
About 4,000 of these 55,000 Irish people have “young onset dementia”, a rare unusual form of dementia sometimes known as “working life dementia”, since it occurs in younger people many of whom are still working and have young dependent children and financial commitments including mortgages.
Although conventionally seen as a disease, dementia is also a disability since the brain damage that causes dementia also results in the loss of abilities. As a disability dementia is also a human rights issue since many people living with the condition have all their decision making abilities removed immediately following a diagnosis: they are often discriminated against and subjected to unfair policies and practices.
Ireland’s recent ratification of the UN Convention on the Rights of Persons with Disabilities is welcome but how can the Convention be used by people living with dementia and their families to enjoy a better quality of life and who will monitor the inclusion of dementia as a disability when Ireland in a few years times will be required to report back its progress to the UN Committee? Have people with this condition a right to home care services or should they be expected to pay for such services? To what extent does the Irish National Dementia Strategy underpinned by a person-centered philosophy promote the citizenship and autonomy rights of the individual? Are newly evolving policies on dementia being cross-checked to ensure compliance with human rights principles?
This Symposium brought together national and international experts to discuss and debate these topics along with other dementia related issues in more depth.
Symposium organiser Professor Suzanne Cahill said:
“The theme of this symposium was chosen carefully as conventionally dementia is seen as a syndrome caused by a disease and not as a disability or a disability/human rights issue. While the disease framing of dementia compels us to think about plaques and tangles, brain scans, drugs, passivity and tragedy, the human rights framework is based on human dignity, autonomy, citizenship, participation and personhood. It requires governments to treat all people fairly as equals and never to discriminate on the basis of age, disability, mental health difficulties and so on, the goal is to promote human flourishing and a good quality of life.”
The human rights approach is not exclusive; it builds on public health, medicine, nursing, disability, economics, social work, law, engineering and bioethics among other areas.
The keynote address was given by Professor Steve Sabat, Professor Emeritus of Psychology at Georgetown University who addressed the topic of the ‘disability of dementia’ suggesting that the behaviour and performance of the individual diagnosed with dementia can never be solely explained in terms of neurodegenerative decline but rather must be explained as a combination of biological, psychological and social factors.
Professor Sabat said: “Although a diagnosis of dementia entails some specific and significant dysfunctions in certain cognitive abilities, it is just as clear that people diagnosed with dementia are like ourselves in all the ways that really matter”.
Other speakers included Dr Helen Rochford Brennan, an Irish dementia activist and a person who has early onset Alzheimer’s disease who is also Chair of the European Dementia Working Group; symposium organiser and dementia expert, Professor Suzanne Cahill; CEO of the Alzheimer’s Society, Pat McLoughlin and Trinity Professor in Medical Gerontology, Desmond O’ Neill among others.