The human rights perspective on dementia: from prevention to social care priority in national agenda

During the last century the number of people affected by dementia is increased. At the present, people living with dementia are estimated at 35.6 million. According to different researches, this data will double in 2030 and triple in 2050 . Given the global impact of dementia in our society, the international system has started to face to this problem . The World Health Organization defines dementia as “an umbrella term for several diseases affecting memory, other cognitive abilities and behaviour that interfere significantly with a person’s ability to maintain their activities of daily living”. During these years it has only been analysed from a biomedical point, forgetting the social, health and economic consequences of this phenomenon . It’s important to highlight that there is a gap between prevention and care, in fact there are a lot of people that are not diagnosed . In addition, this severe impairment affects not only the person, but also family, caregivers, and society. The lack of awareness in the world brings negative consequences such as stigmatisation, social isolation, lack in care and diagnosis. For this reason, the international system has decided to look to dementia as a “public health priority”, by adopting “public health approach” and “person-centred approach” . The creation and the adoption of a strong system wants to reduce health and social care costs for families, helping and promoting government to adopt specific regulations. As a result, we could give a “formal recognition of the rights of people with dementia and their caregivers” (respecting “the right to appropriate autonomy and self-determination” ). The aim of the legal system is to guarantee “quality of life”, the “freedom and respect for autonomy” , “social well-being” of the person living with dementia and its family. These principles are part of the CRPD, in fact as affirmed in the Article 1 of the CRPD “the purpose […] is to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity” . It will be analysed the historical background, starting from the Convention on the Rights of Persons with Disabilities, the Optional Protocol to the Convention, the Charter of Fundamental Rights of the European Union, the World Programme of Action concerning Disabled Persons and in the Standard Rules on the Equalization of Opportunities for Persons with Disabilities. Then, in this paper important instruments will be debated such as “The global action plan on the public health response to dementia 2017-2025”, the “Decade of Healthy Ageing 2020-2030”, the 2030 Agenda for Sustainable Development and other policy adopted by states and international system in order to protect the rights of people living with dementia. Finally, it will be considered the role of NGO and civil society. Especially, looking at the Italian system and regulations about dementia, I will also present the project about prevention in dementia in which I’m taking part.