Dementia, rights, and the social model of disability

Viewing dementia as a disability in terms of the social/rights-based model and the way in which people living with dementia are responded to has a range of implications.

This paper describes the social model of disability in relation to dementia, as well as national and international law that is informed by it or that it connects with. It goes on to describe tools that can be used to apply the model through policy, practice, service and community development. Using the social model of disability has implications for the rights of people with dementia under the law, for disability discourse and public policy, and for how dementia is experienced and perceived by people with dementia and their carers, as well as how it is viewed and discussed in public.

There are several implications for dementia policy and practice/services. In the social model, people with dementia are centre stage, with their voices elevated, and are recognised as equal citizens with rights. They are the agents of change and their agency is valued and recognised.

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They are part of mainstream society and the range of barriers (social, attitudinal, physical and environmental) that oppress and exclude them are broken down. They are also part of a broader social movement for global change. A current manifestation of the social model in practice is the development of dementia-friendly communities. Tools have been developed to enable the adoption of a rights-based approach and these can be effectively used in developing dementia policy and practice.

However, moving towards a social model requires massive change at the micro and macro (individual, institutional and systemic) levels. There are many stakeholders involved and their roles in this model change significantly and a shift in the power dynamics is necessary. Societal change is also needed in the form of a shift from the current ‘medicalised’ perspective on dementia to one that is based on the principles of solidarity and inclusion. The debate has really only just started.

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