Reframing dementia: can a human rights approach bring hope?

Abstract

AbstractDementia discourse is largely medicalized and the voice of the person with dementia is not often heard in public or policy discourse. Dementia still remains stigmatized and hidden, and in many societies, is often associated with shame due to its social construction. As a result, people living with dementia and their carers retreat, live lesser lives and largely exist on the margins of our society. However, if we were to reframe dementia as a human rights issue (as set out the United Nations Convention on the Human Rights of Persons with Disabilities) and use the rights model of disability to begin to tackle the societal, attitudinal and physical barriers that limit participation, then perhaps there is hope that people living with dementia continue to be valued and respected a central part of our families, communities and society after diagnosis.A Human Rights Based Approach (HRBA) would ensure that the person’s agency is recognized, they are treated as equal and active citizens with rights, and make certain they are involved in all the decisions that impact their lives in multiple spheres, including policy, public discourse, research, services, civic life and advocacy. This reframing of the discourse requires the broad range of actors to engage and change their practice. From a policy and systems perspective, it would demand a significant shift in the current approach and an adopting of the PANEL principles (Participation, Accountability, Non‐discrimination and Equality, Empowerment and Legality) in how we develop policy and service responses. A HRBA requires a move from the traditional ‘doing for’ to a model of enablement, active engagement and working together. By challenging the medical model and the current status quo, can we reduce stigma, bring people with dementia and their families in from the margins and offer hope for a better life living with dementia using a human rights lens?