Dementia as a disability: Implications for ethics, policy and practice. A Discussion Paper.

Abstract

People experience dementia in different ways, not just in terms of the type and severity of symptoms, but also in terms of how they react to and manage living with dementia. Increasingly, people with dementia are expressing a desire to get on with their everyday lives. They want to avoid being defined solely in relation to dementia and to continue to be considered as valued members of society. This is particularly important as the term dementia often has negative connotations. It is widely considered as a stigma. Neurological impairment may interfere with people’s ability to get on with their lives, as may differences in coping skills, financial resources, the emotional and psychological impact of dementia, and access to timely and good quality support. Reactions of relatives, friends and fellow citizens are also important, as well as society’s response to dementia. This was highlighted by Kitwood in the 1990s when he outlined what came to be known as the biopsychosocial model of dementia . There are also differences at the level of society, reflected in practices, attitudes and structures. These may, on the surface, seem fair or neutral (i.e. “that’s just the way it is”). In many cases, however, they reflect a lack of consideration and failure to act in a responsible, ethical and even legal way towards people with dementia... In this report, we focus on the possible implications for ethics, policy and practice of raising awareness about the potential of framing dementia as a potential disability.