Introduction

The past few decades have seen major changes in scientific views about dementia (Ballenger, 2006). Dementia was first viewed as a sign of normal ageing accompanied by an inevitable deterioration of cognitive functions. Alongside this came its designation as a biomedical condition. Accompanying this was the collection of a large body of scientific knowledge and a substantial increase in research funding in Europe and North America, dedicated to understanding the causes of the disease. There were, however, negative consequences that arose from the scientific and medical interventions in the field of dementia. In particular, the person experiencing the disease became largely neglected given the dominance of approaches associated with medicalisation. However, as a critical response, a humanistic and psychosocial approach began to emerge. One of the key people in developing this was Tom Kitwood, who introduced a new paradigm emphasising the person over the disease (Brooker, 2007). This more humanistic approach shifted perspectives from ‘the dementia sufferer’ to ‘the person with dementia’.

A number of models of care have been developed in response to Kitwood's perspective. Different quality-criteria have emerged with changes introduced in a range of care settings. Such developments have done much to improve our understanding of the experience of dementia. At the same time, significant limitations are still apparent. The gap between the ideal and actual care for people with dementia is still considerable, with evidence for continuing stigmatisation (Taylor, 2007; Innes, 2009; Bartlett and O’Connor, 2010). Quality of care is one outstanding issue, but other concerns are of equal importance, in particular, the question of making society aware of people with dementia and their subjective experience as well as ensuring both the person and the illness remain a central part of social life (Bond et al, 2004). As Bartlett and O’Connor (2010, p 25) argue: ‘… the need to extend understanding of the dementia experience to capture a more dynamic, contextualised perspective is now emerging.’ To achieve social inclusion requires the empowerment of people with dementia. The question is if and how this can be achieved. And is society ready for such a change (Boyle, 2008)?