Understanding dementia and the person behind the diagnostic label

Abstract

The growing number of people living with dementia presents a worldwide challenge for society and for healthcare generally. The progressive cognitive impairments that are the hallmark of dementia can make it appear the person is disappearing as the disease progresses. Since the seminal theoretical work of Kitwood in the 1990’s, a person-centered model for understanding the experience of dementia and the way in which treatment is delivered has developed. This challenged the assumption that dementia is the death that leaves the body behind. Indeed, Kitwood asserted that the maintenance of personhood was what we should be aiming for in our care and support. He charged us with honouring the person struggling to be heard behind the diagnostic label that threatens to take personhood away. Kitwood’s theories have been developed into a practical framework for person-centered care delivery – the VIPS framework that asserts valuing all people regardless of their cognitive ability or age; recognising people as unique individuals; respecting the perspective of the person with dementia and uses that as a starting point for care provision and providing a supportive psycho-social milieu which enables people with dementia to feel socially confident and that they are not alone. Whilst there have been many developments within person-centered care practice, the research evidence is only just beginning to emerge. How these ideas and practices become part of regular care remains a challenge.