Ongoing inner life

We commonly describe dementia as a loss of self - a gradual erosion of the characteristics that makes a person who they are. But does dementia destroy the person as it destroys the brain? This is a hugely important question as it impacts on the way we relate to a person living with dementia.

What we mean when we describe ‘a person’ is commonly framed around an idea of a self that thinks and acts meaningfully in the world. This is a long-held perspective, derived from philosophers such as John Locke, who argued a person is a “thinking, conscious self” (Locke 1690:218). This view contends that our personal identity is maintained by continuous beliefs, desires and intentions.

However, this perspective creates a moral problem when we consider dementia. When beliefs and intentions become discontinuous because of dementia , this understanding suggests that a person has either become another person (a change in personality caused by dementia), or the progressive loss of ability to express beliefs or intentions indicates a gradual loss of self in which eventually, the person cannot be regarded as a person any more.

An alternative view (put forward by Charles Taylor and rooted in the ideas of Wittgenstein and Heidegger) argues that a person cannot be understood without reference to the context in which they are embedded (their family network, cultural setting and personal history). This is known as the Situated Embodied Agent view (SEA).

This approach considers how we exist as much through our bodies as we do through our thoughts. Our cognitive capacity or psychological continuity (our beliefs, desires and intentions) are not the only relevant aspects of our inner life - even if these diminish, we continue to have sensory experiences, interpret the world around us and interact on some level with other people.

A person living with dementia continues to occupy important roles and status in the lives of others - as parents, partners, friends and neighbours. There is considerable investment in the continuance of the relationship, the integrity of the person’s life narrative is held dearly by the important people in their life.

Throughout the course, we maintain the view that a person is not lost as dementia progresses. A person with dementia continues to have an inner life and continues to relate to us, but our expectations and the way we communicate may need to change.

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Dementia Care: Staying Connected and Living Well

Newcastle University

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