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September 5, 2025Open Access

From living well to dying well with dementia: The significance of an expanded understanding of loss for end-of-life care

JSJoseph M. SawyerUniversity of Suffolk PHPaul HiggsQueen Mary University of London

Key Points

Current dementia care approaches prioritize social productivity, but face obstacles at the end-of-life stage due to increased decline.
Theoretical frameworks for dementia care have shifted from deficit-focused to capacity-oriented, revealing gaps in understanding loss.
A dialectical perspective on dementia can enhance end-of-life care, acknowledging both the presence of decline and the value of social narratives.
Future interventions in dementia care require a clearer understanding of where value and success lie amidst experiences of dependency and loss.

Abstract

As rates of dementia increase, the need for care is clear. Understanding what this looks like and how people might orientate the narratives and practices of care against a universally relatable version of success is less clear cut yet seems crucial if we are to progress towards an ideal of care that allows for a ‘good’ or ‘dignified’ death with palliative care. With this as a central focus, the paper examines the orientating principles that govern the current approach to dementia care. We map the evolution in academic theory from deficit-based models of care that identify impairments as a means to building resources to counter them, towards capacity-oriented approaches that focus on accommodating the new experiences that dementia brings. We describe how these frameworks are predominantly orientated towards early dementia, where they work to support people to live in an active and socially productive way, and how tensions arise when they are transposed to the end-of-life where decline and dependency are the dominant experience. Our analysis suggests that the current theoretical approaches to dementia care need to be thought of as dialectical in relation to the lived experiences of decline, dependency and loss. We argue that entertaining such a dialectic can offer insights into how the approach to end-of-life care in dementia might accommodate the presence of loss, tension and paradox in such a way that does not preclude success whilst offering wider social value. We conclude that further interventions that respond to the scale of need will only add further tension without first having some vision of where value might lie. Where conventionally dementia has been viewed through the reductionist lens of being either a biological or social challenge to which there should be a matching solution, it is perhaps more useful to look at it from the inside out, to learn the lessons that dementia and its associated vulnerabilities may hold for humanity. This, we suggest, may offer a route to knowledge progression in the field.

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