Rethinking dementia: how autonomy and control can be fostered through the development of person centred services

Abstract

Purpose – The purpose of this paper is to describe the loss of autonomy and control as the core problem in dementia and highlights the individuality of the lived experience of dementia. It analyses the failure of dementia services to keep the individual central to their design and identifies that failure as the unavoidable result of methodological error. Design/methodology/approach – The paper guides the reader through the conceptual error in dementia service design and highlights the disconnect between clinical symptomatology and the lived experience of the person with dementia. The analysis continues with the fact that dementia diminishes those brain functions central to the lived individuality, a characteristic which should inform service design. Findings – The paper proposes an approach, building on these insights, to build a personalised care plan and resource centre, thus filling the gap system-level design of dementia services are bound to leave open. Practical implications – The paper presents a pragmatic approach using a digital, portable and editable care planning tool and personalised resource centre, which can be populated by the person with dementia and/or carer(s) with facilitation from, e.g. trained volunteers or others. Social implications – The care planning tool will have a range of functions, including facilities to aid staying in touch with relatives or peers (or anyone else, dependent on personal preferences), enable building peer-to-peer support networks and thus minimise social isolation and loneliness. Originality/value – There is limited understanding of the reasons why dementia services struggle to be user-friendly, accessible, transparent and responsive. The paper provides new insight into why this is comprehensively the case and its description of a digital healthcare platform, owned and formulated by the person with dementia, directly builds upon this insight and identifies how such a device can form part of a solution.