Abstract
Purpose – This is the first of two papers that aim to propose a revised model of care for dementia based on the combined findings of a number of projects undertaken by the authors. Design/methodology/approach – The paper is a conceptual discussion based on the findings from a series of projects in which the key methodologies included listening to people with dementia and carers, non-participant observation of services, and reviews of good practice, policy and literature. Findings – This paper reports on key messages received from people living with dementia, a revised values-base for service development and identifying the dementia journey from the perspective of those living with dementia. The framework moves away from the medical model towards understanding dementia as a long term condition that affects a number of dimensions. Practical implications – Through understanding the dementia journey from the perspective of people living with dementia, it is possible to design and implement a range of services that help people plan for and manage their own journeys, provide interventions proactively and help prevent crises. Person-centred outcomes can be identified, linked to, or cutting across, each of the phases the journey. Experiences are likely to improve, and resources can be targeted more efficiently and effectively. Originality/value – The authors identify a six-phase dementia journey from the perspective of people living with dementia, based on a set of values informed by people who have dementia and their carers.