Dementia is a disease, not a person: exploring the experiences of people with dementia, carers and mental health practitioners on dementia and dementia services via a qualitative evaluation of a community-based memory service.

Abstract

This thesis presents a case-based qualitative evaluation of a community-based memory service for people with dementia and carers, informed by an advisory group including people with dementia and carers. Drawing on theoretical frameworks of critical and narrative gerontology, interviews with service users, carers and community mental health team staff generated rich accounts of experiences of using and delivering the memory service. Data from people with dementia and carers were analysed thematically and built on work by Willis et al. (2009) to generate quality indicators for dementia care. Analysis of data from CMHT staff drew on a framework of collective leadership devised for use in the NHS by the Center for Creative Leadership and The King's Fund (2014a). Findings reveal rich insights into: i) the everyday challenges faced by people with dementia and carers, ii) the positive contributions they can bring to the evaluation and development of services for people with dementia and carers and iii) the important role of collective leadership in the provision of high quality services for people with dementia. The thesis extends the current knowledge base relating to people with dementia and carers by developing particular understandings of how they can contribute to the evaluation and development of memory services.