Developing a carer communication intervention to support personhood and quality of life in dementia

Abstract

ABSTRACTDementia and dementia care present huge and growing challenges, both to individuals and to societies worldwide. In the United Kingdom, the context for the study reported here, recent key policy initiatives have highlighted problems in care provision, noting a lack of appropriate carer guidance, and an overemphasis on strictly biomedical interventions. Communication practices which support agency and empowerment have been identified as areas for particular improvement. A number of communication training and guidance packages are currently available, but these exhibit shortcomings, including a lack of user input and cross-referencing to other communications theory or to relevant empirical evidence; a lack of individualisation; and high context-specificity. In general, their uptake and level of application to care is very low. As a response, the study described here developed a new communications intervention characterised by the direct involvement of a broad spectrum of lay and professional stakeholders. This inter-group dialogue produced an agreed free-to-users, user-informed and user-relevant dementia communications toolkit (DEMTEC), which is empirically supported and adaptable to different socio-cultural and care environments. We detail the conceptual background to the toolkit, the inclusive and iterative methodology for its formulation, and how it can be used to help support ‘personhood’ and quality of life and to challenge the socially-constructed ‘othering’ of people with dementia.