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

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  2. Dr Tony Young
  3. Dr Ellen Tullo
Author(s)Young TJ, Manthorp C, Howells D, Tullo E
Publication type Article
JournalAgeing and Society
ISSN (print)0144-686X
ISSN (electronic)1469-1779
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Dementia and dementia care present huge and growing challenges, both to individuals and to societies worldwide. In the United Kingdom (UK), 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 over-emphasis on strictly biomedical interventions. Communication practices which support and sustain agency and empowerment have been identified as areas for particular improvement. A number of communication training and guidance packages are currently available, but these tend to exhibit a number of shortcomings, including a lack of user input; high context-specificity; a lack of an evidence base, cross-referencing to other communications theory or empirical work; and a lack of applicability to the needs of individuals. In general their uptake and level of application is very low. As a response, the project described here developed a new communications intervention which was characterized by the direct involvement of a broad spectrum of stakeholders, lay and professional. This intergroup dialogue produced an agreed version of free-to-users, user-informed and user-relevant dementia communications toolkit which is empirically-supported and adaptable to different sociocultural, and care, environments. We detail the conceptual background to the toolkit, our inclusive and iterative methodology in formulating it, and how it can be used to help support ‘personhood’ and quality of life, and help to challenge the socially constructed ‘othering’ of people living with dementia.
PublisherCambridge University Press
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