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‘Feeling the Way’

Understanding How Advocates Work with People with Dementia

Dementia North, Northumbria University, UK, caroline.cantley{at}unn.ac.uk

Kay Steven

Dementia North, Northumbria University, UK, kay.steven{at}unn.ac.uk

Dementia advocacy is a new and evolving field. There is a small, and growing, body of practice-based knowledge about dementia advocacy, but limited research-based evidence about what works and what constitutes good practice. This article draws upon data collected as part of a project on the development of dementia advocacy in the United Kingdom. We explore how those providing dementia advocacy services describe and explain the basis on which they work in the areas of: consent, instruction, representation, and advocacy relationship. We show that although service providers are clear about the principles of advocacy, everyday practice is complex. There are many dilemmas, ambiguities and uncertainties. We conclude by discussing the implications of our findings for practice, policy and research.

Key Words: advocacy • best interests • consent • empowerment • substituted judgement

Dementia, Vol. 3, No. 2, 127-143 (2004)
DOI: 10.1177/1471301204042333


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