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Keywords:

  • phenomenology;
  • hermeneutics;
  • Alzheimer's;
  • user involvement;
  • carer's experience

This research arose out of a collaboration between a service user (M) and two researchers. Following M's invitation to us to explore issues surrounding a carer's experience of Alzheimer's, we jointly agreed a research strategy in which we would engage in a series of interviews with M, with the aim of developing insight into how the intimate carer's complex journey can support and benefit other family caregivers faced with similar challenges. Using a broadly hermeneutic-phenomenological method, three essential themes emerged to describe the carer's journey: (i) something is wrong; (ii) the challenging shared journey: being the carer; (iii) coping through meaning-making: advocacy. We arrive at a position which considers the unique role of an intimate carer as a ‘liminal’ figure between the private world of an Alzheimer's sufferer and the public world of health and social care systems. The paper concludes with a consideration of how the unique role of the intimate carer as mediator could be more respectfully involved as an ongoing knowledge source for care planning and treatment decisions. Specific areas of consideration in this regard include mechanisms for such user involvement in policy making, day-to-day care delivery, and developments in the support of other carers. We hope to highlight the ‘intimacy’ of this position and the distinctive benefits and challenges of such intimacy in providing a crucial level of user knowledge and ‘evidence’ for ongoing treatment decisions. We also hope to highlight the value and power of single-case study in generating useful insights for practice.