From 9 April 2015, St Christopher’s End of Life Journal will be published and hosted online by the BMJ

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Penny Hansford, Editor in Chief, St Christopher’s End of Life Journal

Living with people who have dementia and faecal incontinence

Clinical review
First published in this online journal
Declaration of interests: 
Nykki Hetherton
Author profile (accurate when this article was originally published): 
Nykki Hetherton is Community Mental Health Nurse, Mental Health Older Adults North Lewisham Community Team, Lewisham, London, and is currently undertaking the MSc in Palliative Care, Department of Palliative Care, Policy and Rehabilitation, King’s College, London. Email:

As the population ages, the number of people with dementia will increase. Although faecal incontinence (FI) is not always present in this patient group, its occurrence, in combination with urinary incontinence, is a prognostic indicator of advanced disease. A previous article explored the topic of FI in the context of people with dementia, highlighting associated causes and risk factors, as well as suggesting nurse assessment and management strategies (Hetherton, 2011). This article aims to explore the emotions experienced by caregivers and what it is like to live with a person who has dementia and FI. It discusses issues nurses ought to consider when exploring this sensitive topic with caregivers, including caregivers’ inattention to their own needs, the experience of having constantly to monitor the person with dementia for the next care episode, observers’ negative assumptions regarding carer ability to undertake the caring role, financial loss, sleep disturbance and isolation. Family caregivers place importance on professionals who are able to listen to their needs and facilitate support from relevant services.

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