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EDITORIALS: Rob Butler The carers of people with dementia BMJ 2008; 336: 1260-1261 [Full text]

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Service provision for Carers and Wellbeing

Margaret A Loudon   (10 June 2008)

Service provision for Carers and Wellbeing 10 June 2008
Margaret A Loudon, Clinical Fellow in Cardiology Torbay Hospital, South Devon NHS Trust TQ2 7AA Send response to journal: Re: Service provision for Carers and Wellbeing	I read with interest the editorial by Dr Rob Butler1, regarding service provision and distress amongst carers of patients with dementia. It echoed many of the conclusions I drew from an undergraduate elective project examining distress in carers of patients with Huntington’s disease and whether improved service provision and support form voluntary agencies could improve their distress. All the carers I met sighted dementia and personality change as the most distressing feature of their day to day caring, far outweighing their other losses of time and money and exceeding the burden of the physical care. Without exception all the carers scored highly for anxiety, depression2 and quality of life, using standard validated tools. The involvement of the Scottish Huntington’s Society did not appear to alleviate their distress but it provided carers with valuable knowledge of the condition and a sense of empowerment. All carers who were involved with the society valued its input highly, despite a lack of quantitative benefit to their well being. This presents a challenge for service provision and resource allocation. Lack of objective evidence of benefit does not necessarily mean that a service is not worthwhile or helpful and benefits may be more subtle than our assessment tools allow. For many carers the knowledge that help or support exists and can be accessed if and when needed is in itself helpful. Carers save the UK tax payer £87 billion per year3 and carers of dementia £6 billion4. Total NHS spending in 2006/7 was £81.678 billion5. Support for carers and perhaps new ways of assessing the less tangible benefits of services is merited. 1 Butler R. The carers of people with dementia. BMJ 2008;336:1260-1. 2 Zigmond AS, Snaith RP. The Hospital Anxiety And Depression Scale. Acta Psychiatr Scand 1983, 67:361-70. 3 Buckner L, Yeandle S. University of Leeds for Carers UK 2008. 4 Schulz R, Beach SR. Care giving as a risk factor for mortality: the care giver health effects study. JAMA 1999;282:2215-9 5 Dept of Health, Departmental Report. The Stationary Office 2007. Competing interests: None declared