Service provision for carers and wellbeing

Butler’s editorial on service provision and distress among carers of patients with dementia¹ echoed many of the conclusions of my undergraduate elective project. I examined distress in carers of patients with Huntington’s disease and whether improved service provision and support from voluntary agencies could reduce it. All the carers I met cited 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, depression,² and quality of life using standard validated tools.

Involvement with the Scottish Huntington’s Society did not 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 wellbeing.

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 worth while or helpful, and benefits may be too subtle for assessment tools to identify. 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 £87bn (€110bn; $170bn) a year³ and carers of dementia £6bn.⁴ Total NHS spending in 2006-7 was £81.678bn.⁵ Support for carers and perhaps new ways of assessing the less tangible benefits of services are merited.