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Carers of people with MND may experience changes to their health and lifestyle. Statutory and voluntary organizations are able to support the carer in various ways. This review investigates the personal impact on carers and their experiences of service provision. A systematic search of online and grey literature was made for the period 1994-2004. Thirty-two key texts were retrieved and a narrative synthesis conducted. The main themes were: 1) Impact on carer: general health, emotional state, life satisfaction, socio-economic concerns, relationships, and protective factors; 2) Experience of service provision: primary care, health professionals, social care, written information, and voluntary organizations. There is a paucity of written documentation on the experience of assisting someone with MND. Data collected are diverse and sometimes contradictory. Sample sizes are often small and generalization difficult. Main findings show that maintenance of social support, activities, and a positive outlook may lessen the chance of ill health arising from long hours spent caring, and having a named coordinator may assist with access to resources, and provide practical and emotional support during and after the caring role. Carers may become ill themselves unless adequate support is given to them throughout the course of the disease.

Original publication




Journal article


Amyotroph Lateral Scler

Publication Date





132 - 141


Amyotrophic Lateral Sclerosis, Attitude to Health, Caregivers, Databases as Topic, Emotions, Health Services, Humans, Life Style, Needs Assessment, Social Support