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Coping with motor neuron disease: how do people adapt to the devastating reality?
  1. Michael Swash
  1. Correspondence to Professor M Swash, Department of Neurology, The Royal London Hospital, Whitechapel, London E1 1BB, UK; mswash{at}btinternet.com

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Physicians frequently note that patients with motor neuron disease (MND)/amyotrophic lateral sclerosis appear undistressed, and may even report a high level of quality of life, despite their evident severe disability. Sometimes this can be attributed to an associated frontotemporal dementia, especially when there is apathy, bland indifference, blunting of emotion or self-centredness.1 In others, depression is a feature, perhaps understandable to the observer or carer, and associated with despair and even a wish to hasten death. Understanding the process of psychosocial adjustment to chronic illness is an important aspect of holistic and palliative care during the course of the disease. It is a complex process that, perhaps surprisingly, does not depend on the extent of physical impairment but rather on the level of social support by family and carers, by the coping strategy employed by the individual and by cognitive function. The research described by Matuz et al in this issue2 takes an integrative approach to coping strategies in MND (see page 893). They report that severe depression and poor self-reported quality of life was likely when social support was perceived by the patient as poor, thus making coping difficult. The researchers have examined a model of coping with stress proposed by Lazarus and Folkman3 in which psychosocial adjustment to illness is determined by interactions between several illness variables, especially duration of illness, dependence on nutritional and ventilatory aids and physical disability, and cognitive factors, especially the degree of the perceived threat attributable to the disease. The latter were considered in relation to social support resources and coping strategies. Coping strategies were categorised as attempts to manage the situation, attempts to avoid confrontation with the situation and self-management of the emotional consequences of the situation whether by active management or by avoidance strategies.

Matuz et al2 confirmed that more severe functional impairment does not inevitably lead to poor quality of life or to depressive symptoms. They found that perceived social support was the strongest predictor of quality of life and correlated inversely with the severity of depressive symptoms, as predicted by the Lazarus and Folkman model.3 Thus higher perceived social support interacted with the individual's appraisal of the stressful situation to reduce the level of perceived stress and to promote well being. This finding emphasises the importance of communication aids in facilitating social interaction. Quality of life, a complex variable, was supported by increased levels of social support, especially a supportive marital relationship, information seeking and strategies of emotional avoidance behaviour. MND is not a static disease but a progressive disorder that requires different coping strategies at different stages of the disease.4 It is important to recognise both short term and long term stressors (eg, those related to the experience of diagnosis and then to the realisation of progression of the level of disability).5 People with MND often describe their feelings of distress as disease progression takes away functional capacity. This study is also important in recognising the early diagnosis and management of depression, on the need to provide support both to the patient and to their family and carers; and also the too often overlooked essentiality of provision of effective communication aids. People with MND can be helped to live fulfilling lives in the time remaining to them.

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Footnotes

  • Linked article 201285.

  • Competing interests None.

  • Provenance and peer review Commissioned; not externally peer reviewed.

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