Behavioural change in amyotrophic lateral sclerosis

Laura H. Goldstein

in Amyotrophic Lateral Sclerosis and the Frontotemporal Dementias

Published on behalf of Oxford University Press

Published in print October 2012 | ISBN: 9780199590674
Published online November 2012 | e-ISBN: 9780191753466 | DOI:
Behavioural change in amyotrophic lateral sclerosis

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In much the same way as it is now accepted that cognitive change may occur in about 50% of people with ALS, some of whom will have a full-blown dementia, behavioural change is now being viewed as an important potential aspect of ALS even if patients only meet partial criteria for FTD. Just as patients and carers wish to be told about the possibility of cognitive change in ALS the importance of acknowledging and explaining (as well as then managing) behavioural change is likely to be welcomed by patients and carers, particularly given the potential impact of behavioural change in the person with ALS on carers. Clinicians might, however, need to be mindful of the possibility that knowledge about potential behavioural change (as opposed to cognitive change—see Silverstein et al might lead patients to make different decisions about their future care. Wicks and Frost suggest that clinicians may be wary of burdening patients and their carers with information but warn that the absence of such information might also create additional burden for those affected by ALS, either directly or indirectly. Nonetheless, such imparting of information has to allow for the fact that patients and carers may have different information-seeking preferences. To address the clinical ramifications of behavioural as well as cognitive aspects of ALS, clinical teams will need sufficient resources to be able to involve the family/carers of people with ALS in assessing the challenging behaviour and implementing strategies, and to provide support for carers. Of considerable importance also will be a consistent MDT approach to the individual's management both within and across clinical services.

Chapter.  9001 words.  Illustrated.

Subjects: Neurology

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