Abstract

Cognitive and behavioral abnormalities are recognized as an integral part of Motor Neurone Disease (MND) and occur at all stages of the disease. The early detection of cognitive and behavioral symptoms in MND is critical. Such symptoms are only reported when we explicitly ask, evaluate, document, and assess. In the National Institute for Health and Care Excellence (NICE) MND guideline (2016), formal cognitive and behavioral assessment is incorporated in MND management and is fundamental to providing appropriate care to pwMND. Cognition is explicitly stated in 14 separate recommendations in the guidelines. The NICE guidelines therefore constitute pre-defined standards which we audited. This audit highlights that health professionals increasingly recognize the significance of cognitive screening in MND and follow more structured approaches in implementing this compared to previous years.

Highlights

  • Cognitive and behavioral abnormalities are recognized as part of Motor Neurone Disease (MND)

  • In the National Institute for Health and Care Excellence (NICE) MND guideline (2016), formal cognitive and behavioral assessment is incorporated in MND management and is fundamental to providing appropriate care to people with MND (pwMND)

  • The NICE guidelines constitute pre-defined standards which we audited. This audit highlights that health professionals increasingly recognize the significance of cognitive screening in MND and follow more structured approaches in implementing this compared to previous years

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Summary

Background

Cognitive and behavioral abnormalities are recognized as part of Motor Neurone Disease (MND). Cognitive and behavioral impairments have important functional implications for pwMND and their families: they increase caregiver burden, reduce survival, and impact care planning [3]. These impairments may not be readily apparent at clinical interview, the need to assess using standardized measures. 2. Use of gastrostomy Before a decision is made on the use of gastrostomy for a person with MND who has frontotemporal dementia, the neurologist from the MDT should assess the following: The person's ability to make decisions and to give consent The severity of frontotemporal dementia and cognitive problems Whether the person is likely to accept and cope with treatment 3. Non-invasive ventilation Before a decision is made on the use of non-invasive ventilation for a person with a diagnosis of frontotemporal dementia, the MDT together with the respiratory ventilation service should carry out an assessment that includes: the person's capacity to make decisions and to give consent, the severity of dementia and cognitive problems [5] Crockford et al Neurology 2018; [6] Elamin et al, Neurology 2013

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