Skip to main content

Symptomatic Management and Palliative Care in Neurodegenerative Disease

  • Chapter
  • First Online:
Neurodegenerative Disorders

Abstract

In the absence of effective disease-modifying drugs, the emphasis in all of the neurodegenerative diseases is on symptom management and maintenance of quality of life for the patient and carer. Palliative care enhances quality of life for patients and family members by addressing medical symptoms and individual psychological, social, and spiritual needs. Emphasis is placed on patient autonomy and dignity. Patients are encouraged to generate advance directives. Formal international guidelines for active palliative management of the common neurodegenerative diseases remain to be established.

This is a preview of subscription content, log in via an institution to check access.

Access this chapter

Chapter
USD 29.95
Price excludes VAT (USA)
  • Available as PDF
  • Read on any device
  • Instant download
  • Own it forever
eBook
USD 39.99
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever

Tax calculation will be finalised at checkout

Purchases are for personal use only

Institutional subscriptions

Further Reading

  • Bede P, Oliver D, Stodart J, van den Berg L, Simmons Z, O Brannagáin D, Borasio GD, Hardiman O. Palliative care in amyotrophic lateral sclerosis: a review of current international guidelines and initiatives. J Neurol Neurosurg Psychiatry. 2011 Apr;82(4):413-8.

    PubMed  Google Scholar 

  • Borasio D. Palliative care in ALS: searching for the evidence base. ALS and other motor neuron disorders 2001: 2 (Suppl. 1), S31–S35

    PubMed  Google Scholar 

  • Bourke SC, Tomlinson M, Willims TL, Bullock RE, Shaw PJ, Gibson GJ. (2006) Effects of non-invasive ventilation on survival and quality of life in patients with amyotrophic lateral sclerosis: a randomized controlled trial. Neurology.The Lancet 5: 140–147.

    Article  Google Scholar 

  • Brown J, Sutton L. Pathway leading to the neurological diagnosis, Neurological Care Pathway. NCPC—National Council for Palliative Care, Focus on Neurology, Oct 2007

    Google Scholar 

  • Bruera E; Kuehn N; Miller MJ; Selmser P; Macmillan K, The Edmonton Symptom Assessment System (ESAS): a simple method for the assessment of palliative care patients. J Palliat Care 1991 Summer;7(2):6–9.

    PubMed  CAS  Google Scholar 

  • Chio A, Mora G, Balzarino C, Mutani R. Interdisciplinary ALS Centers: effect of survival and use of health services in a population-based survey. Neurology. 2004;62(Suppl 5):S23.003

    Google Scholar 

  • Herrmann N; Mamdani M; Lanctot KL, Atypical antipsychotics and risk of cerebrovascular accidents, Am J Psychiatry 2004 Jun;161(6):1113–5.

    Article  PubMed  Google Scholar 

  • Mitsumoto H, Bromberg M, Johnston W et al. Promoting excellence in end-of-life care in ALS. Amyotrophic Lateral Sclerosis, Volume 6, Issue 3 September 2005, pages 145—154

    Article  PubMed  Google Scholar 

  • National Council for Palliative Care. National Survey, Neurological Conditions From diagnosis to death—exploring the interface between palliative care, neurology and rehabilitation in the management of people with long term neurological conditions. 2006. London. National Council for Palliative Care.

    Google Scholar 

  • O’Doherty L, Hickey A, Hardiman O. Quality of Life in Neurological Diseases Amyotroph Lat Scler Epub March 02 2010

    Google Scholar 

  • Oliver D. Opioid medication in the palliative care of motor neurone disease. Palliat Med 1998; 12: 113–115.

    Article  PubMed  CAS  Google Scholar 

  • Oliver D. Ventilation in motor neuron disease: difficult decisions in difficult circumstances. Amyotrophic Lateral Sclerosis Other Motor Neuron Disorders 2004; 5: 6–8.

    Article  Google Scholar 

  • Oliver D, Borasio D, Walsh D. Palliative Care in Amyotrophic Lateral Sclerosis from Diagnosis to Bereavement, second edition. Oxford University Press 2006:

    Google Scholar 

  • Oliver D, Campbell C, O’Brien T, Sloan R, Sykes N, Tallon C, Taylor-Horan J. Medication in the last days of life of MND/ALS—A study from Specialist Palliative Care providers in the UK. ALS 2009 10 (Suppl 1):13

    Google Scholar 

  • Regnard C, Reynolds J, Watson B, Matthews D, Gibson L, Clarke C. Understanding distress in people with severe communication difficulties: developing and assessing the Disability Distress Assessment Tool (DisDAT). J Intellect Disability Res. 2007; 51(4): 277–292.

    Article  CAS  Google Scholar 

  • Shega JW, Levin A, Hougham GW et al., Palliative Excellence in Alzheimer Care Efforts (PEACE): A Program Description, Journal of palliative medicine, Volume 6, Number 2, 2003, © Education Development Center, Inc.

    Google Scholar 

  • Strong M. The syndromes of frontotemporal dysfunction in amyotrophic lateral sclerosis. Amyotrophic Lateral Sclerosis. 2008; 9: 323–338

    Article  PubMed  CAS  Google Scholar 

  • The Liverpool Care Pathway for the dying patient (LCP), LCP generic document version 12, Marie Curie Palliative Care Institute Liverpool (MCPIL), Dec 2009, Available at http://www.mcpcil.org.uk/pdfs/LCP%20V12%20Core%20Documentation.pdf. Last accessed 30/01/2010

  • Thomas K. Caring for the dying at home: companions on the journey. Radcliffe Medical Press Ltd, 2003. ISBN 1–85775–946-X, The Gold Standards Framework website: http://www.goldstandardsframework.nhs.uk/ last accessed 30/01/2010

  • Van den Berg JP, Kalmijn S, Lindeman E et al. Multidisciplinary ALS care improves quality of life in patients with ALS. Neurology 2005; 65:1264

    Article  PubMed  Google Scholar 

Download references

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Orla Hardiman .

Editor information

Editors and Affiliations

Rights and permissions

Reprints and permissions

Copyright information

© 2011 Springer-Verlag London Limited

About this chapter

Cite this chapter

Bede, P., Brannagáin, D.Ó., Lorenzl, S., Oliver, D.J., Hardiman, O. (2011). Symptomatic Management and Palliative Care in Neurodegenerative Disease. In: Hardiman, O., Doherty, C. (eds) Neurodegenerative Disorders. Springer, London. https://doi.org/10.1007/978-1-84996-011-3_13

Download citation

  • DOI: https://doi.org/10.1007/978-1-84996-011-3_13

  • Published:

  • Publisher Name: Springer, London

  • Print ISBN: 978-1-84996-010-6

  • Online ISBN: 978-1-84996-011-3

  • eBook Packages: MedicineMedicine (R0)

Publish with us

Policies and ethics