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.
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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.
Borasio D. Palliative care in ALS: searching for the evidence base. ALS and other motor neuron disorders 2001: 2 (Suppl. 1), S31–S35
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.
Brown J, Sutton L. Pathway leading to the neurological diagnosis, Neurological Care Pathway. NCPC—National Council for Palliative Care, Focus on Neurology, Oct 2007
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.
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
Herrmann N; Mamdani M; Lanctot KL, Atypical antipsychotics and risk of cerebrovascular accidents, Am J Psychiatry 2004 Jun;161(6):1113–5.
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
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.
O’Doherty L, Hickey A, Hardiman O. Quality of Life in Neurological Diseases Amyotroph Lat Scler Epub March 02 2010
Oliver D. Opioid medication in the palliative care of motor neurone disease. Palliat Med 1998; 12: 113–115.
Oliver D. Ventilation in motor neuron disease: difficult decisions in difficult circumstances. Amyotrophic Lateral Sclerosis Other Motor Neuron Disorders 2004; 5: 6–8.
Oliver D, Borasio D, Walsh D. Palliative Care in Amyotrophic Lateral Sclerosis from Diagnosis to Bereavement, second edition. Oxford University Press 2006:
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
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.
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.
Strong M. The syndromes of frontotemporal dysfunction in amyotrophic lateral sclerosis. Amyotrophic Lateral Sclerosis. 2008; 9: 323–338
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
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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
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