Abstract
Recognizing the individual behind their disease, and “hearing their story,” is the key to helping people with advanced neurological disease. Good neurological care will always require more than physical examination and inquiring about physical symptoms.
Getting to know the individual and what is important to them is essential. It also requires sensitivity and an ability to work in an equal two-way relationship. It can be a normal part of the everyday professional relationship for those in the clinical professions, but elevated professionalism with an uneven power dynamic has no part in this. Recognizing the individual’s spirituality in the widest sense, and going some way to meet those needs, may be a challenge which many in the caring professions are already doing on a daily basis. A neurological illness which may affect the ability to communicate and to think rationally can easily have a deleterious effect on relationships and on sexuality. There are, however, some simple principles which can be used to help couples living with a neurological disease, particularly in the realms of sexuality.
Advanced neurological disease will impact on and often hurt those around the person with the illness, and support for partners and family should be an integral part of overall care. Expert help with financial, housing, and practical support will be required increasingly as the illness progresses. There may be many obstacles to providing care in these diseases, particularly in the more advanced phases, but there are still important and powerful ways to help these people and those who are important to them, requiring time, patience, and drawing on personal skills and attitudes.
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Campbell, C.W., Chandler, B.J., Smith, S. (2013). Holistic Care: Psychosocial and Spiritual Aspects. In: Oliver, D. (eds) End of Life Care in Neurological Disease. Springer, London. https://doi.org/10.1007/978-0-85729-682-5_5
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