Like many people with epilepsy and ID, John has comorbid behavior problems. This association is dealt with in detail later in the book. A clear and consistent approach to this is likely to offer much to John in terms of his quality of life. Other psychosocial concerns will need addressing. Emphasizing and explaining the impact of epilepsy and its treatment on John’s cognitive well-being can help reduce anxiety in caregivers and the family and help establish the importance of treatment. Informing people about the negative impact of seizures while trying to minimize the difficulties in social life imposed by people’s fears of seizures can be a difficult challenge. This is most difficult when discussing seizure-related death. However, our position must be to inform patients and families so they can make their life and treatment choices with complete understanding of choices and risks. Delivering a Package of Care Delivering continuity of health care will be a major need throughout John’s lifespan. This continuity should cover seizure assessment and management yet also be responsive to changes in the care environment. A person with ID who is no longer resident in the family home is likely to undergo many changes in staffing over a lifetime. As for many people, their ability to communicate their health needs will be compromised, and these changes in staff can offer considerable risks in chronic disease management.
Epilepsy and Intellectual Disabilities brings together findings from research and clinical practice, with comprehensive coverage of the important aspects of epilepsy in persons with intellectual disabilities. It is crucial for professionals involved in the care of persons with all intellectual disabilities to have a broad understanding of the essential range of issues, and therefore this book provides a truly multi-disciplinary perspective, complete with many figures and illustrations to underline the key points.
Undoubtedly, research and clinical practice is much more advanced in the general population than in persons with intellectual disabilities, and so it is important that professionals and academics in the field of intellectual disabilities are made fully aware of ongoing developments in the general population, which will more likely than not become relevant to the intellectually disabled population. Through experience, this book also acknowledges that the impact on the person themselves and on their carers always needs to be taken into account, with treatment programs established with a multi-faceted team approach in mind.
Avoiding the jargon of many titles in this area while maintaining the hands-on approach of clinical practice, this book meshes the practical and scientific worlds, with all chapters written by leading experts in the field.