Vee P. Prasher & Mike Kerr 
Epilepsy and Intellectual Disabilities [PDF ebook] 

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’slifespan. 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.

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