Life as a Caregiver for an Epilepsy Patient

Epilepsy has a great effect on the lives of their health professionals and individuals. In adolescence, epilepsy has an incidence of 1.5% to 2%. Its impact could be distinguished with regards to social consequences, such as isolation, bias, and unemployment, or with regards to psychological influences, as seen in private relationship difficulties, negative self-image, and low self-esteem.

The psychosocial issues experienced by people with epilepsy cause higher loss of wellbeing than the seizures themselves. Aside from the impairment in patient’s lifetimes, the impact of epilepsy could be seen in households, resulting in burden and diminished caregiver QOL. The burden on care providers of persons with epilepsy was studied mainly in kids.

Nevertheless, epilepsy that begins in adolescence may also have a large impact on caregiver or family lives. Two syndromes have onset in adolescence. Among them, temporal lobe epilepsy because of mesial temporal sclerosis, is the most typical kind of human epilepsy.

It may take the kind of an advanced syndrome comprised of a first precipitating insult, chiefly febrile seizures happening early in life, followed by a seizure-free period and after those spontaneous recurrent seizures in adolescence.

Drug treatment often fails later in life. It’s a syndrome of particular clinical interest as it contains the vast majority of patients with medically intractable epilepsy and is accompanied by high levels of psychiatric comorbidity and psychosocial problems, which often result in poorer QOL.

In the other extreme are idiopathic generalized epilepsies together with variable phenotypes the most typical being juvenile myoclonic epilepsy which contribute to 5% to 11% of all epilepsies and are portrayed by myoclonic jerks, generalized tonic-clonic seizures, and absence seizures with normal cognition.

The purpose of this study was to assess and compare QOL and burden in care providers of adolescents and adults together with either TLE related to mesial temporal sclerosis or JME. We sought to determine if care providers of individuals together with these specific epileptic syndromes suffered significant burden and diminished QOL.

This study included 100 consenting care providers, 50 of individuals with TLE and 50 of individuals with JME who received therapy in the Epilepsy Section of the San Paolo Hospital, Federal University of Sao Paulo, Sao Paulo, Brazil. The ethics committee of the institution accepted this survey.

For this research, the caregiver was defined as the nearest family member or friend who lived together with the patient or as a person who spent a higher part of his or her life together with the patient, witnessed seizures, and has activated a part in the patient care and treatment.