THE IMPACT OF EPILEPSY
Volunteers Training Module
EPICENTRE, Chennai, India
It is possible to spread light in many ways. One can be the candle or the mirror which reflects the candlelight
The need for voluntary organisations
Epilepsy is a chronic disorder
Epilepsy is associated with profound emotional & social changes
Voluntary organisations are necessary to bridge the gaps in care from the medical profession and the state
Public support & private donations are essential to help people with epilepsy
The need for volunteers
The public needs education about epilepsy to get rid of its negative image
Professionals like teachers, nurses, social workers, hospital administrative staff, etc have little formal training in the truths about epilepsy
People with epilepsy, their families, friends & employers need educating and few centres or doctors undertake this
The role of voluntary organisations
People with newly diagnosed epilepsy or people struggling to cope with epilepsy need education & support
Counselling is necessary
People with epilepsy feel isolated & alone.Being able to talk to other people helps overcome emotional handicaps & stigma
Action groups willing to spread awareness are necessary
EPICENTRE
EPICENTRE is the Epilepsy Institute & Centre for Treatment, Research & Education
It was started in Chennai in 1994 on 9th March
Its vision was to provide comprehensive diagnostic and therapeutic services to people with epilepsy
Its mission is to enable people with epilepsy live a full life, with everyone, like everyone in spite of epilepsy
PSYCHOSOCIAL ASPECTS OF EPILEPSY
Epilepsy is more than a medical diagnosis
It can influence many aspects of one’s family & social life
These difficulties can impact the epileptic’s mental health & have a powerful impact on seizure control
Education, employment,family life, social networks, emotional adjustment are all issues to be dealt with
EDUCATION - Problems
Early onset of seizures
Prolonged seizure history
Left hemisphere causes for epilepsy
Nocturnal attacks
Brief epileptic discharges
High dose of medication
Multiple drug effects (polypharmacy)
All of these can cause academic difficulties
The MOST important cause for poor school performance in children with epilepsy are:
Parental expectations & overprotection
Teacher expectations
Misconceptions about epilepsy
Absence from school
Low self esteem
Anxiety due to stresses at home
EDUCATION & EPILEPSY-Solutions
Establish good communication channels between the school,family & doctor
Educate teachers, pupils, family and the child with epilepsy
Encourage a positive self image by avoiding unnecessary restrictions, increasing chances of success, & by providing reliable career advice
Minimise time off from school for clinic appointments, seizure recovery
Ensure full education by encouraging tertiary education
Sensitive monitoring - detect difficulties early, neuropsychological & psychosocial evaluation and counselling
These measures maximise the academic & social development of a child with epilepsy
EMPLOYMENT - Problems
People with epilepsy face high levels of unemployment/underemployment
Work provides in addition to financial rewards, a way of structuring time, contributes to person’s identity & feeling of self worth
If paid employment is not available, jobs enabling meaningful contribution to society should be encouraged
EMPLOYMENT & EPILEPSY-Solutions
Encourage a structured daily activity during childhood, and after leaving school
Educate children & families about career options & choices
Provide a nurturing environment of job choices, both paid and unpaid
Emphasise the necessity to keep busy even (if there is no financial gain)to develop a feeling of self worth
FAMILY LIFE - Problems
People with epilepsy do not live in a vacuum
Attitudes of family greatly influence coping ability
Epilepsy impacts family relationships
Fear of adverse social reaction may isolate families
Misconceptions about epilepsy may make parents overprotective & feel inadequate
FAMILY LIFE & EPILEPSY-Solutions
Provide accurate information about epilepsy, its treatment, etc
The impact on the family of a parent with seizures is profound and such a parent requires a lot of psychosocial support.Children in such families may be overprotective & show behavioural difficulties,as refusal to sleep or attend school
SOCIAL NETWORKS- Problems
50% of young people with epilepsy spend most of their time at home in social isolation
They may be too frightened to go out
They may be too anxious about possible stigmatistion & marginalisation
Their anxiety may make them awkward or even rude in social situations
SOCIAL NETWORKS & EPILEPSY - Solution
Education about epilepsy to both the patient and those around him/society
Stress management programs
Social skill development programs
Providing a forum for self expression and mingling with others (support groups, selfhelp groups,etc)
EMOTIONAL ADJUSTMENT - Problems
Lack of control
Unpredictability of timing, type and location where seizures may occur
Depression
Adjustment difficulties
Societal & family attitudes and degree of support available
Sz frequency & severity may not directly be related to an individual’s ability to cope
EMOTIONAL ADJUSTMENT - Solutions
Psychological interventions to encourage
Adaptive coping strategies
Treatment of anxiety & depression
Promoting positive life style
In those with neuropsychological deficits, such as memory or attention difficulties,additional support is needed & realistic educational & employment goals should be set and ADL coping strategies emphasised
THE PATIENT’S VIEW - When an attack occurs
When a seizure occurs, an onlooker may respond in many ways
They may recoil in horror
Make fun of the patient
Ignore the patient entirely
Intervene appropriately
Call a doctor or an ambulance
THE PATIENT’S VIEW - Daily hassles
The person with epilepsy needs support to:
Overcome social slights and cruel remarks
Have confirmation of his/her self esteem
Adjust positively to the diagnosis with time
Pursue an active social & working life
Overprotection can lead to increased dependency, lack of motivation, and illness behaviour patterns
THE PATIENT’S VIEW
Misconceptions abound
Epilepsy is associated with mental illness & mental handicap
Single seizures cause brain damage
Epilepsy is inherited, irrespective of cause
Epilepsy is always for life
These “taboo” concepts have to addressed & the best way to do this is by education
THE PATIENT’S VIEW - Disclosure vs concealment
Interpersonal relationships
Education
Employment
Many people with epilepsy fear lack of understanding and fear rejection in these areas, hence say nothing about their epilepsy and live in fear of an attack
THE PATIENT’S VIEW
In addition to various psychosocial problems associated with the diagnosis of epilepsy,the person with epilepsy also faces the problems of treatment
Cost of treatment
Time off for clinic visits, rest periods, etc
Side effects of medication like chronic fatigue, memory loss, unsteady gait, concentration difficulties, etc
HOW MANY PEOPLE HAVE SEIZURES?
20-120 people per 100,000 population have epilepsy or 5-10 per 1000
The lifetime risk for anyone having a seizure is 2-5%
The risk of a febrile seizure before the age of 5 years is 5%
Half of those developing epilepsy do so below the age of 15 years
WHY DOES EPILEPSY OCCUR?
60-70% of all epilepsies have no clear cause
They are called cryptogenic epilepsy
Other causes include
Head injury
Strokes
Brain tumours
Brain damage at birth,etc
Rare causes - birth defects, etc
Why treat epilepsy ?
More seizures before diagnosis, worse the prognosis
The first two years after onset of seizures is very important for treatment
If seizures persist for more than 2 yrs despite treatment, the chance of remission is halved thereafter
Majority become seizure free in the first 2 yrs of treatment
Even late introduction of treatment can give control in about 50% of patients
Why treat epilepsy - SUDEP
Common causes of death :
Chest infections due to aspiration
Neoplasms
Epilepsy related death (SUDEP)
Accidents
SUDEP - sudden, unexpected death status epilepticus, seizure related death, accidents, drug overdose
Epilepsy - the facts
The risk of having a febrile fit before age 5 years is 5%
Half of those developing epilepsy do so by the age of 15 years
Major geographic differences of incidence are not reported
About 60-70% of epilepsy have no clear cause
At least half of these patients show abnormal tissue lesions on imaging
60% of epilepsy is complex partial seizure and secondarily generalised seizure
30% is primary generalised epilepsy
Absence & myoclonic constitutes less than 5%
Overall over 40% of patients do not receive treatment for epilepsy, and the treatment gap can increase to 90% in some underdeveloped countries
Why does epilepsy occur?
Epileptic neurons with unstable membranes (abnormal conductance of sodium, potassium, calcium)
Loss or recurrent inhibition due to genetic causes or brain injury and abnormalities in the GABA pathway
Excess activity or increased sensitivity to excitatory aminoacid neurotransmitters eg:glutamate
Prognosis of epilepsy – indicators for poor recovery
Partial or mixed seizure types
Symptomatic epilepsy
Presence of structural cerebral pathology
Presence of intellectual handicap, psychiatric illness, personality change or social problems
Older age of patient,positive family history,severe EEG abnormalities less certain indicators of poor prognosis
Epilepsy counselling
Interpersonal relationships
The ability to cope with daily activities
Social stigma
Adjustment
Difficulties with employment
Difficulties in sexual relationships
Referral for counselling is usually for anxiety,depression, need for emotional support and noncompliance of treatment
Areas to concentrate on
Family background - home life & relationship with family
Emotional adjustment - anxiety, ability to cope with stress, depression
Social life - Isolation, problems meeting people,forming & sustaining friendships
Daily life - Difficulties in eating, sleeping, alcohol, etc
Personal relationships - close loving and sexual relationships
Work/employment - Difficulties in obtaining or keeping work, attitude of employer or colleagues to epilepsy
Management of the condition - the patient’s adjustment to seizures and their management
Emphasize the need for equal effort from patient & counsellor to achieve success
The counsellor’s role
One hour sessions for at least 5 to 6 sessions are necessary
Issues such as fear, anger, denial and confusion have to be addressed
Identify problems
Offer coping strategies
Overcome blocks to change
Set & review agreed tasks
The counsellors role
Coping strategies are very important
Indicate that choices are available
This will enable the patient to deal with problems in a practical way
The intrusion of epilepsy into daily life can then be viewed in a more balanced way
Anxiety levels then come down
Quality of life is improved and the patient feels more in control
Employment
Patients may seek guidance for the following:
Career guidance for a school leaver with epilepsy
Employment difficulties faced by people with active epilepsy
Employment difficulties faced by people with late onset epilepsy
Employee related factors
Age, motivation to work, aptitudes, skills,qualifications and work experience and job performance if already employed
Knowledge of own epilepsy
Seizure related factors - cognitive, sequelae , timing, frequency & pattern of seizures
Adverse effects of drugs
Other handicaps - cognitive, psychiatric,physical, social
Job & employer related factors
State of job market
Statutory barriers
Health and safety requirements
Availability of special employment provisions
Employer related - knowledge & attitudes towards epilepsy,recruitment & employment policies & practices, access to occupational health services
The physician’s role
Early, accurate identification of seizures
Achieving rapid control with appropriate therapy
Effective counselling on the nature & implication of epilepsy
Ensuring that the individual is fully knowledgeable of his/her epilepsy and is able to communicate this knowledge effectively
Providing accurate information about statutory & nonstatutory barriers to employment
Giving accurate information to employers & employment advisors as necessary
Giving medical support to the employee on a long term basis, particularly when job prospects are threatened
Health & Safety requirements in the workplace
Driving license regulations can be used as a standard for assessing risk in the workplace
Medical information should be kept separate from other details about the employee, and should only be considered after employment decisions have been taken & considered only by qualified personnel
Driving & transport
Seizure freedom for one year
Aura, seizures with retained consciousness, minor attacks with preserved consciousness, myoclonic jerks are all counted as seizures
Seizures due to noncompliance of drug intake, or due to change in medication are not exempt
Seizures occurring only in sleep & this pattern for 3 yrs or more can drive
Heavy vehicle licence can be held if no sz or treatment for sz for over 10 years, and no neurological evidence for continuing liability to seizures.
There are no laws, advocacy or support facilities with regard to driving and travel in India, except that epilepsy is taboo
The law
When a crime is committed the following considerations could negate a guilty mind:
The person was under duress*
The person was provoked*
The person was innocent
The person was of diseased mind
The person was absent in mind during the act
Duress & provocation are not relevant
Automatism & Crime
Medical definition of epileptic automatism:
A state of clouding of consciousness which occurs during or immediately after a seizure, during which the individual retains control of posture & muscle tone, but performs simple or complex movements without being aware of what is happening. The impairment of awareness varies. A variety of initial phenomena before the interruption of consciousness & the onset of automatic behaviour may occur
Legal definition of automatism:
The state of a person who, though capable of action, is not conscious of what he is doing..it means unconscious, involuntary action and it is a defence because the mind does not go with what is being done.
Action without any knowledge of acting, or action with no consciousness of doing what was being done
Expert witness - checklist for epileptic automatism
The patient should be a known epileptic
The act should be out of character & inappropriate to the circumstances
There must be no evidence of premeditation or concealment
If a witness is available,a disturbance in consciousness should be witnessed
Loss of memory for the event is usual
Epileptic automatism is a clinical diagnosis, though EEG/CT/MRI etc may offer support
Medicolegal aspects
Role as expert witness:
Epilepsy & driving
Epilepsy & violence - does it occur?
Epilepsy & crime
In daily practice:
Confidentiality- legal & ethical problems
Legal aspects of advice to patients
What may go wrong - negligence relating to management of epilepsy
Genetic factors in epilepsy
Epilepsy is a major feature in over 160 single gene disorders, & in 2/3 of these mental retardation also occurs
These constitute only 1% of all cases of epilepsy
Epilepsy can be familial, and almost any cerebral disorder can lead to epilepsy
Risk of developing epilepsy
Overall sibling risk of seizure 2-5%
If EEG is done, 20-30% of siblings will show abnormality, even is seizure free clinically
Early age of onset increases chance of family member having epilepsy -7.5% if onset 0-3 yrs & 4% if onset 4-15 yrs
Risk of epilepsy if sib does not have epilepsy is 1.5%
Unprovoked sz in offspring of patients with epilepsy is about 6%
This is twice as high if the mother has epilepsy and if the seizures were of early onset
If idiopathic generalised epilepsy, risk is 9-12% and 3% if cryptogenic partial epilepsy
Risk higher if both parents have epilepsy
Single seizures
1/3 of patients with a single seizure have a second seizure within one month
Recurrence after 2-5 untreated seizures is 32% within the first month,51% within three months and 87% within one year
Early effective treatment may prevent development of chronic, drug resistant epilepsy
|
