Epilepsy and challenging behaviour
Epilepsy occurs 15-30 times as often in PID (van schro et al 2000; Espie et al 2003).The prevalence of epilepy has been found to Vary with age of patients and aetiology of learning disability. The cumulative incidence of epilepsy at 22 years of age is much higher among those intellectually disabled people who also have cerebral palsy (38%) compared to those who do not (15%). It is also more commonly associated with some single gene disorders (e.g. Down Syndrome, Rett Syndrome, Fragile X) (Shepherd and Hoskins 1989), and the onset of epilepsy may form part of the onset of Alzheimers in people with Down Syndrome. (Rutter et al 1976).
One particular risk associated with the treatment of epilepsy is the potential toxicity of anti-epileptic medication. Achieving the optimal antiepileptic drug treatment represents a particular challenge as often people with severe learning disabilities may not be able to report the effects of toxicity, and side effects may very well manifest as behavioural issues. (Brodtkorb et al 2004). Some people who have complex partial seizures may be seen to be behaving in a bizarre or stereotypical way, particularly just prior to a seizure.
The term challenging behaviour was adopted from The Association for Persons with Severe Handicaps (TASH), and emphasises that behaviours represent challenges to services, rather than problems which are solely intrinsic to the individuals with learning disabilities. Emerson et al (1987) suggests the following as a definition of severely challenging behaviour:
"Severely challenging behaviour refers to behaviour of such an intensity, frequency or duration that the physical safety of the person or others is likely to be placed in serious jeopardy, or behaviour which is likely to seriously limit or delay access to and use of ordinary community facilities"
Although behaviours may not always be life threatening, they can significantly interfere with the quality of life of the individuals concerned, and that of those who live with and care for them. Challenging behaviours may include aggression, both verbal and physical, self-injurious behaviour, non-injurious stereo-typed behaviours.
A number of studies have attempted to describe the extent or prevalence of challenging behaviour. There are a number of difficulties in answering this question however. The term 'challenging behaviour' is socially defined, and what is registered as extremely challenging in one set of circumstances and for one set of staff, may not be defined as such in any other. For a more detailed discussion of these issues see Qureshi (1994).
The relationship between epilepsy and challenging behaviour was not clear in the literature found for this exercise.Deb and Hunter (1991) in a study of 150 people with learning disabilities and epilepsy (100 in hospital and 50 in community settings), found that 55.3% showed some type of severe behaviour problem. However, the slight increase in severe behaviour problems was not statistically significant.
A more recent population-based prevalence study (McGrother et al 2005) looked at estimating the prevalence of epilepsy in adults with learning disabilities on the Leicestershire Learning Disability Register, where adults aged over 19 with learning disabilities known to specialist services are notified, and details updated systemically on a regular basis. The study also attempted to identify the frequency of overall and specific difficulties including psychological or behaviour problems.
The study found that individuals with the lowest level of understanding (10% of study group) were significantly more likely to have any reported epilepsy than those with the highest level of understandings (46% of the study group.)
It was also found that those with reported epilepsy were significantly more likely to have severs or frequent behavioural problems. After adjustments were made with the data, it was found that problems with disturbing others at night, seeking attention and being uncooperative remained specifically associated with epilepsy. Those using anti-epileptic drugs appeared to have no increase in psychological symptoms, behaviour problems or other disabilities compared with those not on anti-epileptic drugs. There was an association between taking anti-epileptic drugs and a low level of understanding. Some anti-epileptic drugs may worsen behaviour problems and predispose to sleep disturbance, which may explain some of the findings.
References:
Bowley C, Kerr M. Epilepsy and intellectual disability. J Intellect Disabil Res 2000; 44 (Pt 5):529-543.
Brodtkorb, E. et al. (2004) Levetiracetam in adult patients with and without learning disability: focus on behavioural adverse effects. Epilepsy Behav. 2004 Apr; 5(2):231-5.
Deb S and Hunter D, (1991); Psychopathology of people with mental handicap and epilepsy. I: Maladaptive behaviour in The British Journal of Psychiatry 159: 822-826
Emerson E, Barrett S, Bell C, Cummings R, McCool C, Toogood A & Mansell J, (1987) 'Developing services for people with severe learning difficulties and challenging behaviour: Report of the early work of the Special Development Team in Kent',
McGrother, C. W.; Bhaumik, S.; Thorp, C. F.; Hauck, A.; Branford, D., and Watson, J. M. Epilepsy in adults with intellectual disabilities: prevalence, associations and service implications. Seizure. 2006 Sep; 15(6):376-86.
Qureshi H (1994) 'The Size of the Problem' in Severe Learning Disabilities and Challenging Behaviours, Eds Emerson E, McGill P and Mansell J, Chapman & Hall
Rutter M, Tizand J, Yule W, et al. Research Report: Isle of Wight Studies 1964-1974. Psychological Medicine 1976; 6: 313-32
Shepherd C, Hoskings G. Epilepsy in school children with intellectual impairments in Sheffield: the size and nature of the problem and the implications for service provision. Journal of Mental Deficiency Research 1989; 33:511-514.
van Schrojenstein Lantman-de Valk H, (2005) Health in People with Intellectual Disabilities: Current Knowledge and Gaps in Knowledge in Journal of Applied Research in Intellectual Disabilities 18 (4), 325–333.
Resources
Epilepsy and Intellectual Disabilities: Learning About Intellectual Disabilities and Health
Adults with Learning Disabilities and Epilepsy Care Pathway