Caring for family with intellectual disability & epilepsy

Published: November 03 2014
Last updated: September 27 2022

Caring for a family member with intellectual disability & epilepsy: practical, social and emotional perspectives

Introduction from Dr Markus Reuber, editor-in-chief of Seizure

Seizure 23/10 has published Caring for a family member with intellectual disability and epilepsy: practical, social and emotional perspectives

Families and informal, non-professional caregivers continue to provide the bulk of care which may be required for people with epilepsy or for people with intellectual disabilities. If anything the responsibilities of family caregivers are likely to have increased over the last decades as, at least in economically advanced nations, more care is devolved to community settings and institutional care provisions are wound down. At the same time the complexity of care provision has increased – many people are now fed at home through percutaneous gastrostomies, some may be ventilated, require oxygen or regular physiotherapeutic interventions delivered by family care givers. Last but not least, care provision may now be required for much longer. Many individuals with disorders which were associated with a significantly shortened life expectancy until recently now live into adulthood or even into senescence.

Given that family care-givers are such an important factor (medically, socially and financially) in the provision of care for individuals with intellectual disabilities and epilepsy, it is surprising how little attention has been paid to the their quality of life and to the interaction between the quality of life of care givers and that of the people with disabilities they care for.

My editor’s choice from the present issue of Seizure, the qualitative study by Thompson et al. (1) is one of far too few studies in this area. This internet-based study was supported by the International Bureau for Epilepsy (IBE) and is based on written responses from 13 different countries. Focusing especially on family caregivers, the authors identified four main themes: practical concerns, disrupted family dynamics, emotional burden and positive experiences. In combination these themes illustrate the pervasive impact on family life for those supporting an individual with complex needs. Financial concerns, coordination and responsibility of care, diverted attention from other family members and social isolation all made contributions to the burden of care for family members. Whilst negative experiences predominated, the forth theme should not be overlooked: some respondents also reported how the challenges of looking after a family member with intellectual disabilities and epilepsy brought families closer together.

Whilst this study cannot provide a definitive overview of the actual and self-perceived burden which caregivers of those with intellectual disability and epilepsy face, it is an important step in the right direction. More work teasing out the particular problems associated with caring for a person with epilepsy rather than an individual with intellectual disabilities but no epilepsy may need to be undertaken. Ultimately, studies such as the paper by Thompson et al. should allow us to devise better and more sensitive quantitative measures of the care burden associated with epilepsy, which are currently not available.

[1] Thompson R, Kerr M, Glynn M, Linehan C. Caring for a family member with intellectual disability and epilepsy: practical, social and emotional perspectives. Seizure 2014; 23:856-63.