The impact of parental young onset dementia on children and young people’s educational careers

Hall, Melanie and Sikes, P (2018) The impact of parental young onset dementia on children and young people’s educational careers. British Educational Research Journal, 44 (4). pp. 593-607. ISSN 0141-1926

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Abstract

It is well established that having a parent with any illness or disability can have an adverse effect onindividuals’ experiences of education and on their educational progress. Advances in medicalknowledge are leading to more people under 65 being diagnosed with young onset dementias and,concomitantly, to more children and young people who are in education having a parent with thisdiagnosis. Hardly any research has asked these young people directly about their experiences, butthe limited evidence suggests that there will likely be significant emotional, mental and psychologi-cal damage with enduring impact on their lives. This article, drawing on findings from a unique nar-rative, auto/biographical study involving 24 British 6 to 31-year-olds, focuses on the consequencesof parental young onset dementia for educational careers. These dementias are untimely progressiveterminal illnesses with unpredictable trajectories and timelines, throughout the course of whichphysical, cognitive and emotional functions and abilities are inexorably lost. Participants’ experi-ences show that living with a parent with young onset dementia, whilst negotiating the educationsystem, can be extremely hard. Difficulties are exacerbated by the condition’s distinctive character-istics, the current lack of any cure and anticipatory, pre-death grief. Lack of public awareness andunderstanding, both of young onset dementias and of dedicated resources and support services, alsoresult in many feeling isolated and ignored. We make suggestions for positive provision and actionsthat educational institutions can make to begin to meet the particular needs of these young people.