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

It is well established that having a parent with any illness or disability can have an adverse effect on individuals' experiences of education and on their educational progress. Advances in medical knowledge 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 this diagnosis. Hardly any research has asked these young people directly about their experiences, but the limited evidence suggests that there will likely be significant emotional, mental and psychological damage with enduring impact on their lives. This article, drawing on findings from a unique narrative, auto/biographical study involving 24 British 6 to 31-year-olds, focuses on the consequences of parental young onset dementia for educational careers. These dementias are untimely progressive terminal illnesses with unpredictable trajectories and timelines, throughout the course of which physical, cognitive and emotional functions and abilities are inexorably lost. Participants' experiences show that living with a parent with young onset dementia, whilst negotiating the education system, can be extremely hard. Difficulties are exacerbated by the condition's distinctive characteristics, the current lack of any cure and anticipatory, pre-death grief. Lack of public awareness and understanding, both of young onset dementias and of dedicated resources and support services, also result in many feeling isolated and ignored. We make suggestions for positive provision and actions that educational institutions can make to begin to meet the particular needs of these young people.