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Auto/biographical narrative research that touches on 'sensitive' areas can elicit accounts that researchers may find distressing and threatening to their emotional and psychological health. In this paper we offer a 'confessional tale' through which we consider our experiences of investigating a sensitive and painful topic from the perspectives of the Principal Investigator who was intimately acquainted with the field of study because it affected her own family, and of the Research Associate who had no prior experience of the substantive area. We discuss how we dealt with our distress and pain and offer some novel suggestions that other educational researchers using qualitative approaches might adopt to help ensure that their research is ethical in that the wellbeing of researchers, as well as participants, is safeguarded. [ABSTRACT FROM AUTHOR]

Drawing on narrative interviews from a study exploring the perceptions and experiences of children and young people who have a parent with young onset dementia, this article explores the ways in which the condition impacted their life courses. Dementia is degenerative, terminal and has an unpredictable timeframe that affected young people's time perspectives, life planning and the ways they conceptualized their lives. This article contributes to the literature around young people's life courses by illustrating how the concept of liminality can inform understandings of the impact of parental illness on the life course. Using a constructionist perspective we explore the impact of parental dementia on life planning in relation to education/career, mobilities and personal lives. For some, the future was a source of deep anxiety, whilst others were preoccupied with the present and unable to contemplate life beyond their parents' illness. On the whole, participants felt their lives were in 'limbo' until their parents' death. The data indicate that nuanced approaches towards the life course are required in order to better understand 'being in limbo' and to inform support. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

The number of young people who have a parent with dementia is rising as a result of improvements in diagnosis of young onset variants and demographic shifts. There has, however, been very little research focusing on this group. Accounts elicited as part of the Perceptions and Experiences of Young People With a Parent With Dementia described the period, usually some years, leading up to a diagnosis of a dementia and then the progress of the condition post diagnosis. These narratives were characterized by confusion, uncertainty, trauma, and distress as the young people struggled to make sense of the significant and often extreme, behavioral and attitudinal changes that were symptoms of the illness. This article describes and discusses how the young people experienced and navigated the temporal messiness and consequent biographical disruption arising from parental dementia. [ABSTRACT FROM AUTHOR]

Research suggests that the grief experienced by the family members of persons with dementia has a distinctive nature that differentiates it from sorrow attendant on most other ill health causes. Over a variable period of time, the way in which dementia manifests in cognitive and physical changes tends to be experienced as a series of serious losses, each of which can be a source of grief leading to significant stress and emotional, mental, psychosocial and physical ill health. Research to date has focused on spouses and adult children: here we seek to add to the literature by re-presenting the grief-related perceptions and experiences of children and young people who have a parent with a young onset dementia. We draw on findings from a narrative auto/biographical investigation to describe what dementia grief was like for study participants and to make suggestions for resources and support for those in this position. [ABSTRACT FROM AUTHOR]

In the U.K. context where the emphasis is (quite rightly) on living well with dementia, on positivity and enabling approaches, it can be difficult for researchers to investigate and report negative experiences. Failing to re-present perceptions and experiences as they are lived, however, does a serious disservice to the research endeavor and can prevent policy and service development and positive change. In this article, we present some stories told by participants in an Alzheimer’s Society (United Kingdom) Funded project uniquely investigating the perceptions and experiences of children and young people who have a parent with dementia. Sometimes the stories were not easy to hear, especially when they challenged dominant master narratives around dementia. We discuss our view that when the young people we spoke with told us how things were for them, we were ethically bound to respect and disseminate their accounts. [ABSTRACT FROM AUTHOR]