Children and young people

Here you will find a collection of young onset dementia research studies related to children and young people.  They have been selected by Professor Pat Sikes from the University of Sheffield and Dr Mel Hall from Manchester Metropolitan University. Some of the links we provide are to the abstract only.  For a full paper it may be necessary to subscribe to the site or to pay a fee.

Title: The experiences of those affected by parental young onset dementia: A qualitative systematic literature review
Summary – 2021 paper offers a critical appraisal and thematic synthesis of the available qualitative literature (15 papers) around the lived experiences of individuals – including children and young people – who have a parent with a diagnosis of young onset dementia. Click here

Title: “Thrown into the deep end”: Mapping the experiences of young people living in a family affected by a neurological condition
Summary – 2020 study investigating the impact that having a parent with a neurological condition can have on young adults’ experiences of growing up and the nature of their support networks. Click here

Title: Co-creation of a family-focused service model living with younger onset dementia
Summary – 2020 paper reports a study which took a thematic analysis approach, drawn from the combined perspectives of the social model of disability and family systems-illness and which sought to understand the support needs of (Australian) families living with a parent with young onset dementia. Click here

Title – “It’s just limbo land”: parental dementia and young people’s life courses
Summary – 2019 study considers how children and young people may feel that their life plans and courses are affected by parental young onset dementia. Decisions about such areas of life as education and careers, personal relationships, and where to live were influenced by their parent’s illness. Given dementia’s unpredictable trajectory, people reported feeling that they were in a state of ‘limbo’ whilst their parent was still alive. The paper draws on a study of 24 British 6 – 31 year olds. Click here

Title: The impact of parental young onset dementia on children and young people’s educational careers
Summary – 2019 study that focuses on the consequences of parental young onset dementia for educational careers. Drawing on a study of 24 6 – 31-year-olds in the UK the paper shows that negotiating the education system can be extremely difficult. Difficulties are exacerbated by lack of public – specifically in this case of education staff – awareness and understanding of young onset dementia. This can result in young people not being adequately supported in their educational careers and choices with ongoing consequences for life courses. Click here

Title: “It’d be easier if she’d died”: young people with parents with dementia articulating inadmissible stories
Summary – 2017 paper draws on a study of 24 British 6 – 31-year-olds and considers how hard it can be to articulate and admit to negative experiences when the social/cultural emphasis is on living well with dementia. Click here

Title – “This is killing me inside”: The impact of having a parent with young-onset dementia
Summary – 2017 study exploring the experience of young adults having a parent with young-onset dementia​.  Five participants aged between 23-36 years old took part. Click here

Title – “Every time I see him, he’s the worst he’s ever been and the best he’ll ever be”: grief and sadness in children and young people who have a parent with dementia
Summary – 2017 report of what 22, 6–30-year-olds said about grieving for a parent with young onset dementia prior to the parent’s death.  Discusses ‘dementia grief’ and challenges the notion of ‘ambiguous grief’.  Click here

Title – In their own words: the experience and needs of children in younger-onset Alzheimer’s disease and other dementia families
Summary – 2016 account of 12 in-depth interviews with children and well parents in New York, which report disruption in many aspects of lives as a result of parental dementia and discusses implications for interventions.  Click here

Title – “How do young people ‘do’ family when there is a diagnosis of dementia?” Families, relationships and societies
​Summary – 2016 paper drawing on narratives of 22, 6–30-year-olds this paper considers the implications of young onset dementia for parent child relationships and illustrates strategies for maintaining and reconceptualising familial relationships.  Click here

Title – “It was then that I thought, what? This is not my Dad”: the implications of the ‘still the same person’ narrative for children and young people who have a parent with dementia
Summary – 2016 account of 22, 6-30-year-olds, the paper uniquely describes and discusses how young people’s experiences lead them to challenge the ‘still the same’ person’ narrative as applied to their parent with young onset dementia. Click here

Title – “From ‘What the hell is going on?” to the “Mushy middle ground” to “Getting used to a new normal”: young people’s narratives around navigating parental dementia. Illness, crisis and loss
Summary – 2016 paper drawing on narratives of 22, 6–30-year-olds the paper uniquely describes and discusses how the young people experienced and navigated temporal messiness and biographical disruption consequent upon parental young onset dementia. Click here

Title – Young children in early-onset Alzheimer’s disease families: research gaps and emerging service needs American journal of Alzheimer’s disease and other dementias
Summary – 2011 Case study of one family illustrating the psychosocial impact of a 16- and 11-year-old of their father’s early onset dementia. Click here

Title – Just helping: children coping with a parent with young onset dementia
Summary – 2009 literature review and empirical paper looking at impact on children parent with dementia.  Click here

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