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: “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 – ‘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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