Share young onset dementia research
Do you know of a young onset dementia research study for inclusion in this collection?
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.
Hard to reach and hidden: Improving the identification of young dementia carers (2023)
Young dementia carers (YDCs) rarely receive appropriate training and support. Their visibility and identification remain dangerously low, and, consequently, support initiatives being developed are failing to reach them. This study explored the success (or failure) of YDC identification pathways as well as the barriers and enablers to their implementation. Click here
Having a Parent with Early-Onset Dementia: A Qualitative Study of Young Adult Children (2022)
The objective of this study was to explore the experiences and perceptions of young adult children of a parent with early onset dementia, with specific focus on personal lives and family and social relationships in a Norwegian context. Click here
Childhood perspectives of parental young onset dementia: A qualitative data synthesis (2022)
Many people with young onset dementia are parents; however, little is known about impact of the condition on children and young adults. A qualitative thematic analysis was conducted to synthesise the literature on the perspectives of children and young adults with a parent living with young onset dementia. Click here
Experiences and Needs of Children Who Have a Parent with Young Onset Dementia: A Meta-ethnographic Review (2022)
The aim of this review was to critically evaluate empirical evidence regarding the needs and experiences of children who have a parent with young onset dementia. A systematic search of five databases was carried out and the resulting 16 studies were reviewed using a meta-ethnographic approach. Click here
The experiences of those affected by parental young onset dementia: A qualitative systematic literature review (2021)
This 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
“Thrown into the deep end”: Mapping the experiences of young people living in a family affected by a neurological condition (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
Co-creation of a family-focused service model living with younger onset dementia (2020)
This study 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
“It’s just limbo land”: parental dementia and young people’s life courses (2019)
This 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
The impact of parental young onset dementia on children and young people’s educational careers (2019)
This study 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
“It’d be easier if she’d died”: young people with parents with dementia articulating inadmissible stories (2017)
This 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
“This is killing me inside”: The impact of having a parent with young-onset dementia (2017)
This study explores the experience of young adults having a parent with young-onset dementia. Five participants aged between 23-36 years old took part. Click here
“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 (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
In their own words: the experience and needs of children in younger-onset Alzheimer’s disease and other dementia families (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
“How do young people ‘do’ family when there is a diagnosis of dementia?” Families, relationships and societies (2016)
This paper draws on narratives of 22, 6–30-year-olds to consider the implications of young onset dementia for parent child relationships. It illustrates strategies for maintaining and reconceptualising familial relationships. Click here
“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 (2016)
An 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
“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 (2016)
This paper draws 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
Young children in early-onset Alzheimer’s disease families: research gaps and emerging service needs American journal of Alzheimer’s disease and other dementias (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
Just helping: children coping with a parent with young onset dementia (2009)
Literature review and empirical paper looking at impact on children parent with dementia. Click here
Current research studies
Taking part in young onset dementia research can provide an opportunity to contribute to the future of dementia care and treatment and to make a positive difference.
Simple guide to research
An introductory guide to help you find and understand research on young onset dementia.