Share young onset dementia research
Do you know of a young onset dementia research study for inclusion in this collection?
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.
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
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
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
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
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
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 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
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
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
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
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
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
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
Literature review and empirical paper looking at impact on children parent with dementia. Click here
Do you know of a young onset dementia research study for inclusion in this collection?
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.
An introductory guide to help you find and understand research on young onset dementia.