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

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

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

This paper reports on the co-design of an adapted version of iSupport for young carers. A theoretically driven co-design approach, drawing on the lived experiences of young dementia carers and experts who work with this target group was followed. As a result of this study iSupport for Young Carers was created. It is the first e-health intervention of its kind and aims to support the mental health, knowledge and skills of young dementia carers. Click here

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

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