'Just Helping': children living with a parent with young onset dementia

Objectives: While the consequences of caring for younger people with dementia have been a growing area of research, little is known about the children of these individuals. This study aimed to discover whether children of younger people with dementia can be compared to other young carers, the impact of their caring on mood, burden and resilience and what could promote coping. Method: In-depth interviews were carried out with 12 participants aged 11-18. A grounded theory methodology was used, supplemented with three quantitative measures. Results: Four higher order categories were identified focusing on: discovering dementia; developing a new relationship; learning to live with it and going through it together. Few participants showed depressive symptomatology, but more than half showed high levels of burden and most showed moderate levels of resilience. A three-stage process model of adapting to dementia is proposed, with children moving through grief to emotional detachment and increased maturity. Conclusion: This study has implications for service development in light of the National Dementia Strategy and proposals for whole family approaches for young carers. Whole family working by both dementia and children's services could reduce the burden on children of people with young onset dementia.