The Impact on the Family of Young Onset Dementia

Young onset dementia (YOD) is a contemporary phenomenon and refers to people under the age of 65 with dementia. There are currently 44,000 people living with YOD in the UK and rates are projected to continue rising. Specialist age-appropriate services for people with YOD are scarce, although it is known that they have different needs due to their age and life stage. YOD affects the whole family unit and it is this aspect that the current research focuses on. The research question posed was: ‘What is the impact of young onset dementia on the family?’ The study applied a qualitative thematic analysis using Framework to systematically analysis the data collected from a convenience sample of families recruited from dementia cafes. Data were collected through semi-structured interviews with the family unit and individual participants. A total of six families, comprising of 16 participants in total, were recruited. The data generated were analysed to identify three main themes, namely: the Uncertain World; the Changing World; and the Shrinking World. These themes informed the development of a ‘three stage model of the subjective experience of families living with young onset dementia’. The model highlights the optimum stage for families to change and adapt promoting and extending the time they live well with dementia.