Having a father with young onset dementia: The impact on well-being of young people

Abstract

In the UK, it is estimated that there are over 16,000 people under 65 years with dementia. These people often have children still living at home and previous research indicates that 75% of parents report that their children have suffered psychological or emotional problems as a consequence of a parent having dementia. This study interviewed 12 participants aged 13 to 23 years, whose father had younger onset dementia. Grounded theory methodology identified five major themes: damage of dementia, reconfiguration of relationships, caring, strain and coping. An overarching theme of one day at a time, reflecting a response to the perception of severe threats in the future, appeared to run throughout the young people’s experiences. It is suggested that the emergent grounded theory has some similarity to stress-process models of caregiving with distinctive features arising from the interaction of young onset dementia and the developmental stage of the young people.