FC39: The influence of social constructivism on children and young adults perspectives of parental young onset dementia: A thematic analysis of the narratives

Abstract

Background:

Western countries have a significant cohort of children (≤ 18) and young adults who live with a parent with a life limiting condition. Children and young adults’ perspectives of certain parental illnesses have been well documented. However, the perspectives of children and younger adults of parental young onset dementia tend to be absent from the academic literature. Older adult children have reported on the impact parental young onset dementia, however, there is a necessity for research with younger adult children and children under the age of eighteen in relation to their perspectives of the condition.

Objectives:

Utilizing cultural transmission theory, the current research explored if the social and cultural perspective influences the narratives of children and younger adults of parental young onset dementia.

Methods:

One-to-one interviews were held with children and younger adults (n = 17: 29·41% male) who currently live with (or have lived with) a parent with a formal diagnosis of young onset dementia (with various subtypes). The participants ranged in age from 14 to 33 years old (x_̅ = 21·18 years) with n = 6 eighteen years of age or younger (x_̅ = 16·17 years). Participant narratives were analyzed using inductive qualitative thematic analysis.

Results:

Detailed thematic analysis of the participant narratives uncovered five main themes (with related subthemes); making sense; lack of representation; threat to the family system; life has completely changed; systemic psycho-social support and education.

Conclusion:

It is clear from the current data that the social and cultural perspective can significantly influence the narratives of children and younger adults of parental young onset dementia. Children are faced with more responsibility, shifting roles, changing relationships, and may be forced to postpone educational or employment plans. Furthermore, the social perception of dementia as can act as a barrier to children and young adults accessing and using health and social care providers.