Participation in everyday activities among young adult relatives of parents with dementia – A qualitative study

Previous research has shown that young adult relatives of parents with dementia experience strain
through increased responsibility and changed relationships in the family with potential consequences
for their emotional, mental and physical well-being. Less is known about how young adult relatives
experience their participation in everyday activities typically associated with young adulthood and how their participation is affected by the parent´s dementia. This study explores young adult
relatives’ experiences of participation in everyday activities and how their participation was affected
by having a parent with dementia. The study followed a qualitative, descriptive approach. Semistructured
individual interviews with 11 young adult relatives (aged 21 – 31) of parents with
dementia were conducted. The interviews were analysed using Kirsti Malterud’s iterative cross case
analysis method ‘Systematic text condensation’. The analysis identified three categories: Dilemmas
of choosing, Not having a choice and Reversal of roles. The young adult relatives experienced
dilemmas and constraints regarding participation in everyday activities usually related to young
adulthood. They navigated situations where they were to choose between the parent with dementia
and their own everyday activities and they often downgraded or cancelled participation in own
activities related to leisure time, school, job and career. Moreover, their participation seemed
affected by chores and responsibilities resulting in a lack of energy leading them to forego social
activities in particular or change their choice of activities. The young adult relatives need help and
support in their everyday lives. Health care professionals are encouraged to focus on relieving them
from some of the responsibilities and practical tasks enabling them to live their own lives as young
adults, while being part of the family and contributing towards the responsibilities and tasks with
which they can cope.