Insights from Health and Social Care Professionals Supporting Children and Young Adults with a Parent Diagnosed with Dementia: An Interview Study

Abstract

Dementia is recognised as one of the major global health and social care challenges of present times. When the onset of dementia occurs in midlife, there is an increased possibility that there are children and young adults involved who are dependent on the parent concerned. The aim of the study was to describe health and social care professionals’ experiences of identifying and supporting children and young adults with a parent with dementia. A qualitative descriptive approach was carried out with individual interviews of health and social care professionals, using a semistructured interview guide. Thirteen participants in rural and urban areas in Sweden were interviewed. The overarching theme, advocating a forgotten group with three categories were identified. They combine and reflect health and social care professionals’ experiences of identifying and supporting children and young adults with a parent with dementia. Health and social care professionals who encountered children and young adults with a parent with dementia described how they were not sufficiently trained in supporting this group and identified a general shortage of available appropriate support services. The children and young adults were also described as a forgotten and overlooked group in need of affirmation and support in a more systematic way.