Understanding Important Issues in Young-Onset Dementia Care: the Perspective of Healthcare Professionals

Abstract

Psychosocial research on the lived experiences of young-onset dementia patients and caregivers has identified salient issues about their care, however, views on care from the perspective of young-onset dementia healthcare professionals is less well known. The aim of this study was to investigate and identify important issues in young-onset dementia care provision from a healthcare provider perspective. The design was an exploratory qualitative interview study. In-depth semistructured interviews were conducted with healthcare professionals with clinical expertise in young-onset dementia drawn from medicine, nursing and allied health. Thematic analysis was applied to interview transcripts to identify themes representing important underlying issues in care across the dementia clinical pathway (i.e., prediagnosis, diagnosis and postdiagnosis). In prediagnosis, it is important for healthcare professionals to recognize symptoms as organic and degenerative and more than psychological, and to refer patients to an appropriate clinical facility for assessment. During diagnosis, it may be challenging to determine dementia, and methods are employed to manage diagnostic uncertainty. Following diagnosis, optimizing routine clinical care is important and can include the provision of practical informational guidance, empathic concern and psychoeducational support. Meeting service-user requirements in the community is an important aspect of care, and may be facilitated by the involvement of clinical nurse specialists. The findings are presented as a paradigm for holistic young-onset dementia care. The paradigm offers a framework for contemplating and evaluating the criteria and quality of young-onset dementia care.