95An Investigation of Hospital Healthcare Utilisation and Related Palliative Care Support Needs of People with Young Onset Dementia

Abstract

Introduction: There is a knowledge gap about the specific needs of, and utilisation of healthcare services by, people with Young-Onset Dementia (YOD), defined as those diagnosed<65 years. People with YOD and their families face unique challenges compared to those with late-onset dementia (LOD), and these can be addressed with a palliative care approach. Palliative care for dementia has received increasing attention, however those with YOD have remained overlooked. The study aim was: To explore healthcare utilisation, including at end-of-life, of people with YOD, using hospital electronic records for case finding. Method: We obtained Hospital In-Patient Enquiry data identifying all people with YOD admitted to three large urban hospitals between 2009 and 2016, and conducted a retrospective chart review. Information collected included demographics, medical and psychosocial history, functional capacity, last hospital admission, mortality and Advance Care Plan (ACP) details. Results: Of the 121 patients, 50% were male. The commonest dementia types were: Dementia secondary to Down's Syndrome (16%), Vascular (14%), Frontotemporal (13%) and Alzheimer's Disease (13%). 88% had ≥1 comorbid disease, including neurological (55%), cardiovascular (36%), and mental health illnesses (29%). Although 70% of People with YOD had an indication for an ACP (i.e. one or more markers of limited life expectancy), only 11% had any ACP recorded. 37% of patients had died, most commonly due to a complication of advanced dementia (e.g. aspiration pneumonia) rather than comorbid illness. Conclusion: There were notable differences between this sample of people with YOD and LOD populations, regarding their diagnosis, comorbidities, diagnosing physician, etc, which has implications for multidisciplinary team input and post-diagnostic support. People with YOD most commonly die from complications of dementia, as opposed to people with LOD who often die with dementia. Advanced care planning appears to be suboptimal in people with YOD. More research is essential to inform future policies and services for this often neglected population.