Investigating the healthcare utilisation and other support needs of people with young-onset dementia.

ABSTRACT

INTRODUCTION: There exists a knowledge gap about the specific needs and utilisation of healthcare services by people with young-onset dementia (YOD), defined as being diagnosed before the patient is 65 years of age. Palliative care for dementia has received increasing attention, yet those with YOD have been overlooked. OBJECTIVE: To explore healthcare utilisation, including at end-of-life, of people with YOD in Ireland, 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 details regarding an advance care plan (ACP), using a standardised extraction form. RESULTS: Of the 121 patients identified, 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: People with YOD most commonly die from complications of dementia, as opposed to people with late-onset dementia, 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.