- •Of all people with dementia, 10% have young-onset dementia (i.e. onset before 65 years).
- •People with young-onset dementia most commonly die from complications of dementia, as opposed to dying 'with' dementia.
- •People with advanced young-onset dementia have a high risk of complications such as infections and swallowing problems.
- •Of those hospitalised with young-onset dementia, 70% had an indication for an advance care plan, but only 11% had one recorded.
- •Most people with young-onset dementia die in hospital not their usual abode, even though most people prefer to die at home.
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.
To explore healthcare utilisation, including at end-of-life, of people with YOD in Ireland, using hospital electronic records for case finding.
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.
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.
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.
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Published online: January 11, 2019
Accepted: January 10, 2019
Received in revised form: December 12, 2018
Received: July 9, 2018
© 2019 Elsevier B.V. All rights reserved.