Aim: The burden of early-onset dementia (EOD) is often overshadowed by an ageing population.
Methods: A questionnaire comprising 12 items was completed by 18 patients with EOD (15 with Alzheimer's disease [AD] and 3 with frontotemporal dementia) and 39 caregivers (20 spouses, 8 children, 7 siblings, 2 carers, and 2 health professionals). The onset of patients' symptoms was prior to the age of 65 years. Caregivers had to be supporting someone who matched these criteria.
Results: Early recognition and referral was perceived as the principle area of improvement by both patients (94.4%) and carers (69.2%; P < .0002). Patients evaluated "diagnosis" as the area of most need (88.9%) compared with caregivers who rated "treatment" (69.2%) as their principle concern.
Conclusion: The perceived concerns of patients with EOD differ from that of the caregivers. Continued consumer involvement is essential in ensuring a tailored approach to young people with dementia.