Abstract
The burden of early-onset dementia (EOD) is often overshadowed by an ageing population.
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.
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.
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.