Publications & Reports

The needs of patients with early onset dementia.

Elizabeth Armari, Anna Jarmolowicz, Peter K Panegyres
Neurodegenerative Disorders Research Pty Ltd, Subiaco, Perth, Australia.


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.


  • Journal: American Journal of Alzheimer's Disease and other Dementias
  • Published: 01/02/2013
  • Volume: 28
  • Issue: 1
  • Pagination: 42-46