Clinical

Young-onset dementia: meeting the information needs of carers

Increased awareness of dementia is associated with its rising prevalence in an ageing population. Young-onset dementia (YOD) is diagnosed when symptoms occur under the age of 65. Although YOD is less common, with an estimated occurrence of 100 people aged 45-64 per 100,000 population, it can have a devastating effect on family members, who face a lack of age-appropriate information and support.

This article has two objectives: to describe an international multidisciplinary research project to develop and test an online resource for carers of people diagnosed with YOD and to reflect on the experience of working on the project from the perspective of an early career researcher. The author describes how the international nature of the study, the multidisciplinary context and liaison with participants have helped to consolidate the author’s learning and professional development.

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