Young Onset Dementia: A Review of Diagnostic and Post-diagnostic Processes and Pathways

Dr Siobhán Fox, together with Dr Caroline Kilty in the School of Nursing and Midwifery UCC, was awarded funding through a competitive tender process from the HSE to undertake a review of Diagnostic and Post-diagnostic Processes and Pathways for People with Young Onset Dementia.

1 in 10 people in Ireland who are diagnosed with dementia are aged under 65, and this is termed “Young Onset Dementia”. The impact of a diagnosis at this time of their lives is huge, and also greatly impacts families, where young children may be involved. However, services in Ireland have typically overlooked this group, being targeted towards the needs of a much older population. This project investigated the specific needs of people with Young Onset Dementia, such as employment issues, need for family counselling, difficulty accessing dementia services with 65+ age referral criteria.

A multi-method approach was employed including a literature review, interviews with people with Young Onset Dementia, their families, and healthcare workers. Ultimately Dr Fox, Dr Kilty and colleagues, put forth a number of recommendations which will form the foundational step for the National Dementia Office to improve dementia care for all in Ireland, inclusive of all ages and dementia types.

The report was published during Alzheimer Awareness week in September 2020, and the full report can be accessed online at: https://dementia.ie/wp-content/uploads/2020/12/Youngonsetdementia.pdf