People who have been diagnosed with dementia before the age of 65, are said to have “Young Onset Dementia”. People who are affected by young onset dementia can face different challenges to people who are living with dementia in older age, and may need different supports. However, in Ireland and in other countries we know anecdotally that mainstream dementia services are not always suitable for a younger person. Also, in some cases services may be restricted by age and may not be available to a younger person.
To understand the needs of people living with young onset dementia, the National Dementia Office (NDO) commissioned a report to investigate diagnostic and post-diagnostic supports for people with young-onset dementia in Ireland. This included a review of the literature relating to I) diagnostic pathways and processes and II) post-diagnostic pathways and processes. Interviews were also conducted with people living with young onset dementia and their spouses and children about their experiences and preferences. As well as interviews with healthcare professionals and healthcare managers working in dementia services to explore their experiences of current services, and their opinions on how these may be improved.
The findings from across the literature review and the interviews were consistent. Healthcare professionals felt that diagnosing young onset dementia is complex as there are more unusual sub-types and dementia might not initially be suspected in a younger person. This can result in delays in appropriate assessment and treatment and poor experiences for the person and their families. Overall, the findings from this report suggest that people with young-onset dementia in Ireland face many challenges, and their needs are not being met by current services. This report puts forward a number of recommendations to guide the development of policy and services in this area, which could lead to a better quality of life for all those affected by Young Onset Dementia.
The findings from this research have informed the contents of the forthcoming dementia model of care which sets out a care pathway for people with young-onset dementia.
Young Onset Dementia: A Review of Diagnostic and Post-diagnostic Processes and Pathways