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

Abstract

People who are diagnosed with any type of 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 affected by dementia at an 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, sometimes the service has an age cut-off and may not be available to the younger person. The National Dementia Office (NDO) commissioned this report to investigate the diagnostic and post-diagnostic support needs of people with Young Onset Dementia in Ireland. This was a mixed-methods study, meaning that different research methods were used. A literature review was conducted to gather the evidence for I) diagnostic pathways and processes and II) post-diagnostic pathways and processes for people with Young Onset Dementia. Interviews were conducted with people living with Young Onset Dementia (n=10) and their spouses and children (n=12) about their experiences and preferences. Interviews were also conducted with healthcare professionals and healthcare managers (n=25) 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 also because dementia might not be suspected in a younger person. People thus experienced many delays in waiting for a diagnosis, which was a very anxious time for them and their families. Experiences of diagnosis disclosure varied, poor experiences included not being given written information, and being told the diagnosis in an inappropriate (not private) setting. Once a diagnosis was established, people with Young Onset Dementia found it difficult to access post-diagnostic supports. Those who had accessed supports found that many were inappropriate, such as respite or day centres. People with Young Onset Dementia and their families needed information about employment rights, and accessing financial supports. Younger children of people with Young Onset Dementia might have psychological and emotional distress and may benefit from counselling or additional support. 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