Research blog: The differences between young onset and late onset dementia in diagnosis, care, treatment and models of care

By Ryan Gray, MSc

Though less common than late onset dementia, young onset dementia can be more challenging to diagnose and manage.

People reportedly wait up to five years to receive an accurate diagnosis and the psychosocial, medical and policy implications also differ from those related to later onset dementia. Available services are predominantly designed for, and delivered to people living with later onset dementia and can therefore fail to meet the needs people with young onset dementia and their families, who face unique challenges. Despite still being understudied, research on young onset dementia is advancing, with exciting new developments in prevention and care providing new opportunities to improve the lives of those living with dementia at a younger age.

This blog summarises four areas noted within a recent editorial article that will support the advancement of young onset dementia research.

Call to action 1: Young onset dementia research must be more globally linked to represent and meet the needs of the population of people with young onset dementia

Current estimates suggest that globally there are approximately 3.9 million people living with young onset dementia. These estimates are, however, drawn from research predominantly conducted in Europe, North America and Asia. Outside of Europe, few studies assess the difference in prevalence between varying ethnic groups. This is concerning as the available research within Europe suggests that rates for young onset dementia in minority ethnic communities are higher than for the population as a whole. These communities are currently underrepresented in young onset research and face numerous barriers when accessing diagnosis and dementia services. To understand this further and tackle these issues, future research must explore prevalence in diverse groups. This approach will support the development of culturally appropriate assessment methods, interventions, and care services for all.

Call to action 2: Young onset dementia research must be adequately funded and involve all people involved in providing and receiving care

Sufficient funding is key to advancing high-quality young onset research. A prime example of this is the research infrastructure in the Netherlands, where specially funded young onset dementia care-units collaborate with the Dutch Young Onset Knowledge Centre. This has allowed for the development of a national young onset dementia research agenda, outlining topics to be addressed in the upcoming years. As a result, the Dutch government has prioritised young onset dementia in the national dementia strategy and allocated 140million euro to fund research between 2023-2031. Funding has also led to a large-scale cohort project, providing the opportunity assess people with young onset dementia over time, and explore new ways to improve recognition and early symptoms, as well as pre and post-diagnostic care. With this, future research should move towards collaboration between people with lived experience, industry, and policymakers, as well as academics and other researchers. Well-funded research coupled with a collaborative approach will allow for crucial insights from those directly affected by young onset and high-quality impactful research that can make the lives of those affected better.

Call to action 3: Post-diagnostic care in young onset dementia needs evidence to inform policy and services

The variation in young onset dementia symptoms, causes and prognosis can make the funding and provision of care complicated. The lower prevalence compared to later onset dementia can mean that people with young onset are more disparately located and interact with professionals infrequently. Quality research focused on post-diagnostic care is therefore vital to meet this need. Currently, the majority of young onset dementia research explores biomarkers, imaging and other methods of understanding and diagnosing. While of course important, more research into the effectiveness of real-world care interventions, such as non-pharmacological and rehabilitative therapies are needed. Again, this research should be collaborative and involve those directly affected by young onset dementia.

Call to action 4: More needs to be known about palliative care needs of people with young onset dementia

Little is known about how best to support younger people with dementia and their families regarding palliative care. Recent research about advance care planning found that people with young onset lacked awareness of it, while family caregivers preferred a day-to-day approach to perhaps emotionally protect themselves. There is still a lot of work to be done to understand how best to start conversations about advance care planning, and to engage those with young onset dementia and their families in the process. This will allow services to provide optimal palliative care and to support those affected to take these incredibly difficult decisions.

Conclusion

In order for young onset dementia research to continue advancing, future work should consider focusing on each of the four areas noted above. A better understanding of the prevalence and effect of young onset dementia in diverse groups will allow for the development of equitable care for all. More funding and collaboration between researchers and those affected by young onset dementia will only serve to improve our understanding and therefore capability to provide the best possible care and therapeutic interventions. Finally, we need to be better equipped to support families when making decisions about palliative care and advance care planning.

Together, research within these areas will serve to improve the lives of all those affected by young onset dementia.

Published as Young-onset dementia: not the same as late-onset dementia – highlighting the differences in diagnosis, care, treatment, and models of care

Ryan is a research assistant with the Research and Publications team at Dementia UK. He completed an undergraduate degree in Psychology at Heriot-Watt University, Edinburgh, where he first began his research exploring the relationship between musical experience and cognitive function in late life. He then moved to the Netherlands to study Applied Cognitive Neuroscience, this time researching how musical experience can influence older adults’ ability to understand speech in noisy environments. Ryan is currently in the final stages of his PhD back at Heriot-Watt, where he is continuing to delve deeper into this complex relationship.

April 2025