New thesis examines patterns of care before and after dementia diagnosis
People's need for healthcare, formal care and support from family members often begins to change years before a dementia diagnosis is made. In her doctoral thesis, “Understanding complex care utilization along the dementia journey: patterns, trajectories, and determinants”, Sakura Sakakibara explores how different forms of care develop throughout the dementia journey and which factors influence those patterns.
Dementia is often associated with the point at which a diagnosis is received. However, the process usually begins much earlier, with gradual changes in memory and thinking that can develop over many years. The thesis follows older adults from the early stages of cognitive impairment through dementia to understand how their use of healthcare, formal care services and informal care evolves over time.
“Along this journey, people's needs for support grow and change. In Sweden, this support comes from healthcare, from formal care such as publicly funded home care and care homes, and from informal care provided by family members and others,” says Sakura Sakakibara, a doctoral student at the Aging Research Center (ARC), Department of Neurobiology, Care Sciences and Society.
Changes begin before diagnosis
One of the key findings is that care needs often start to increase before dementia is formally diagnosed. The research showed that hospital admissions became more common in the years leading up to a diagnosis, particularly among people with cognitive impairment. The findings also suggest that access to formal care may help reduce some of these excess hospitalisations.
As cognitive impairment progressed and was identified, both formal care services and support from family members increased. Informal care played an increasingly important role over time. Among people living with dementia, the amount of informal care grew by around 32 hours per month each year.
Different paths after diagnosis
The thesis also highlights that there is no single pattern of care after a dementia diagnosis. Instead, people followed different trajectories in their use of formal care. Factors including age, living arrangements and cognitive function at the time of diagnosis were associated with these different pathways.
“A better understanding of these differences may help improve care planning, coordination between healthcare and social care services, and the allocation of resources to meet individual needs,” says Sakura Sakakibara.
The findings point to the importance of recognising changing support needs at an early stage and of providing support not only to people living with dementia but also to family members who often take on a growing caregiving role. Greater awareness of these patterns could help healthcare and social care providers offer more timely and appropriate support and contribute to an improved quality of life for people with cognitive impairment and dementia, as well as their families.
Future plans
“I hope to continue conducting research in ageing and older adults' health, expanding into different health outcomes, care, and treatment. With my background in nursing and epidemiology, I am particularly interested in connecting research with real-world care. I also hope to develop international collaborations, including in Japan,” says Sakura Sakakibara.
The thesis was supervised by Professor Weili Xu, Department of Neurobiology, Care Sciences and Society and ARC. The public defence will take place on 11 November 2026.