Person-centred care in the early post-diagnostic phase of young-onset dementia: co-created insights from service users and professionals through participatory action research

Imagine receiving a diagnosis that changes the course of your life, but you are not yet elderly. You are still working, raising children, or managing a household. This is the reality for people with young-onset dementia, a condition where symptoms appear before the age of sixty-five. While medical guidelines often speak of "person-centred care," a phrase that sounds simple, the reality is far more complex. It means treating the individual not just as a patient with a disease, but as a person with a unique life, values, and a specific set of needs that shift over time. For a condition that strikes during the busiest years of adulthood, getting this right is difficult. The path to a diagnosis is often long and confusing, and the services available are frequently designed for older people, leaving those with young-onset dementia struggling to find support that fits their lives.

A team of researchers in the Netherlands set out to understand exactly how this care works in the first year after a diagnosis. They did not just ask doctors what they thought or look at medical records. Instead, they worked directly with the people living with the condition, their families, and the professionals who help them. This approach, known as participatory action research, meant that the people most affected by the problem helped design the study, ask the questions, and interpret the answers. The goal was to move beyond a simple checklist of services and understand how care actually feels and functions when it is delivered to a young family.

The researchers began by surveying twenty-two people who had been diagnosed with young-onset dementia within the last five years. This group included the individuals themselves, their partners or family members who provide daily support, and some pairs who answered together. They asked a straightforward question: did you receive the care and support you needed, at the right time, during the first year after your diagnosis? On a scale from one to five, the average answer was 3.4. This score suggests that while care was often present, it was not consistently perfect. Some people felt they received everything they needed, while others felt gaps in the system. When asked to explain, the responses revealed a mix of experiences. Some received helpful follow-up appointments and information about the disease, while others felt left alone after the initial diagnosis, missing out on mental health support or clear guidance on what to do next.

To dig deeper, the team held focus groups with professionals and then brought both groups together to discuss what they had heard. They discovered that everyone agreed on what good care should look like. They all wanted attention to the specific needs of the individual and their family, access to professionals who truly understood young-onset dementia, and flexibility to adapt to changing situations. However, the agreement ended when it came to the details of execution. The people living with the condition and the professionals often disagreed on who should do what, and when.

For instance, a medical specialist might provide a diagnosis and some information, but then stop seeing the patient, assuming a case manager would take over. The family might feel abandoned in that gap, waiting for a call that never comes. Or, a general practitioner might step in, but the family might not realize that this doctor is now the main point of contact. The researchers found that the problem was rarely a lack of good intentions or a lack of services. Instead, the issue was a lack of alignment. The different pieces of the care puzzle were not fitting together smoothly. The timing was off, the responsibilities were unclear, and the expectations between the family and the medical team did not match.

To make this invisible misalignment visible, the researchers used a simple visual tool. They mapped out the first year after diagnosis on a timeline, asking participants to place stickers to show when different types of support were needed and who should provide them. This exercise revealed that while everyone wanted the same things—help with daily life, emotional support, and practical advice—they imagined these things happening at different times and by different people. One group might expect a specialist to provide ongoing guidance, while another expected a social worker to handle it. Without a clear plan, these expectations collided, leaving people feeling unsupported even when services existed.

The study suggests that the key to fixing this lies in coordination. In the Dutch system, a specific professional called a case manager often sits in the middle of this network. The researchers found that when this person actively helped align the needs of the family with the actions of the doctors, therapists, and social workers, the care felt much more person-centred. It was not about inventing new treatments, but about ensuring that the existing ones were delivered in a way that made sense to the family. The case manager acts as a bridge, making sure that when a need arises, the right person knows about it and steps in at the right moment.

The findings highlight that person-centred care is not a static state that a hospital achieves once a patient walks through the door. It is a continuous process of adjustment. As the disease progresses and the family's life changes, the care must shift with them. This requires professionals to communicate clearly with each other and to understand that the family's needs are different from those of an older patient. The study concludes that for young-onset dementia, and for other rare and complex conditions, the solution is not just better medical knowledge, but better coordination. It requires a system where everyone involved knows who is doing what, and when, ensuring that the person at the center of the care is never left wondering who is in charge of their support.