What gets measured gets done, and why that's personal

Having seen both my mother and grandmother live with dementia, I've always believed that solutions in this space must be shaped by those with lived experience. Both of their experiences showed me, in different ways, that one of the hardest parts of dementia care isn't a lack of compassion or clinical expertise, it's a lack of information - and a lack of progress. No one had a clear or full picture of my mother's condition between appointments and, as a result, there were gaps in how her care and treatment was planned and adjusted.

A report published by the King’s Fund last week, funded by the Alzheimer’s Society, describes these system-level gaps perfectly, and resonates with my own family’s experiences.

It's often said that what gets measured gets done. The report makes the same point at a national level: because dementia data is collected inconsistently, we don't have a reliable picture of the scale of need, and we can't easily tell whether care and support for people with dementia are working. Where other major conditions like cancer now have a more joined-up approach, the picture of dementia care is still a patchwork. This makes it harder for policymakers, commissioners, and practitioners to develop plans, measure impact, and improve care for the people who most need it, and for individuals and families to navigate the care system.

The report highlights what's needed as a system to fill these gaps, from connected health and social care records to more comprehensive data about diagnosis, down to a skilled workforce that can leverage data to make better outcomes a reality for patients. At Kneu Health, we fill in the gaps around what's happening with a patient's condition, regardless of where they are or whose care they're under. We see the opportunity in three key places:

First: the point of diagnosis. Dementia rarely looks the same two days in a row. Symptoms fluctuate, often day to day, and that unpredictability is one of the hardest parts of the condition for patients and their families. It also means a single clinical assessment, however thorough, only ever captures a snapshot, not the fuller picture of how the patient is over time. When the data feeding into a diagnosis reflects one moment rather than a pattern, so does the support that follows it. Continuous information, gathered before and between appointments rather than only at them, gives clinicians a more detailed picture to work from and gives families an earlier, clearer starting point.

One patient using our memory assessment tool told us: "The app helped me feel prepared. It reminded me to look after my memory and keep on top of how I was doing. I felt much more prepared and felt better about going into my memory assessment."

Second: staying engaged. This is where continuous data has made a difference for the people we work with. Patients referred for a dementia diagnosis who sign up to the Kneu app engage at a rate of 90%, logging symptoms and completing cognitive assessments between appointments rather than only at them. As one clinical lead put it, having patients report their own symptoms between visits "provides meaningful insight into a patient before you even go into the encounter." That's not a hypothetical benefit. It's what happens when someone's condition can be tracked on an ordinary Tuesday, not just inferred from how they seemed at their last appointment.

It's not only patients staying engaged, either. Our Caregiver app can be downloaded by a carer or family member, giving them the same visibility alongside the patient and access to relevant resources. For families supporting someone through a diagnosis, that shared picture matters just as much as it does for clinicians.

Third: progress in dementia care. For decades, dementia care has moved slowly, but that's starting to change. New therapies are emerging, but they only work if we can identify the right people early enough, monitor how they're responding, and adjust course when needed. That's a data problem as much as a clinical one, and it's one Kneu Health is providing the data to address.

The King's Fund report rightly identifies that better dementia data needs national infrastructure, properly joined up health and social care records, and a workforce equipped to use what's collected. This direction of travel matters so much to us. We look forward to the publication of the new Modern Service Framework for Frailty and Dementia, and hope that data sits at its center, not as an afterthought but as the foundation everything else is built on.

In the meantime, we're committed to moving faster and working with our health system partners to build the tools that give clinicians and patients access to the continuous picture they need.

If you're interested in learning more about neurology data via Kneu Health, contact our team today.