Diagnosing dementia: more data, please!
Earlier this month, the Royal College of Psychiatrists published its second audit of memory assessment services in England and Wales, based on data collected between January and August 2021. Also known as memory clinics, these services provide advice and specialist assessment that can aid a diagnosis of dementia, followed by prescribing symptomatic treatment to help people to live as well as possible with their condition.
Clinicians, people affected by dementia, commissioners, regulators and policy wonks (that’s me!) have been poring over the results.
A bleak picture is better than no picture
Taken together, the long waiting times, the devastating impact of the global COVID-19 pandemic and the postcode lottery of diagnostic quality, paints a very bleak picture for dementia diagnosis and care. While I don’t dispute that, there is also something here to celebrate: the very fact that there is a picture to paint.
This is only the second time the UK has conducted such a rich audit of its memory assessment services, and in a world where knowledge is power and data saves lives, the paucity of data for dementia in the UK is a longstanding problem.
Why we need data for dementia
At a recent conference, former cancer tsar – Professor Sir Mike Richards – spoke about the moment the UK government sat up and took notice of the need to make improvements in diagnosing cancer. What did it, he said, was data – data that showed the UK was falling far behind its international counterparts when it came to diagnosing cancer, and that people were dying because of it.
Those working in dementia can only gaze with longing at the comparatively rich data set for cancer. When the first Memory Assessment Services audit was published in 2019, it represented a step change in the quality of data available on dementia diagnosis, treatment and care in the UK.
Postcode lottery in diagnosis
Where you live shouldn’t determine whether you can find out what’s causing your memory problems. Yet it does.
In the wake of COVID-19, you’re likely to wait on average nearly five weeks longer for a diagnosis once you’ve been referred to a memory clinic, undoubtedly exacerbated by service closures and staff redeployment during the pandemic. There’s another statistic on the same page of the audit that’s more worrying however, and it turns out to be a recurring theme: a distinct widening of health inequalities driven by a postcode lottery of diagnostic quality.
The higher average time between referral and diagnosis masks a huge increase in the variation between different services across England and Wales, which has gone from a range of 3-34 weeks to 0-104 weeks.
There are other variations between services that we can’t compare directly to the 2019 audit, but that we know are long-standing issues. For example, you’re more likely to discuss potentially reversible causes of dementia (e.g., sight and hearing loss, alcohol consumption) as part of your assessment now than in 2019, but it still depends on where you live. In some services, everyone can expect to have these conversations, in others no-one can.
Similarly, how likely you are to have more advanced diagnostic tests that can tell you the underlying cause of your dementia, and how long you’d have to wait for those tests, also varies hugely depending on where you live.
This year’s audit gives us an opportunity to see how things have changed over time. Given that the data was collected at the height of the pandemic, it isn’t surprising that things haven’t improved much, but that doesn’t make the insights less valuable.
Only by collecting and publishing this data routinely can we hope to understand where things are working, and where they aren’t. Only with this knowledge can we determine whether the changes we make to how we diagnose, treat and care for people affected by dementia are working.
As a next step, we’re asking that the forthcoming 10-Year Dementia Plan for England includes a mandate to routinely publish data on Memory Assessment Services and, because these services are only one part of the picture, we want to see future data collection expand to encompass primary care, and to be able to adapt to include new service models like brain health clinics.
Alongside this, we’re also calling for national-level data to be made available on:
- people’s age at the time of their diagnosis
- the underlying cause of their dementia
- and information on things like gender, ethnicity, socioeconomic background and educational attainment where we know health inequalities exist.
Together, this will help paint an accurate picture of the state of diagnosis across primary and secondary care, allowing us to measure progress towards our end goal: for everyone in the UK to be able to get an early and accurate dementia diagnosis.