What memory clinics miss – and why it matters for people waiting for answers

When someone is referred to a memory clinic, the clinical question is usually straightforward: is this dementia? But the people sitting in those waiting rooms – and the family members beside them – are often already struggling with symptoms that standard assessments were never designed to capture. Anxiety, irritability, apathy, sleep disturbance, carer exhaustion. These needs don't wait for a diagnosis.

The Oxford Brain Health Clinic (OBHC) was established within Oxford Health NHS Foundation Trust to test a different approach: a more detailed assessment pathway that generates research evidence alongside routine care. After several years of operation, two linked studies set out to answer a practical question – does this richer pathway actually improve what clinicians know, and does it reveal needs that would otherwise go unrecognised?

Our approach and partners

Working with psychiatrists from Oxford Health NHS Foundation Trust, the research team conducted two studies using real-world data from the OBHC pathway.

In the first, 100 anonymised cases – split evenly between the OBHC and routine memory clinic pathways – were reviewed by psychiatrists, who rated their diagnostic confidence for each. In the second, routinely collected data from 242 OBHC patients were analysed to examine neuropsychiatric symptoms and caregiver distress at the point of diagnostic assessment.

This combination – clinician perspectives alongside patient and carer outcomes – was designed to generate evidence that could directly inform how memory services are organised and delivered.

What we found – and why it matters

1. The enriched pathway improved diagnostic confidence. After adjusting for cognitive status, psychiatrists reported greater confidence in their diagnoses when reviewing OBHC cases compared with routine memory clinic cases – even though both pathways relied on broadly similar core assessments.
2. Neuropsychiatric symptoms were the norm, not the exception. Among 242 patients assessed through the OBHC, 84% experienced at least one neuropsychiatric symptom at the point of assessment. These included anxiety, apathy, irritability, and sleep disturbance.
3. People without a dementia diagnosis were struggling just as much. Patients who received no memory disorder diagnosis showed levels of neuropsychiatric symptoms and caregiver distress comparable to those diagnosed with dementia – a finding that highlights a group with substantial unmet needs that existing pathways rarely address.
4. Some assessments served a different purpose than expected. Clinicians identified certain components of the OBHC pathway – such as frailty and neuropsychiatric measures – as less useful for making a diagnosis but valuable for understanding patients' wider needs and planning longer-term support.

These findings were presented at the Alzheimer Europe Conference 2024 and the Alzheimer's Association International Conference 2025.

What this means

The evidence challenges a diagnosis-or-nothing model of memory assessment. People attending memory clinics – and their carers – often carry a significant burden of distress and behavioural symptoms well before any diagnosis is confirmed. For some, the assessment itself may be the only point of contact with specialist services. If that contact focuses solely on whether dementia is present, an opportunity to identify and respond to wider needs is lost.

For health services, the implication is clear: memory clinic pathways need to look beyond the diagnostic question. Assessment data already being collected can reveal who needs support – if services are designed to act on it.

What needs to happen next

The most pressing gap is for people who attend memory clinics but leave without a dementia diagnosis – particularly those with mild cognitive impairment or elevated risk factors. At present, these individuals are largely discharged without structured follow-up or early intervention.

A review is now underway to map community-based interventions and prevention approaches that could be offered to this group. As longitudinal follow-up data from the OBHC become available, these will help clarify longer-term risk trajectories and identify who would benefit most from earlier, targeted support.