Alzheimer’s Society: Improving access to a timely and accurate diagnosis of dementia in England, Wales and Northern Ireland (10 May 2023)

Summary

A formal diagnosis of dementia can help people living with the condition and their families gain a better understanding of what to expect and help to inform important decisions about treatment, support and care. Alzheimer’s Society estimate that in England, Wales and Northern Ireland there are over 300,000 people living with dementia who do not have a diagnosis. In this report they highlight barriers to accessing a timely and accurate dementia diagnosis and advocate for practical changes and tangible solutions to overcome them.

Content

The report notes that since the Covid-19 pandemic, dementia diagnosis rates have dropped across England, Wales and Northern Ireland and that recovery to pre-pandemic levels has been slow. It states that:

• in England, diagnosis rates have dropped by approximately five percentage points and stagnated between 61 and 63%.
• in Northern Ireland, the number of people on the dementia register has dropped by around 10%, meaning that diagnosis rates are approximately 60%.
• in Wales, the dementia diagnosis rate has dropped to approximately 50% following the pandemic.

It notes that post-pandemic, there has been a lack of clarity around the causes of the ongoing stagnation in dementia diagnosis rates and the barriers that health and care systems face in delivering a timely, accurate diagnosis of dementia. Seeking to address this issue, the findings of this report were informed by a series of roundtable events intended to gain consensus on what these barriers are. Attendees at each roundtable included people affected by dementia, representatives from NHS trusts, commissioners, clinicians and academics.

Based on its findings, the report makes a series of recommendations, grouped around four key themes, to improve diagnosis:

Workforce and new ways of working

• A multi-disciplinary approach to diagnosis is needed along with innovative ways of working to ease workforce pressure, including remote appointments and upskilling staff.
• Local and national health system leaders must recognise recruitment and retention in relevant roles such as in memory services as part of their overall workforce reviews.

Health inequalities and public health messaging

• Fair access to a dementia diagnosis for all regardless of ethnicity and other protected characteristics, as well as socio-economic status, language, or geographical location must be prioritised. Culturally relevant assessment tools and interpreters (including bilingual assessments for Welsh speakers and assessments for those who are deaf or British Sign Language users) should be introduced and made widely available, and co-production of local diagnosis pathways should reflect the local population.
• Better data collection on the impact of regional and cultural variations should be undertaken at a national and local level to allow for future-proofed commissioning of diagnosis pathways, including for bilingual Welsh-language speakers in Wales.
• An annual diagnosis public messaging campaign should be developed to overcome stigma.

Financial and system pressures

• Local systems should have a named dementia lead accountable for outcomes.
• In advance of new dementia treatments being made available to patients, the National Institute for Health and Care Excellence (NICE) should ensure that guidance on MCI is developed so that people living with dementia are diagnosed at the earliest opportunity and can take advantage of revolutionary new treatments as soon as they are available.
• Dementia pathways across the three nations are routinely underfunded, with commissioning arrangements often disincentivising an increase in diagnosis rates. Local systems should use Leeds Becket University’s ‘Taking Memory Assessment Services (MAS) into the Future’ as a commissioning framework when designing memory services, and align funding for workforce capacity with future demand for services. National health systems should invest in dementia care to help prevent costly dementia crises.
• Dementia stakeholders should push for dementia to be given parity of esteem through equitable prioritisation and funding with other conditions, such as cancer and other mental health conditions.

Future-proofing the diagnostic system

• We need access to subtype diagnoses, an enhanced workforce and an equitable offer to people with all types of dementia.
• National and local systems must increase the profile of dementia and recognise the ever-increasing prevalence of the condition, as a driver for change. People must be diagnosed in the early stages of their dementia, as new treatments will likely only benefit this group.
• People diagnosed with dementia must also be offered the opportunity to participate in research trials.
• Health systems must ensure equitable access to scans for memory assessment services. All diagnoses of dementia should be delivered with information on the person’s specific dementia subtype.
• National health systems should plan for the introduction of blood-based biomarkers to ensure people developing dementia benefit from new treatments.
• Health systems must commit to ensuring that the advent of new treatments for Alzheimer’s disease specifically does not divert resources away from diagnosing and supporting those with other subtypes of dementia. Diagnosis remains important in accessing timely care and support.