Improving access to a timely and accurate diagnosis of dementia in England, Wales and Northern Ireland

Barriers:

Barriers included a lack of multi-disciplinary and innovative approaches to dementia diagnosis; poor pathway planning and development; and challenges with workforce capacity, training and development.

Recommendations:

• 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.

Barriers:

Barriers included regional variation in diagnosis rates across the three nations, with those from rural and/or deprived communities and those whose first language is not English least likely to have timely access to a quality diagnosis. Further barriers were cultural differences and the stigmatisation of dementia as a condition.

Recommendations:

• 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.

Barriers:

Barriers included funding arrangements and commissioning processes; a lack of guidance on post diagnostic care and Mild Cognitive Impairment (MCI); balancing timely with accurate diagnosis; and lack of peri-diagnosis support.

Recommendations:

• 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.

Recommendations:

• 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.