Improving access to a timely and accurate diagnosis of dementia in England, Wales and Northern Ireland
Alzheimer’s Society’s latest report examines the barriers to getting a timely and accurate diagnosis identified by people living with dementia, researchers and clinicians and builds a consensus on recommendations to overcome them.
Published May 2023
What is the report and what does it focus on?
Our report, Improving access to a timely and accurate diagnosis of dementia in England, Wales and Northern Ireland highlights the barriers people living with dementia face in accessing a timely and accurate dementia diagnosis, and advocates for practical changes and tangible solutions.
A group of 27 dementia experts have come together to sign a consensus statement calling for better funded and evidence-based dementia pathways to deliver effective care, support, intervention and treatment.
The report and consensus statement, also available in Welsh, are informed by a series of roundtables held across England, Wales and Northern Ireland. We convened the roundtables to form a consensus on the barriers to the delivery of a timely, accurate, and good quality diagnosis of dementia, and identify solutions to overcome these barriers. The roundtables were attended by people living with dementia, senior researchers and clinicians, and key decision-makers.
A diagnosis of dementia is vitally important in facilitating access to care and support, and we know that 91% of people living with dementia see clear benefits to getting a diagnosis.
Yet not every person living with dementia has a diagnosis – over 300,000 people in the three nations do not have a diagnosis.
This leaves them and their families at risk of crises, such as unplanned hospitalisation, which can have an adverse effect on people living with dementia and their carers’ health and wellbeing, as well as the wider health and social care system.
What are the key recommendations from the report?
The headline consensus statement reads as follows:
- As a collective, dementia stakeholders must come together to advocate for better funded and evidence-based dementia pathways. These pathways must deliver effective care, support, intervention and treatments for all those living with dementia. People living with dementia highlight the value of an early and accurate diagnosis in preparing for the future and this should be a fundamental right.
- Stakeholders should recognise the advent of new, disease-modifying treatments as a driver for immediate system change to increase diagnosis rates.
- National health systems must commit to returning diagnosis rates to pre-pandemic levels and build capacity for going beyond this in future.
What are the identified barriers and recommendations across each of the four key themes?
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.
- 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 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.
- 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 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.
- 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.
- 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.