Raising the barriers: An action plan to tackle regional variation in dementia diagnosis in England (APPG on Dementia, 24 October 2023)

Summary

A dementia diagnosis is a fundamental first stage of the dementia pathway. Missing out on an early and accurate diagnosis can have a significant negative impact, for example limiting access to symptom management interventions, ultimately leading to poorer outcomes and increased health and social care costs. 

This inquiry focuses on understanding the scale of impact of regional health inequalities on access to a dementia diagnosis and developing solutions to reduce their influence.

Content

Recommendations

The Group has developed a series of recommendations across the core themes of dementia diagnosis, data, workforce and public health messaging. Collectively these recommendations outline how dementia pathways can be strengthened to enable access and quality care across all settings, communities and regions in England.

Enabling dementia diagnoses

• Each ICS must develop a comprehensive dementia strategy to enable and support the implementation of the Group's recommendations, driven by an overarching target set by the Government to return and go beyond the national 66.7% dementia diagnosis rate.
• All dementia diagnoses must include an accurate subtype. To end regional inequity of access to advanced diagnostics needed to indicate subtype, such as Positron Emission Tomography (PET) brain scans and cerebrospinal fluid (CSF) the Government must drive emerging research and ultimately timely implementation of blood-based biomarker tests. 

Data

• NHS England must continue to review and develop its methods for calculating dementia prevalence and dementia diagnosis rates based on the evolving evidence base regarding the influence of population health indicators on dementia prevalence. The development of more sophisticated calculations of dementia diagnosis rates along these lines will enable system resources to be deployed in increasingly targeted and effective ways, enhancing accountability for performance and improving care for patients.
• A national Dementia Observatory should be created to collate and publish existing data collected across system levels (i.e. nationally, at ICS and sub-ICS level). This should include the development of additional indicators for the improvement of quality and access to a dementia diagnosis, such as dementia subtype. This intelligence can be used to identify targets for improvement where it is most needed. Regional NHS England leadership has the potential to facilitate this, for example by supporting high-performing diagnosis pathways or practices to scale up across an ICS, and hosting regional learning and improvement networks to share best practice.

Public Health and messaging

• OHID data intelligence regarding the scale and spread of associations between deprivation, rurality and estimated dementia diagnosis rates is translated into action. Specifically, this should include targeted public health messaging in regions and localities most in need of improving dementia diagnosis rates. Messaging should focus on tackling reluctance to seek a dementia diagnosis in rural and deprived communities, and local health care systems must work with (the Voluntary, Community and Social Enterprise) VCSE sector to bridge the gap between them and the communities they serve.
• A broader range of regional and local channels for communication must be utilised to reach those who may be lost to system (i.e. living with dementia and unaware of or unable to access diagnostic services). ICSs must bring together the communities they serve to enable regional and local relationships to develop, such as between dementia services, primary care networks, local authorities, the VCSE sector and community bodies such as parish councils, farmer’s unions and faith networks. By bridging the gaps between communities and health services – whether via person-centred transport planning or dissemination of public health information, health inclusion for people living with dementia in the most rural and deprived areas can improve. Making dementia more of a strategic priority for national and local systems will help to raise awareness of dementia and tackle the stigma of a diagnosis as part of a system-wide approach to increasing national diagnosis rates.

Workforce

• Government should ensure the primary care workforce is adequately planned and resourced to enable capacity, including to engage in continuing professional development on the assessment and benefits of dementia diagnosis. GPs should also be enabled to engage with their primary care networks to maintain awareness of their local referral pathways, and trained to an adequate level to facilitate and undertake dementia diagnosis where appropriate. To support this NHS England should consider incentives, such as reinstatement of the dementia screening Quality and Outcomes Framework (QOF).
• Post-diagnostic dementia support services must be available more equitably across England and supported by a named professional to coordinate each individual’s dementia journey. This requires a workforce plan from the Government which is inclusive of allied health professionals and a broader range of non-clinical roles such as social prescribers and dementia advisors. The evidence base for placing a dementia advisor in every primary care practice must be translated into action through each ICSs dementia strategy to increase access to a timely dementia diagnosis and support, particularly in rural and other communities experiencing health disparities. Alternatively, a minimum of one practice advisor (GP or Nurse practitioner) could be appointed per primary care practice to skill up in dementia awareness, assessment and their local dementia pathway.