Are UK health systems dementia ready?
Comparing dementia policy across the
four nations of the UK
Executive summary
The potential arrival of new treatments for dementia presents a substantial challenge for health systems in ensuring they are system-ready to improve diagnosis rates, deliver treatment access and provide patients with follow-up and post diagnostic support.
These treatments are already available in other countries and the changes that are needed across the health systems of the UK to deliver them to patients are complex and multi-faceted.4
The UK is entering this new era for dementia treatment on the back-foot. Diagnosis rates for dementia have fallen below national targets, national strategies and plans have lapsed, many commissioning and clinical guidelines require a refresh, data is poor and incomplete, and action on the modifiable risk factors for dementia in areas such as smoking and obesity has been too slow or non-existent. Only one in four dementia policies across the four UK nations is up to date and being delivered.
Long standing capital investment and workforce shortages in important roles such as neurology, psychiatry and radiology cannot be quickly addressed, particularly when Government finances are so tight. Whilst diagnostic innovation, including blood biomarker tests, present exciting potential, many patients are struggling to access existing diagnostic tests leaving over 300,000 people with dementia currently undiagnosed. Public understanding of dementia remains mixed, with the condition still seen by a sizeable portion of the population as a social care issue that is an inevitable consequence of old age.
If nothing substantial is done to improve dementia diagnosis rates in the UK then the number of people undiagnosed could rise to over a half a million by 2040.
Across the UK work is now needed to accelerate the changes that can make services dementia ready. Scotland has published a new national dementia strategy and is working on some immediate improvement milestones. The NHS in England has set out its work plans for getting services treatment ready. Northern Ireland has a new Executive in place and Wales is developing a successor to the Dementia Action Plan. At a service level, pockets of innovation have grown-up including Brain Health Clinics and Services aimed at diagnosing dementia earlier. Pilots such as those in Wales have supported improved access to scanners and diagnostics.
These are promising developments but clear accountability and delivery commitments are now needed. Each of the individual UK Governments and health systems should by the end of the year commit to and publish a readiness plan for potential new dementia treatments. This should cover the full pathway from action on prevention and public health to reduce or delay the numbers of dementia cases overall, to new enhanced co-ordinated NHS dementia services that bring together the right professional mix and blend of local services with tertiary specialisms to support improved diagnostic and treatment access, as well as easily accessible post diagnostic support and follow-up. Levers such as improvements in diagnosis targets and incentives with a track record of delivering improvements should be used to underpin action.
A dementia diagnosis remains one of the most feared by the public. The potential arrival of new treatments creates an opportunity to improve patient outcomes. But to do so will require health systems to be dementia ready quickly. Urgent action is now needed to make them so.
Summary of recommendations
- System readiness plans – All UK nations should publish national plans for system readiness in relation to dementia treatments by the end of 2024. A UK wide formal cross border collaboration to share good practice on service set-up and design should be established to accelerate processes between nations
- Investment in diagnostics and services – The publication of system readiness
plans should be supported by Governments through (a) new investments in dementia diagnostics at future national Budgets; (b) funding to support the development of new enhanced dementia services – building and learning from service pilots that have proven effective such as Brain Health Clinics and Brain Health Services working alongside Memory Assessment Services - Public health and prevention – Governments in each nation should establish
cross Government public health taskforces aimed at improving healthy life expectancy and the health of the nation. Public health agencies in all nations should run new brain health public campaigns to support stronger preventative action - Workforce – As part of system readiness plans for new treatments Governments and health systems should set out the transparent workforce requirements for delivering new services, including neurologists, psychiatrists and radiologists, and updated care pathways that will need to be commissioned
- Post diagnostic support – Health service commissioners should work with primary and community care to develop a local service map for post diagnostic support options for people diagnosed with dementia. This should be coordinated with local agencies and voluntary sector partners so a full range of services are available for those living with dementia
- Targets – Governments and health systems across the UK should commit to annual improvements in diagnosis rates of at least 1% per year to 2040 to help reduce the numbers of undiagnosed people with dementia
- Incentives – Governments should introduce an incentive for dementia screening in primary care – which was successful in the past in improving diagnosis rates – through the Quality and Outcomes Framework to help support improvements in diagnosis rates8
- Digital – Use new digital tools such as a revised NHS Health Check in England to engage people in preventative activities that can help support improved brain health, as well as tests and tools that can be used to identify the early signs and symptoms of dementia and generate referrals for further investigation and diagnoses
Lilly has provided sponsorship funding to support the research, development and publication of this report. Full editorial control and independence rests with Future Health. Lilly has had no influence over the content or reccomendations contained within the report.