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Long read

The role of integrated care systems in improving dementia diagnosis

Authors

Key messages

  • High-quality dementia diagnosis and care involves many different parts of the health and social care system working together effectively. Integrated care systems (ICSs) were created to achieve this kind of whole-system approach.

  • Early and accurate diagnosis means people living with dementia can access support that can help to improve their quality of life, and potentially treatments that can help with managing symptoms. Diagnosis also enables people and their families to plan ahead.

  • Improvements in dementia diagnosis in the three case study sites involved in our research are the result of several years’ work and are not attributable to the introduction of statutory ICSs in 2022. However, their broad emphasis on working together as a system over the past decade has helped to create positive conditions for improvement.

  • Key enablers of improvement in the sites we examined included efforts to strengthen relationships between primary care, memory clinics and other services; public awareness-raising activities; and the introduction of new extended roles for GPs (for example, to improve diagnosis in care homes).

  • ICSs can contribute to improved dementia diagnosis by:

    • ensuring all partner organisations have shared priorities and an agreed plan for delivering improvement

    • providing visible cross-system leadership and effective governance arrangements for overseeing the delivery of the plan

    • connecting people working in different parts of the system, building mutual understanding and reinforcing a culture of collaboration

    • sharing learning and spreading good practice

    • supporting action at scale across larger geographies

    • addressing inequalities by ensuring sufficient attention is paid to improving diagnosis rates in underserved communities.

  • In the longer term, ICSs need to build the capabilities and processes required to support testing new approaches, learning, and scaling and spreading successful innovations. This will need support from the government, NHS England and other national bodies.

    About this project

    The work for this project was funded by Alzheimer’s Society. This output was independently developed, researched and written by The King’s Fund. All views are the authors’ own. 

Introduction

Integrated care systems (ICSs) were introduced in England to achieve two main goals: to ensure that people using health and social care services experience better, more co-ordinated care; and to bring about the long-called-for shift towards a greater focus on prevention and early intervention. These two goals – care co-ordination and prevention/earlier intervention – are both highly pertinent for people living with dementia.

Dementia is an umbrella term for a group of symptoms that increasingly affect a person’s memory, language, problem-solving capabilities and behaviour. These symptoms usually become progressively worse and there is currently no known cure for dementia. It can be caused by a range of diseases that damage the nerve cells in the brain. There are several types of dementia, of which Alzheimer’s disease is the most common.

Alzheimer’s Society estimates that there are currently around 900,000 people living with dementia in the UK. Unlike other major conditions, there is no national clinical pathway for dementia, and despite there being a national target, there is wide variation in dementia diagnosis rates across England.

In Autumn 2023, Alzheimer’s Society commissioned The King’s Fund to explore the development of ICSs through the lens of dementia diagnosis: to consider what opportunities ICSs present to approach dementia differently and to improve diagnosis rates by doing so. We explored the enablers and barriers to improving dementia diagnosis through interviews with stakeholders and people affected by dementia in three case study ICSs.

Why is timely and accurate diagnosis important?

Although there is currently no known cure for dementia, receiving a diagnosis is key to enabling people living with dementia to access care and support. While it can feel daunting or frightening for some, getting a diagnosis can help individuals and families to better understand the condition and to plan for the future – which is particularly important given that many people need to draw on their own resources to help cover social care costs.

Receiving a diagnosis soon after symptoms of the disease (eg, short-term memory loss or changes in behaviour) develop can be beneficial for several reasons.

Accurate diagnosis also helps to support improved services. ICSs and national bodies can use diagnostic data to identify targets for improvement, plan investment in additional advanced diagnostic services to reduce regional inequalities, and enhance understanding of the links between population risk factors and specific types of dementia. There is also increasing evidence that earlier diagnosis can lead to savings on long-term care costs, for example, where people are supported to continue to live independently.

However, it can be difficult to accurately diagnose dementia. In part, this is because the symptoms of dementia can often be mistaken for other conditions, such as depression, stress and menopause. In addition, there are many different types of dementia (eg, vascular dementia, Alzheimer’s disease and dementia with Lewy bodies), all of which present with different symptoms, are diagnosed differently and require different treatment.

Our research

The aim of this project was to explore the opportunities ICSs have to improve dementia diagnosis. The research primarily involved three case study ICSs:

  • Staffordshire and Stoke-on-Trent ICS, which reports some of the highest dementia diagnosis rates in England

  • Cornwall ICS, which has recently demonstrated improvements in dementia diagnosis rates

  • North East London ICS, which has focused on improving dementia diagnosis rates within communities that are underserved.

Our research methods included in-depth interviews in each of these sites, visits to dementia support services to understand lived experiences, and a roundtable discussion with a range of local and national stakeholders. The box below provides further details on methods.

What are the challenges?

Through our research we explored the challenges that integrated care systems (ICSs) can face in improving dementia diagnosis. This identified three main themes:

  • awareness and stigma

  • linkages across the system

  • prioritisation and investment.

These themes broadly echo other findings around potential barriers to improving diagnosis rates, including those highlighted by the All-Party Parliamentary Group on Dementia in its Raising the barriers report.

Awareness and stigma

Societal stigma around dementia is a longstanding challenge and continues to have an impact on diagnosis rates in local systems. We heard this is often a result of poor understanding and awareness, from both clinicians and the public, of the support options available once someone has received a diagnosis. 

Links across the system

Supporting individuals during the diagnosis process and subsequent care involves people, professionals and organisations from across the health and care system – from unpaid carers and primary care to more specialist services, social care and the voluntary, community and social enterprise (VCSE) sector.

There can be poor links between these various parts of the system, which impact people’s experiences as they and their family navigate getting a diagnosis and finding out about support available. In some places, these poor links can contribute to inappropriate referrals to memory services (for example, when people’s risk of having dementia is very low). This can be detrimental to both individuals and services, especially with services already experiencing high demand. 

Given the number of people and organisations involved, this also means there can be variation in ownership, leadership and prioritisation at place and system level – with people not always understanding others’ respective roles, and ambiguity over which organisations are leading which elements of work.  This ambiguity can sometimes lead to an absence of overall leadership for the management and improvement of dementia services, and a lack of cohesion among system partners.

'Sometimes I think the system partners expect the ICB to do everything around dementia, and clearly a lot of factors aren't in our control and a lot of other things need to be commissioned to support people... Happy to work in partnership to make things happen, but there's a limit to what our remit is and those remits aren’t necessarily fully understood.'
Commissioner, Staffordshire and Stoke-on-Trent ICS

Prioritisation and investment

Despite the inclusion of a dementia diagnosis target in the NHS’s national priorities for 2023/24, the extent to which improving dementia diagnosis is prioritised within ICSs varies. In some ICSs, dementia is actively prioritised across the system, with strategies developed by all relevant partners. In other ICSs, dementia prioritisation is closely linked to historical commissioning decisions in each of the places that make up the ICS, leading to local variation in service provision.

This variation in prioritisation can also directly link to variation in investment decisions across services amid the array of competing pressures locally. This challenge can be compounded by the fact that funding for dementia is split across many organisations within a system.

'One of the things about dementia funding is that it's not in one place. It's partly in the local authorities, partly in physical health, and partly in mental health. In mental health we have the responsibility for the diagnostic target but that's just the tip of the iceberg and we don't actually have the majority of the funding for dementia.'
Commissioner, North East London ICS

Variation in prioritisation and investment can also contribute to different clinical pathways for people living with dementia, for example, with some areas providing more rapid access to specialist services or diagnostics than others.

This challenge in accessing some services could become more pronounced if the National Institute for Health and Care Excellence (NICE) approves disease-modifying treatments for Alzheimer’s disease requiring specialist diagnostic tests. Advances in diagnostics currently in the research stages, such as blood tests, could also fundamentally change future pathways for dementia diagnosis. 

What does ‘good’ dementia diagnosis look like?

Addressing these challenges requires improved collaboration across the health and care system, and a renewed focus on prevention and early intervention. Through our interviews with stakeholders and people with lived experience, we identified several examples of good practice in dementia diagnosis, as well as ideas for how it could be improved further.

Working collaboratively

Working in a joined-up way across sectors and organisations is key to enabling good practice at a clinical level. In the ICSs included in our research, efforts to support good links between different parts of the clinical pathway have helped to minimise inappropriate referrals and facilitate accurate and timely diagnoses. Often this took the form of individual service managers or clinicians demonstrating system leadership by making concerted efforts to build relationships and mutual understanding across service boundaries, for example, between memory clinics and primary care.

Although stakeholders felt that the introduction of statutory ICSs had not yet had a significant impact on dementia diagnosis pathways or ways of working at the clinical level, the broader emphasis on working together as a system over the past decade has helped to create the conditions for change.

For example, in Staffordshire and Stoke-on-Trent, there is a legacy of this way of working due to previous joint commissioning arrangements as well as key individuals investing their time in building stronger relationships across boundaries over several years.

'I think we've got here because of the 10 years of other people's work essentially... [it's been] a sustained effort [to work in a joined-up way].'
Commissioner, Staffordshire and Stoke-on-Trent ICS

Stakeholders also saw the introduction of new roles designed to facilitate more joined-up ways of working and to improve diagnosis rates as being another important mechanism that had helped support improvement in the three case study ICSs (see boxes, below).

Prevention and early intervention

Awareness-raising activities

Meaningful and regular engagement with patients and the public provides opportunities for health and care system leaders and clinicians to raise awareness about dementia and destigmatise the condition among their local communities. As a result of greater awareness, people are better equipped to identify signs and symptoms of the condition early, which can help to facilitate a timely diagnosis. Informal carers can, and in many cases do, play a key role in this by spotting changes in the person they care for and enabling an early discussion with a GP.

'I knew something was wrong a year before we got the diagnosis... but the length of time between appointments really dragged out the whole process.'
Carer, Cornwall

Alongside regular community engagement events, national campaigns can help to raise awareness among the public of the early signs and symptoms of dementia. Roundtable participants suggested that there are valuable lessons to be learnt from the success of the FAST campaign for stroke awareness that could be used to develop a national campaign on dementia awareness.

Engaging with underserved communities

Dementia diagnosis rates vary significantly between communities. For example, people from Black, Asian and minority ethnic communities often face delays in diagnosis and barriers accessing services. Addressing these inequalities means engaging with underserved communities and ensuring that all groups experience improvements in diagnosis rates and pathways. System leaders and clinicians need to work with local communities to understand the barriers that prevent specific groups from accessing a dementia diagnosis. ICSs can use insights gained through such engagement to design accessible and inclusive dementia services, supporting the wider national focus on reducing health inequalities.

Using data to identify underserved communities and engaging proactively with these communities has been a key component of the approach to improving dementia diagnosis in all three case study sites. For example, in one area of North East London, a local mental health team has adopted a participatory action research approach. This team also commissioned a researcher to work with the local Turkish, Vietnamese and Orthodox Jewish populations to understand their specific barriers to accessing dementia services. This work enabled the team to secure funding to train dementia champions in these communities.

Proactive risk profiling

In Staffordshire and Stoke-on-Trent, some GP practices are proactively scanning their patient records to identify at-risk patients and inviting them to discuss potential memory issues or signposting them to an engagement day to learn more about dementia diagnosis and support.

Post-diagnosis support

Alongside improving diagnosis rates, ensuring dementia support services are adequately resourced and funded across the ICS is crucial to ensuring those services can support people living with dementia to live as well as possible and to manage their condition. Interviewees acknowledged that efforts to increase diagnosis rates, which uncover additional health and care needs in the population, must be balanced with an increase in the availability of quality support, and investment in services, for those in need.

'When people aren’t diagnosed that’s a hidden problem, but now we’re uncovering it and can’t ignore it. There will need to be more investment.'
Commissioner, Cornwall ICS

Ensuring that high-quality support services are well publicised and readily accessible for people living with dementia also plays an important role in reducing stigma and improving diagnosis rates. In our research, we heard that being unaware of, or unable to access, good support services adds to people’s reticence to come forward for diagnosis.

For people living with dementia and carers, knowing what the diagnosis pathway looks like, and being able to make appointments in a timely manner, is also key to minimising the stress of diagnosis. Equally important is the role that GPs and other professionals can play in offering information and signposting to support at the point of diagnosis and beyond. This can help to ensure people living with dementia and their families do not feel alone in navigating life post-diagnosis.

'We were out on a limb. It was unclear who we should go to for advice… we need more access to centres like Citizens Advice, and GPs need to signpost to support…'
Carer, Cornwall

In some parts of North East London, named ‘dementia navigators’ provide essential post-diagnosis support, helping people living with dementia and their families navigate the numerous health and care services, as well as other services, they may benefit from.

What role should ICSs play in improving dementia diagnosis? 

While improvements have been made in some parts of England, there is still more work to be done to ensure everyone has access to timely and accurate dementia diagnosis. By bringing together partners from across the health and social care system, integrated care systems (ICSs) can play a central role in driving this improvement.

Visible prioritisation

With the number of people living with dementia in the UK expected to rise from 900,000 to 1.6 million by 2040, improving dementia diagnosis and care requires visible prioritisation across local systems, and ICSs create a mechanism through which all partner organisations can come together to do this. For example, Cornwall ICB identified dementia as a priority in the integrated care strategy and organisations across the ICS have focused on improving diagnosis rates.

Working together through ICSs could also help partner organisations to agree more granular priorities for improvement and to develop a single delivery plan for acting on these. In Cornwall, partners in the ICS have developed a system-wide dementia strategy that describes a set of ambitions and how each organisation will contribute to meeting them. Elsewhere, other system-wide strategies, such as older people’s strategies, may play a similar role.

'We've got a really clearly set out plan of action that involves lots of different organisations working together, which I think is really positive. I think if we didn't have that, we would just continue in a situation where we've got piecemeal bits of work happening in different places... But now we've got something that's really robust, that will be properly managed.'
Social care commissioner, Cornwall ICS

Leadership and governance

Having clear arrangements for leadership of system-wide change is essential to make progress. This leadership may come from a dementia programme board with cross-system membership and/or through a designated dementia lead in the ICB.

Staffordshire and Stoke-on-Trent ICS is creating a dementia programme board to help enable system-wide discussion and effective decision-making in the future. In Cornwall, interviewees stressed the importance of having a robust system-wide governance structure to oversee the single delivery plan for implementation of the dementia strategy. Interviewees from the Cornwell ICS saw the appointment of a clinical lead for dementia for the ICS in Cornwall as highly impactful.

'[The] clinical lead for the ICS is really passionate about supporting people with dementia and has given us some really strong leadership [in terms of] what the needs of people with dementia are, what her expectations for people with dementia are, and [how] to raise the agenda of dementia in Cornwall.'
Commissioner, Cornwall ICS

Facilitating collaboration and partnership

As stressed in the previous sections, improving dementia diagnosis requires effective collaboration between the NHS, local government, VCSE sector organisations and other partners. Many interviewees felt ICSs can play a valuable role by facilitating that collaboration, helping to connect people working in different parts of the system, building mutual understanding and reinforcing ways of working that underpin a culture of collaboration.

'Because sometimes there are people out there that you don't know exist and [the ICS] can be that central point to signpost you to different people... they're that central conduit of knowledge.'
Clinician, Staffordshire and Stoke-on-Trent ICS

'You need someone like a conduit to bring these systems together, because it feels very much like us and them at times and it shouldn't be that way.'
Service manager, Staffordshire and Stoke-on-Trent

Alongside this role as a convener and facilitator, some interviewees said they would like to see the ICB playing a more assertive role in relation to providers, pushing for closer collaboration and improvement where this is not already happening. The direct involvement of senior leaders from provider organisations in ICBs and ICSs is one of the key features that distinguishes these from previous bodies; interviewees saw this as potentially helpful in terms of driving change in those organisations involved in delivering dementia care.

'One of the difficulties with dementia is you need an organisation that isn't one of the providers, but sits between the providers, to 'bang heads' together.'
Commissioner, North East London ICS

 Sharing learning and spreading good practice

ICSs cover large populations (between 500,000 and three million people) and within a single system there can be considerable variation in terms of the approach taken to dementia diagnosis and care (reflecting the different histories and investment patterns referred to above). One way in which ICSs can add value is to support learning between the local places within their footprint.

For example, in North East London the ICS has recently established a dementia improvement network, bringing together professionals from across the seven places that make up the ICS, as well as carers of people living with dementia . Interviewees in this system and elsewhere were clear that the purpose of coming together at ICS level should not be to prescribe standardised service models or pathways for dementia diagnosis – as these can vary for clinically appropriate reasons – but rather to stimulate conversations about what learning could be usefully shared and, where appropriate, to help spread approaches that are working well more widely.

'The dementia improvement network [at the ICS level] will be a helpful mechanism for sharing best practice and formalising relationships that already exist.'
Commissioner, North-East London ICS

Using resources differently

Part of the rationale for creating ICSs was to make better use of the collective funding and staff available across an ICS. This is particularly relevant for dementia and other conditions where the resources in question are split across multiple organisations in the NHS, local government and VCSE sector.

In our research sites, there had not yet been any significant shifts in spending patterns since ICSs took on their statutory form in 2022, but some interviewees did see the ICS as providing a structure that could enable this to happen in future. For example, this could involve ICS partner organisations making a collective strategic choice to shift resources upstream, placing greater emphasis on prevention and early diagnosis of dementia.

Pooling resources across organisations can help to underpin a collaborative approach to dementia diagnosis and care. In some sites, the transition to statutory ICSs has caused some disruption to existing joint commissioning arrangements between the NHS and councils. Re-establishing mechanisms for resource pooling will be important as systems mature.

Supporting action at scale

Some of the work that needs to be done to improve dementia diagnosis can potentially be done once (at system level) rather than multiple times (at place level), delivering economies of scale. Similarly, initiatives being led by individual organisations or places may achieve wider impact through ICSs providing leadership or practical support. For example, in Staffordshire and Stoke-on-Trent, the ICS had played a role in supporting events promoting public awareness of dementia (described in ‘What does good dementia diagnosis look like’, above). Other interviewees felt ICSs could help to co-ordinate training and education opportunities aimed at GPs and other clinicians, or provide support to make it easier for clinicians to take part in these.

Tackling health inequalities

Reducing health inequalities is one of the four core purposes of ICSs described by NHS England; as such, a key role for ICSs in relation to dementia diagnosis should be to support partner organisations to identify communities (defined by geography or other characteristics) where the diagnosis rate is lower than expected and to improve the accessibility of services to these groups.

Improving diagnostic rates in underserved communities needs to involve local engagement to understand the barriers experienced by specific communities. This is often best led at place rather than system level. For example, in North East London, the work on improving dementia diagnosis among underserved communities described above has been led largely at borough level. However, the provision of funding and other forms of support by the ICS can help local work like this to have greater impact.

What needs to happen now?

The extent to which ICSs make progress in delivering improvements for people living with dementia can be seen as a litmus test of their ability to fulfil their original purpose – to address system-wide challenges that cannot be solved by one organisation, sector or profession alone. Dementia poses exactly this kind of challenge for the health and care system as well as being a major health concern for the population. 

Progress so far has been mixed. The two years since ICSs took on their current statutory form have been among the most challenging for health and care services since the NHS was founded. In this context, it is unsurprising that the examples of improvement we looked at in this research tended to have longer roots, pre-dating the formal existence of ICSs. However, the underlying shift towards system working over the past decade has been part of the improvement journey and ICSs are now the vehicle for taking this forward. 

In the short term, ICSs can play a crucial role by helping local organisations agree shared priorities for dementia and a plan for delivering improvement, and then providing visible cross-system leadership and effective governance for overseeing the delivery of this plan. 

In the longer term, ICSs need to be systematically building capacity across the system for testing new approaches, learning, and scaling and spreading successful innovations and ways of working. The possibilities regarding dementia diagnosis and care may change significantly over the coming years, and ICSs need to have the infrastructure in place to support ongoing adaptation and improvement as changes occur. 

To make the most of their potential, ICSs need to be supported and permitted to work differently. Government and NHS England have an important role to play here – ensuring that national accountability and policy helps rather than hinders collaboration and partnership working in local systems. Doing so will give ICSs the best chance of delivering meaningful improvements for people with dementia and other long-term conditions.