Together, the two reports set out a coherent programme of reform across diagnosis and treatment. These reforms are designed to:

• ensure diagnosis is early and accurate
• support consistent access to effective dementia drugs and non-drug interventions
• reduce inequalities and unwanted regional variation 
• strengthen systems’ readiness for future innovation in diagnosis and treatments
• deliver better outcomes for people living with dementia and their families.

To do this, we need:

• clear targets to set a national ambition and local accountability
• strengthen clinical guidance and standardise pathways
• invest in and support the dementia workforce
• strengthen dementia data and monitoring
• build systems ready for innovation.

Further reading on the hub:

• Top picks: Key patient safety resources for people with dementia

1 Alzheimer's Society: Checklist for possible dementia symptoms

This checklist has been developed by the Alzheimer’s Society to allow patients to check symptoms that could be a possible sign of dementia. Endorsed by the Royal College of General Practitioners (RCGP), it is a simple tool to help patients and their families clearly communicate their symptoms and concerns to a GP or other healthcare professional.

2 Seeing the unseen: Rethinking dementia diagnosis

Across 2024 and 2025, Alzheimer’s Research UK surveyed more than 500 people affected by dementia and over 160 healthcare professionals to understand the realities of diagnosis. This report shares findings from this process and considers what works, what gets in the way, and what needs to change. 

3 Health and social care support for people with dementia

The Care Quality Commission (CQC) looked at people's experiences of living with dementia when using health and adult social care services, including the experiences of families and carers. It sets out the main themes that influence whether an experience is good or poor, and what health and care services are doing to improve these experiences. CQC will use the findings in this report to help shape their work to define what good care looks like for people with dementia and inform the next phase of CQC’s Dementia Strategy.

4 Keeping patients with dementia safe: an interview with Alison Keizer and Fran Hamilton

When people with dementia enter a new healthcare setting, the environment may be confusing and difficult to navigate. They may be unable to use their usual coping strategies and have difficulty communicating their needs and concerns to staff. This can present a wide range of risks to their safety while accessing care.

In this interview, Alison Keizer, trust-wide Dementia Lead, and Fran Hamilton, Occupational Therapist and Deputy Dementia Lead at Sussex Community NHS Foundation Trust, describe the patient safety issues affecting patients with dementia and suggest how they can be supported to reduce these risks.

5 World Alzheimer Report 2025: Reimagining life with dementia – the power of rehabilitation

This report from Alzheimer's Disease International explores the important topic of dementia rehabilitation, combining expert essays and real-world case studies from multiple countries globally to examine how the concept is defined and implemented, as well as practical considerations of how to best adapt rehabilitation practices for people living with dementia in different contexts. 

6 National Audit of Dementia: Spotlight Audit in Memory Assessment Services 2023/24

This report examines waiting times, access to assessments, treatment, and post-diagnostic support for people with dementia in memory assessment services. The results indicate that there is still a great deal of variation between services in key results such as average waiting time for patients, the proportion of patients diagnosed with dementia, and the provision of post diagnostic support and therapy.

7 The role of integrated care systems in improving dementia diagnosis

The Alzheimer’s Society commissioned The King’s Fund to explore the development of Integrated Care Systems (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. The research team explored enablers and barriers to improving dementia diagnosis through interviews with stakeholders and people affected by dementia in three case study ICSs.

8 Alzheimer's Society: 'This is me' leaflet

This simple leaflet was developed by the Alzheimer's Society for anyone living with dementia, or experiencing delirium or other communication difficulties. It provides a central place where those closest to the person can fill in key information about them, such as their preferred name, cultural background, routines and likes and dislikes. The leaflet can then be shown to health and social care professionals in new and unknown settings to help them better understand the person and deliver care that is tailored to their individual needs.

9 Dementia UK: Making the home safe and comfortable for a person with dementia

Dementia can have a significant impact on a person’s daily life, including how well they function within their home. Memory issues or problems recognising and interpreting the objects around them can cause the person frustration or create safety issues. Dementia UK have produced a leaflet with tips and guidance on how to make the home more safe for someone with dementia.

10 Alzheimer's Society: Tips for carers - questions to ask the doctor about antipsychotics

Antipsychotic drugs may be prescribed for people with dementia who develop symptoms such as aggression and psychosis. This webpage from the Alzheimer's Society provides information on the prescription of antipsychotic medications for people living with dementia. It describes their potential side effects and includes a list of helpful questions that carers should ask healthcare professionals before the person they care for is prescribed antipsychotic medication.

11 Assessment, diagnosis, care and support for people with dementia and their carers: A national clinical guideline

These national clinical guidelines from Health Improvement Scotland, the first to be published in nearly 20 years, provide recommendations on the assessment, treatment and support of adults living with dementia. It calls for greater awareness of pre-death grief for people with dementia, their carers and their loved ones, as they fear the loss of the person they know. To accompany the guidelines, a podcast has been produced by Health Improvement Scotland speaking to professionals, including Dr Adam Daly, Chair of Healthcare Improvement Scotland’s Guideline Development Group and a Consultant in old age psychiatry, and Jacqueline Thompson, a nurse consultant and the lead on pre-grief death for the guideline.

12 Alzheimer’s Society: Improving access to a timely and accurate diagnosis of dementia in England, Wales and Northern Ireland

A formal diagnosis of dementia can help people living with the condition and their families gain a better understanding of what to expect and help to inform important decisions about treatment, support and care. This report from the Alzheimer's Society highlights the barriers to accessing a timely and accurate dementia diagnosis and advocate for practical changes and tangible solutions to overcome them.

13 The current state of dementia diagnosis and care in England

The current dementia care system remains fragmented, underfunded, and difficult to navigate, leaving many individuals and families unsupported. In response to these systemic challenges, Care England, in partnership with Dementia Forward and care providers, conducted a national survey in January 2025. This initiative aimed to capture the experiences of people living with dementia, their families, and care staff. The findings highlight significant gaps and inequalities in the dementia care pathway and inform a set of urgent policy recommendations.

14 Raising awareness of normal pressure hydrocephalus: an often misdiagnosed condition

Normal pressure hydrocephalus (NPH) is a progressive neurological condition that comes under the dementia umbrella. In NPH, the cerebrospinal fluid-filled ventricles within the brain expand and distort the surrounding tissues. This process causes the neurological symptoms of NPH. Unlike other forms of hydrocephalus, NPH does not result in significantly raised intracranial pressure. NPH is often misdiagnosed as it is similar to neurodegenerative conditions such as Parkinson’s disease and other causes of dementia, such as Alzheimer's disease. However, unlike these other conditions, if diagnosed early there is an effective treatment that can significantly slow disease progression and potentially improve, or even reverse, symptoms in some people. 

15 The training gap: a hidden injustice in dementia care and how to fix it

This report from Alzheimer's UK reveals huge gaps in dementia training across social care: half of staff receive just one to two hours of dementia learning despite 70% of care home residents living with the condition. It argues that these shortfalls in training are leaving social care staff unprepared, unsupported, and putting people with dementia at risk of inadequate care. It calls on the government to build a bold and ambitious dementia plan, which includes mandatory dementia training for care staff.

16 Alzheimer's Society: Unlocking the door to dementia diagnosis and treatments

Systems designed to diagnose and support people with dementia are struggling to keep pace, with delays, inequalities and missed opportunities far too common. Too many people have a poor experience, wait too long for a diagnosis and receive less treatment and support than clinical guidance says they should. Everyone with dementia has the right to an early and accurate diagnosis and the best available treatments. Alzheimer's Society’s two 'Unlocking the door' reports lay out a stark reality – and a clear programme of reform for England, Wales and Northern Ireland.  

For more resources, take a look at our Dementia area of the hub.

Do you have a resource or story to share about dementia or a related condition? Could your insights or experiences help improve patient safety? Leave a comment below (join the hub for free first) or contact us at content@pslhub.org.

Diagnosis matters

Nine in 10 (91%) healthcare professionals agreed a formal diagnosis benefits patients, and almost all (98%) said it benefits families and carers. Respondents recognised the need for an early diagnosis “so that treatment can start”, even in the absence of a cure. For people with dementia and their loved ones, gaining insight into the changes in behaviour also helped with their own feelings about the situation. The ability to put a “name to it” and have a clear understanding of the condition was seen as crucial for managing the situation effectively.

But the system isn’t working as it should

Fewer than a third (27%) of healthcare professionals felt current diagnostic pathways are fit for purpose. Respondents described the system as “appalling”, “shameful” and “broken”, with many people “left to come to terms with the diagnosis alone.” They consistently highlighted a lack of funding and staff, describing services as “under-resourced”, with “not enough staff to run clinics due to a massive rise in referrals.”

Staff are struggling to provide the care they want to give

Fewer than half (43%) of healthcare professionals feel able to provide patients with the best level of care. Respondents spoke of a lack of “seamless communication between health and social care services” which often leaves people to “fall through the cracks” and leads to “delays in diagnosis, inconsistent care, and confusion for families who are left trying to coordinate everything on their own.”

Families face disjointed and confusing journeys

People living with symptoms of dementia described a gradual and often confusing journey. One in three said their symptoms had been present for more than a year before help was sought. Respondents described feelings of frustration and a “loss of control” over their lives, with guilt and fear of “becoming a burden.” Somone living with a dementia diagnosis described the wait as “tedious” and “worrying” as they recognised their symptoms were increasing in frequency and severity.

People wait too long for a diagnosis

Sadly, one in five people (22%) were still waiting more than two years for a diagnosis after visiting their GP for help. One respondent, who is still seeking a diagnosis, said: “My mum is struggling with day-to-day life, and there is nothing we can do about it. We can’t even officially put a name to it. It’s devastating watching what is happening with no answers, no support. We desperately need the reassurance of a diagnosis, so at least we know.”

Based on these insights, the report outlines five key priorities to build a diagnosis pathway that is efficient, equitable, and supportive for everyone:

1. Earlier, faster and more accurate diagnosis: cognitive assessments, imaging, diagnosis and support should be provided together during a single visit to a “one-stop shop” clinic – reducing fragmentation and speeding up care.
2. Consistent and integrated diagnosis: diagnostic pathways should be standardised across regions, with shared digital patient records. Where appropriate, memory assessments should be provided in the community, via home visits, outreach clinics and virtual consultations.
3. Improved pre- and post-diagnostic support: dedicated support services should sit alongside clinical appointments, to help guide people through the diagnosis process and beyond.
4. Investment in people and infrastructure: the Government and NHS leaders must commit to targeted investment for more staffing, infrastructure and training in dementia services.
5. Improved access to advanced diagnostics: diagnosis is being held back by outdated assessment methods and limited access to technology – services need to be future-proofed and made ready to rollout promising next-generation tests on the way, such as blood tests to detect Alzheimer’s disease.

The report is divided into five parts.

• The introduction defines dementia rehabilitation, explaining why it is vital for people living with dementia, and issues around accessibility.
• Section 1 looks into the core components of rehabilitation, namely person-centred, goal-oriented, and collaborative approaches.
• Section 2 delves into strategies and methods to support the attainment of rehabilitation goals, providing practical techniques to implement a rehabilitation goal.
• Section 3 tackles the implementation of rehabilitation across various environmental settings and stages of dementia.
• Section 4 discusses system readiness for rehabilitation, taking a critical look at what can and should be done for rehabilitation to become a more mainstream part of post-diagnostic care for dementia in various contexts

The report also makes the following recommendations:

• Rehabilitation should be embedded within national dementia plans (NDPs) – and implemented. Encouragingly, 65% of current national dementia plans mention rehabilitation, but with 75% of World Health Organization (WHO) member states yet to develop national plans, Alzheimer’s Disease International (ADI) calls on all governments and stakeholders to recognise, embed, and implement rehabilitation into their strategic responses to dementia, in alignment with Action area 4 of the WHO’s Global action plan on the public health response to dementia, namely ‘diagnosis, treatment, care and support’.
• Rehabilitation should be a right. Dementia is recognised as a disability under the Convention on the Rights of Persons with Disabilities (CRPD), and rehabilitation is generally recognised as supportive care for disabilities. ADI calls on governments to fully embed rehabilitation for dementia in their policies and to start to report on progress at the annual Conference of State Parties (CoSP).
• Rehabilitation should be embraced as part of ‘precision care’. Recent scientific innovations, such as blood-based biomarkers, have enabled the dementia community to focus more on precision medicine and personalised care. The new dialogue is around ‘precision diagnosis’, ‘precision treatment’, and ‘precision risk reduction’. Now we need to ensure that rehabilitation is more consistently included as part of ‘precision care’ – personalised and focused on the needs of the individual.
• Good rehabilitation is on a continuum. While this report aims to paint a picture of the golden standard of rehabilitation care, there is a whole continuum of good practices that can be tailored to varying resource contexts. While specialised healthcare professionals can – and should – play an important role in supporting people living with dementia with their rehabilitation goals, this report provides many resources that people living with dementia, their doctors, families, friends, and other informal carers can use at little to no cost. This can be implemented when the general health and care workforce, as well as the public, are equipped with dementia rehabilitation literacy.
• We need more implementation research and evaluation. Rehabilitation is an emerging field of practice and, as such, there is a paucity of longitudinal data. What is needed is implementation research that evaluates the benefits of integrating rehabilitation for people with dementia into health systems in different contexts. We need to explore real-world practice – how rehabilitation can fit into a case management model of care that integrates the needs of the whole person, as opposed to a ‘one-off’, task-based model.
• We need to measure economic impact. Improving functionality through rehabilitation should extend independence, enabling people with dementia to remain in work, live at home, stay active in the community, and delay hospital and residential care admissions for as long as possible. Economic impact measurement and cost saving, including for carers is needed alongside further research to substantiate the argument for investment in rehabilitation as a cost-effective measure.
• Quality of life and ageing well don’t have to be a luxury. We need to normalise rehabilitation and encourage governments to invest in healthcare systems that integrate rehabilitation as part of the regular care pathway. Healthcare professionals need to be trained and encouraged to discuss and undertake rehabilitation with dementia patients. Interventions need to be timely to make the greatest impact – we cannot wait until it’s too late.
• Carers should be actively involved in the rehabilitation process. The benefits of rehabilitation are not just felt by the person living with dementia but also their carers, improving their own wellbeing and caregiving experience. Carers should be educated about the importance of rehabilitation, its principles, and the role they can play, and supported throughout the process as essential actors in the dementia journey.

• Nearly one in three wait over a year for a formal dementia diagnosis.
• Waiting times for memory clinics can exceed two years.
•  72% of individuals received no signposting to support while waiting for an appointment with a memory clinic.
• Only 28% of respondents found post-diagnosis support helpful.
•  82% of residential care workers have supported diagnostic processes.
• 70% face barriers accessing professional help for residents.

Recommendations

To help support individuals with dementia, their relatives and friends navigate the dementia care pathway, the report recommends:

Diagnostic Pathway Standards: A national standardised diagnostic pathway must be established and adopted consistently across all regions.

Diagnosis Accountability Framework: The government needs to reintroduce a national dementia diagnosis benchmark, not simply as a target, but as part of a Dementia Accountability Framework.

Waiting Well Support Scheme: A nationally mandated standard of care must be established across every stage of the dementia care pathway – including the pre diagnosis period.

Workforce Education for Care Workers: Provision and funding for national education as a minimum, for care providers to choose tailored workforce education specific to their needs. Dementia Leads in Every GP Surgery: Every GP surgery should appoint a Dementia Lead responsible for:

• Promoting dementia awareness and education amongst practice staff.
• Supporting all those involved with information, planning and signposting to local support services.
• Liaising with specialists, community teams, and voluntary organisations.

1. CQC will co-produce evidence-based statutory guidance for what good dementia care looks like and link to good practice guidance under our assessment framework.
2. CQC will apply the statutory guidance across their regulatory activity.
3. CQC will use their independent voice to tackle inequalities and encourage improvement and innovation.
4. The CQC will be a dementia-friendly and inclusive organisation to benefit our staff and the wider public.
5. CQC staff will receive comprehensive dementia training and work with partners to influence training and competency for the health and social care workforce.
6. CQC will actively work in partnership with key stakeholders to collectively affect real change.

Work will be focused on the following areas:

Developing statutory guidance and defining good practice

CQC will work towards achieving objective 1 to develop statutory guidance. CQC will:

• involve people with lived experience, carers and a wide range of other stakeholders in co-production, ensuring the guidance is led by the voice and experiences of people who use services
• carry out research into the characteristics of effective dementia care, including learning from other countries and regulators, as well as further information gathering to develop a robust evidence base on which to build the statutory guidance principles.

Learning and development needs of CQC’s workforce

To ensure they are effective in our regulation of services for people with dementia, CQC will ensure that they understand and respond to the learning needs of their own staff in this area. This includes carrying out a learning needs analysis, defining learning objectives and developing training and guidance for CQC staff aligned to the statutory guidance we publish. 

Engagement and communication

CQC will apply a wide range of tools and approaches to involve people, carers, key stakeholders and CQC staff in the development of this work. They will continue to work collaboratively with other key stakeholders and policymakers on joint improvement ambitions and actions that enable good dementia care, in areas like workforce, system pathways and technology. They will share updates on our work with the public, providers and other partners and share future opportunities to get involved.

• Currently, NHS England reports that 64.8% of people aged 65 and over in England with dementia are formally diagnosed, slightly below the 66.7% target. In Scotland, Wales, and Northern Ireland, estimated diagnosis rates are 64%, 53.9%, and 62%, respectively.
• Dementia diagnosis can happen for people while they are in care homes, likely at a more advanced stage of dementia. While still valuable, at this stage there is less opportunity for intervention and improving the course of the disease after diagnosis.
• For older adults, prevention and treatment should aim to delay the onset of severe symptoms, compressing their period of ill health to later in life. This approach would reduce the time during which they require intensive care, improving their quality of life.
• For some people with dementia, available treatments can delay the progression of symptoms and the need for nursing home care. These treatments not only enhance quality of life and independence but also offer potential cost savings by delaying the expensive, intensive care required for the more severe stages of dementia.
• To achieve these benefits, early and accurate diagnosis is crucial. Modelling suggests savings of £8,800 to £44,900 per person where nursing home admissions can be delayed through effective management and treatment of Alzheimer’s disease.
• There may be other benefits including decreased need for unpaid care and healthcare services which are difficult to quantify with the current level of evidence. The modelling also does not include the effect of other effective interventions such as memantine and cognitive stimulation therapy. Potential savings could therefore be higher than those modelled.
• This modelling relies on the critical assumption that treatment does not impact the survival time. Although there are other benefits, the cost savings do not occur if people live longer and therefore require an overall longer period of care.
• More long-term studies and real-world evidence are needed to fully understand the impact of available treatments. This research is essential to improve outcomes for those affected by dementia and realise the potential benefits of early diagnosis and intervention.

• People with dementia account for over 36 million contacts annually across community, primary and mental health care.
• People with dementia attend A&E almost a million times a year.
• People with dementia account for almost one in six patients in hospital at any given time.
• Undiagnosed people with dementia attend A&E, on average, 1.5 times per year, which is more than people with a diagnosis for mild, moderate and severe cohorts; and three times as much as people without dementia.
• People with dementia visit the GP up to three times more each year than someone without dementia and by 2040, there will 6.9million additional primary care contacts associated with dementia, requiring an estimated 1.7 million more hours of primary care time.

• 80% of the general public think dementia is a normal part of ageing, a dramatic increase compared to 66% in 2019.
• 65% of health and care professionals believe dementia is a normal part of ageing, up from 62% in 2019.
• Over a quarter of people globally believe there is nothing we can do to prevent dementia, with an increase from 2019 to 37% in lower-middle income countries.
• There are also varying degrees of understanding around causal attributions of dementia; with a dramatic increase of people in high-income countries believing that lack of family support can cause dementia and over a quarter believing there is nothing we can do to prevent dementia.
• There was a general increase in the view that people living with dementia are dangerous and unpredictable in their behaviour, as well as an increased perception that it is important to remove family responsibilities from people with dementia to avoid stressing them.
• More than 27% of respondents from the general public expressed a belief that moving a family member with dementia to a care home, even against their wishes, would be for the best
• 88% of people living with dementia indicate experiencing discrimination, up from 83% in 2019.
• 36% of the general public in lower-middle income countries are willing to keep their dementia a secret, a significant increase from 19% in 2019.
• Carers and people living with dementia tended to report higher levels of loneliness than the general population.

Report recommendations

• Memory Assessment Services should ensure provision and consistent recording of high-quality memory assessment, including brief assessment of: eyesight and hearing, alcohol consumption and falls. They should offer post-diagnostic follow up and support through provision or facilitated access to a dementia advisor, Cognitive Stimulation Therapy, carer psychoeducation courses, and medication review as required.
• Trusts should ensure monitoring at an appropriate senior level of the recommendations set out in the Dementia Care Pathway Implementation Guidance and work together within regions, involving people with lived experience and their carers, to identify barriers to access, including demographic factors and deprivation.
• Integrated Care Boards should review results of their services with reference to responsibilities to meet the recommendations set out in the Dementia Care Pathway Implementation Guidance, including:
  • Commissioning to meet current and anticipated need.
  • Recommended waiting times in line with the Guidance.
  • Criteria to ensure equitable access to services.
  • Diagnostic criteria and components of routine in-clinic assessment, as set out in the Guidance.
  • Equitable access to post diagnostic support, including standard provision of Cognitive Stimulation Therapy to people diagnosed as living with mild to moderate dementia.
  • NHS England/ Dementia Evidence Toolkit.
• NHS England, at national and regional levels, should support Integrated Care Boards and Trusts to work jointly to address variations highlighted by the audit data in access to and provision within memory assessment services, with the expectation that in all parts of the country people using services receive equitable provision, including:
  • appropriate referral and assessment, including appropriate use of neuroimaging,
  • timely diagnosis within recommended timeframes,
  • access to evidence-based treatment (e.g. Cognitive Stimulation Therapy),
  • post-diagnostic support and follow up,
  • as recommended in the NICE guideline. This work should be informed by the Dementia Care Pathway Implementation Guidance and the Memory Services National Accreditation Programme Standards for Accreditation.

• 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).
• 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.

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.

Further reading on the hub:

This year’s World Patient Safety Day on 17 September 2024 (WPSD 2024) is focused on the theme “Improving diagnosis for patient safety”. Find out more.

Key findings

• The largest cost associated with dementia is the cost of unpaid care, which accounts for 50% of the total in 2024.
• Unpaid care costs increase with severity as patients start to require more support and caregiver surveillance, growing from £9,700 a year for people with mild dementia to £32,300 a year for people with severe dementia. These costs are exclusively borne by patients and their carers.
• Social care costs are driven largely by residential care - an additional 76,000 people are projected to be living in a residential home and 30,000 in a nursing home in 2040 compared to today. The number of people receiving domiciliary care is expected to increase by 43%, with many people with moderate dementia requiring care.
• Healthcare costs make up 14% of total dementia costs, with almost half (£3.5billion) attributed to secondary care. Diagnostic imaging, including MRI, CT, PET and neuropsychology tests, currently only makes up a very small fraction of total healthcare cost at 1.1%

Recommendations

The report suggests a pressing need to influence policy and drive change across five areas:

1. Improve early and accurate diagnosis - less than 65% of people with dementia are diagnosed, most without confirmatory testing.

• Improve screening to identify more cases earlier.
• Increase the use of imaging and cerebrospinal tests for confirmation.
• Enable earlier action by families and readiness for available treatments.

2. Adopt existing and emerging therapies - it is estimated less than 6% of dementia patients are on NICE-approved medications.

• Support patients and families to make lifestyle modifications.
• Ensure full uptake of NICE approved medicines – today and in future.

3. Support unpaid care - by 2040, over half a million people will need unpaid care, with 70% of carers seeking more support.

• Increase funding for respite, support and carer training.
• Adopt a strategic focus in local areas to proactively identify and support carers.

4. Improve social care - social care is of variable quality and can be a financial burden on self funders.

• Focus on enabling and providing high quality domiciliary care.
• Ensure adequate funding and workforce now and in the future to meet unmet need.
• Enable collaborative working across health and care organisations.

5. Improve dementia data capture - there are significant gaps in critical data collections, including records of social and unpaid care provided.

• Improve data capture of disease progression and care provision – including informal care.
• Create cohort datasets to measure the impact of new treatments and initiatives.

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.

1. Develop a cross-governmental strategy for the prevention of ill health to address the health and lifestyle factors that affect our brain health, reducing dementia risk whilst also improving the health and wellbeing of the population.
2. Invest in the current diagnostic pathway to make it fit for purpose, ensuring it has the resources it needs to meet growing demands, identifying people who could benefit from new treatments or participate in dementia research in a timely way.
3. Include savings in informal care and carers’ quality of life when NICE evaluate the cost-effectiveness of new dementia treatments, making sure viable treatments are available on the NHS as soon as reasonably possible.
4. Establish the UK as a world leader in dementia research, capitalising on initiatives such as the dementia mission and increasing opportunities for people to participate in research across the country.

• how to reach people with dementia and carers who need support and care
• how to understand people’s needs and wishes in the light of different values and traditions
• how to establish trust
• how to tackle racism and discrimination (especially within the healthcare system)
• how to provide person-centred care
• how to overcome barriers linked to language and education
• how to adapt care and support to religious beliefs and cultural traditions.

There are no neat, readymade answers to these questions because every situation is different and involves different people, at different moments in time, looking for solutions within different social and healthcare systems. However, it is possible to develop an approach to working with and supporting people from all ethnic groups to gradually increase your ability to provide good quality intercultural care and support.

• in England, diagnosis rates have dropped by approximately five percentage points and stagnated between 61 and 63%.
• in Northern Ireland, the number of people on the dementia register has dropped by around 10%, meaning that diagnosis rates are approximately 60%.
• in Wales, the dementia diagnosis rate has dropped to approximately 50% following the pandemic.

It notes that post-pandemic, there has been a lack of clarity around the causes of the ongoing stagnation in dementia diagnosis rates and the barriers that health and care systems face in delivering a timely, accurate diagnosis of dementia. Seeking to address this issue, the findings of this report were informed by a series of roundtable events intended to gain consensus on what these barriers are. Attendees at each roundtable included people affected by dementia, representatives from NHS trusts, commissioners, clinicians and academics.

Based on its findings, the report makes a series of recommendations, grouped around four key themes, to improve diagnosis:

Workforce and new ways of working

• 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.

Health inequalities and public health messaging

• 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.

Financial and system pressures

• 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.

Future-proofing the diagnostic system

• 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.