Increasing access to a dementia diagnosis

Published May 2024

Each report seeks to increase the number of people living with dementia with a diagnosis by:

1. making dementia a priority (Module 1)
2. working with the All Party Parliamentary Group for dementia
3. reducing regional variation in diagnosis
4. supporting those from an ethnic minority community to access a diagnosis
5. increasing diagnosis for people residing in a care home or hospital setting

The reports set out a roadmap in how to achieve this change. But a diagnosis is not done in isolation. It requires all health and social care professionals involved in dementia care to recognise the symptoms of dementia and to initiate the process to diagnosis, which itself facilitates access to vital care and support that enables people to live well with the condition.

The recommendations set out in these reports, targeted at Integrated Care Systems, will address the current barriers to diagnosis. 

What are the key findings and recommendations from the reports?

The Economic Impact of Dementia: 
Module 1

Alzheimer's Society commissioned Carnall Farrar to develop a report setting out estimates of the current and future economic and healthcare costs of dementia in the UK. The first module shows the huge impact that dementia has on our health and social care system and how this will grow significantly in the future.

• The cost of dementia in the UK is estimated to be £42 billion in 2024, rising to £90 billion by 2040. 
• The total costs are made up of healthcare costs, social costs, costs of unpaid care as well as quality of life costs. 
• The costs of dementia rise significantly as the condition progresses. The annual, per person cost for mild dementia is £28,700 compared to £80,500 for severe dementia, driven by increasing need for more complex social and unpaid care.  
• An unacceptable amount of financial burden – 63% of the total costs of dementia - is borne by patients and their families. This is the highest overall percentage share of the costs of dementia.  
• Despite strong evidence about the benefits of dementia diagnosis, spending on dementia diagnosis and treatment is equivalent to just 1.4% of the total dementia healthcare spend.
• Unpaid care costs make up the largest portion of costs associated with dementia, accounting for 50% of total costs in 2024.
• Nearly 50% of people fully fund their social care, with social care being the highest per person cost across all settings. Steps must be taken to reduce social care costs to improve quality of life and aid effective cost management. 

Raising the Barriers: An Action Plan to Tackle Regional Variation in Dementia Diagnosis in England

There is significant variation in how quickly and accurately people are being diagnosed with dementia based on where they live in the country. There is a difference of over twenty percentage points in the dementia diagnosis rates between the highest and lowest performing Integrated Care Systems (ICSs) in England at present.

The report by APPG on Dementia recommends:

• Each ICS must develop a comprehensive dementia strategy
• All dementia diagnoses must include an accurate subtype
• NHS England must continue to review and develop its methods for calculating dementia prevalence and diagnosis rates
• A national Dementia Observatory should be created to collate and publish existing data collected across system levels
• Government intelligence about variation in dementia diagnosis rates must be translated into action
• A broader range of regional and local communication channels must be used to reach those who may be lost to the system
• Government should ensure the primary care workforce is adequately planned and resourced to enable dementia diagnosis
• High-quality post-diagnostic support services for dementia must be available more equitably across England

Regional variation: Increasing access to a dementia diagnosis

Our research finds that diagnosis rates are influenced by regional factors and impacted by the processes at each step of the diagnostic pathway.  

• Increase dementia case-finding and improve identification processes to mitigate instances of people reluctant to seek help for dementia symptoms. 
• Improve and streamline referral pathways to shorten the diagnostic process and ensure people access a diagnosis in a more seamless way. 
• Enable primary care to undertake more diagnoses to ensure that local areas keep up with demand.  
• Diagnose mild cognitive impairment and monitor cases to ensure that those people with the condition who go on to develop dementia are diagnosed in a timely way. 
• Review access to services to ensure people with dementia in rural communities are not impacted in accessing a diagnosis. 
• Improve the quality of dementia coding and reporting to ensure all cases of dementia are reported.
• Encourage partnership working across all services and professionals involved in diagnosis to understand where issues exist in pathways and implement measures to improve them. 

Ethnic minority communities: Increasing access to a dementia diagnosis  

Our research finds that people from ethnic minority communities experience an inequity of diagnosis, either receiving one late or not at all. Both community and service barriers contribute to this inequity. 

• Provide community link workers and include organisations representing ethnic minority communities in the planning of services to reduce community barriers to diagnosis.
• Improve identification and referral processes to improve access to a diagnosis in a more timely and equitable way.  
• Make services more culturally appropriate to mitigate instances of people delaying help seeking for dementia symptoms. 
• Improve access to, and quality of, interpretation services and ensure services can access validated assessment tools to facilitate a more quality diagnosis.
• Encourage better demographic data collection to enable commissioners and services to plan and deliver services more appropriate for their populations.  

Hospitals and care homes: Increasing access to a dementia diagnosis

Our research finds that identifying, assessing and diagnosing dementia in both a hospital and care home setting is challenging.

• Implement dementia and delirium pathways to mitigate impact of delirium on dementia identification and assessment. 
• Prioritise dementia identification upon admission to ensure more cases of possible dementia are assessed. 
• Provide dedicated dementia teams and implement mandatory training to improve identification of dementia. 
• Enable better sharing of patient information between care settings to support a more effective assessment of dementia. 
• Ensure discharge planning processes are not inhibited by dementia assessment to ensure more people with dementia are appropriately assessed. 
• Audit referral rates and provide hospital link workers to memory services to reduce instances of missed referrals to memory assessment post-discharge.  
• Improve care home staff skill and confidence through training and improving processes to increase identification to ensure that more people with possible dementia are identified. 
• Ensure care homes can access clinical teams to facilitate a more appropriate assessment of dementia. 
• Increase access to assessment tools and information to improve diagnosing clinicians’ confidence and ability to diagnose dementia. 
• Provide and monitor multidisciplinary teams through the Enhanced Health in Care Homes model to reduce systematic barriers to diagnosis.”