At present there is a difference of more than 20 percentage points in the dementia diagnosis rates between the highest and lowest-performing integrated care systems (ICSs) in England. Below is the foreword to the report of an inquiry that examined how the most deprived and rural communities are particularly adversely affected by this regional disparity. The inquiry’s findings show a complex picture in which issues ranging from variation in population health risk and dementia public health understanding, to the geographical spread of brain scans and transport networks all play a part in regional dementia-related health disparities. The report sets out a number of recommendations so that all who need it can receive a timely and accurate dementia diagnosis.
Dementia diagnosis is the key which unlocks vital care and support for people living with dementia, particularly those who are struggling to manage their symptoms alone. It helps
people to understand their condition, and it allows them and their loved ones to start planning for the future.
The All-Party Parliamentary Group on Dementia is acutely aware of the importance of a dementia diagnosis, but we also know that the diagnosis rate in England dropped from 67.6% to 61% during the Covid-19 pandemic. It has not recovered, sitting at around 63.8% today.
Although the national picture is poor, when we dig further into the data, we can see that there is huge regional variation in dementia diagnosis rates. In Stoke-on-Trent, for example, the rate is more than 80%, while in South Hams in Devon it is just over 40%.
Where you live has a massive impact on whether you will get a timely, accurate and high-quality dementia diagnosis. We are united in our view that a postcode lottery for a condition which will affect 1 in 3 of us is not acceptable. However, during this inquiry, we have been struck by the number of examples of good practice going on in pockets all over the country.
Good work is being done and it needs to be scaled up and shared across the NHS – this is the central recommendation of this report. We see this as a key part of the Government’s
Levelling Up agenda. Health outcomes should not be so disparate between local authorities, and urgent work needs to be done to ensure equitable access to dementia diagnosis.
We have heard a great many powerful, thoughtful and insightful submissions from people right across the dementia sector as part of this inquiry. In particular, we want to thank the 2,300 people who filled out our online survey and shared their story to inform this work. These were all people who either had dementia or had been closely involved with the diagnosis journey of a loved one.
Sadly, just 5% of the 1,400 direct stories were positive. That underlines for us the importance of improving the dementia diagnosis pathway and making it work better for people living with dementia and their loved ones. The words of people affected by dementia are woven through this report, and they serve as an important reminder that behind the figures and statistics are real people going through extremely trying circumstances. As a Group we have kept this front of mind in our work.
This is the first inquiry report we have worked on together as co-chairs and it has been a great pleasure to do so. Together, we thank everyonewho has helped shape this inquiry and we look forward to taking our recommendations forward so everyone living with dementia can access a timely, accurate and high-quality dementia diagnosis regardless of where they live.
Debbie Abrahams MP and Baroness Angela Browning, co-chairs, APPG on Dementia