With the anticipated introduction of new disease modifying therapies (DMTs) for Alzheimer’s disease, this moment in time marks an opportunity to reflect and make improvements in the diagnosis, treatment, and care of people with dementia. While a sizeable proportion of patients attending memory clinics may be referred for triaging for DMTs for Alzheimer’s, only a minority are likely to be suitable for these. For those who are eligible, considerable changes need to happen within existing models of care to enable these patients to be identified and their treatment appropriately managed, as well as ensure that those not eligible receive the best care and support possible.
This is an exciting time for dementia research and care. By harnessing the potential of new therapies and diagnostic tools, we can significantly improve the quality of life for those affected by dementia. As a health innovation network, we are committed to leading this change, facilitating collaboration, and ensuring that as many people as possible benefit from these advancements.
We hosted a roundtable bringing together stakeholders from across our geography including system leaders, memory clinic specialists, academics, clinicians, those with lived experience and their carers, charities, those working in primary care and commissioners to explore how these new therapies may affect clinical pathways and the potential opportunities to improve dementia care for all.
What did we learn from our engagement?
Invest in diagnosis
The new DMTs on the horizon have been tested in people with very early-stage Alzheimer’s disease. Currently, in England, we don’t tend to diagnose a person with the disease until they are at a more advanced stage. However, it is thought that physical changes within the brain of people with Alzheimer’s can be detected up to 20 years before a person notices significant cognitive changes. That means we can and need to be better at identifying people before their disease progresses.
A promising development discussed at the roundtable was the potential of blood biomarker testing for faster and more accurate diagnosis. Professor Jonathan Schott, UCL, spoke about the Alzheimer’s Disease Diagnosis and Plasma p-tau217 (ADAPT) trial. This aims to validate these tests in real-world settings, potentially revolutionising diagnostic practices and making them more accessible and cost-effective. In research settings, these tests have been shown to identify around 80% of patients with Alzheimer’s disease and could be made widely available. Current diagnostic tools, such as lumbar punctures and amyloid positron emission tomography (PET) scans are either invasive or expensive and, as such, are available to just 1-2% of patients undergoing diagnosis.
This is a challenging, but also very exciting time in dementia, with new blood tests and hopefully new treatments soon coming on stream. Now, more than ever, we need to look at our systems and how best to harness these opportunities as a community. UCLPartners is uniquely placed to bring together a very diverse group of specialists involved in dementia care, and to help shape the services that will be needed to ensure that patients can all benefit from these advances no matter where they live, and who they see.
Professor Jonathan Schott, Professor of Neurology at the Dementia Research Centre, UCL Institute of Neurology
Address inequalities in dementia care
A central theme of the discussions was addressing inequalities in dementia care. There are concerns that inequalities will be increased as weaknesses within the healthcare system are magnified by these new pressures that come with new diagnostics and treatment pathways.
Those from poorer or ethnic minority communities are more likely to present later with symptoms of dementia and therefore work to improve diagnosis rates will need to incorporate education for healthcare staff to identify symptoms early as well as build trust, enduring relationships, and effective communication with these communities.
There is also a need to be mindful of the fact dementia assessment tools aren’t always culturally appropriate and can falsely flag someone as having a type of dementia when they do not. For example, being asked to draw a house as part of a diagnostic test can be interpreted differently across people from different cultures.
It is particularly difficult to get care in the ethnic minorities. I would like to see better care that is culturally appropriate.
Dr Nazia Hussain, lived experience of dementia
How do we build relationships that are enduring and involve trust with minoritised and marginalised communities?
Dr Moïse Roche, Senior Research Fellow, UCL
Support people who aren’t eligible for new treatments
Although DMTs are potentially the start of huge changes in the care of people with dementia, we know only a minority stand to be eligible to receive these. Supporting those not eligible, as well as not losing sight of the continued care for those receiving the new therapies as their disease progresses, was a focus of the day.
Current NICE guidance is not always routinely met, with variability seen in post-diagnostic support between regions and different types of dementia. Updating this guidance to include more specifics around dementia diagnosis and information for people with mild cognitive impairment is needed.
Within our geography of North Central and North East London and Mid and South Essex, it was felt that there is a real need for accessible and culturally appropriate care, through upskilling and increasing the workforce. What is more, there is a need to reframe the conversation, speaking more about brain health and resilience, focussing on how we can best support people to live healthier lives using knowledge we already have to improve quality of life and brain health.
We need shift the frame to focus more on brain health and improving resilience, rather than just talking about dementia, which is the end stage of a long and partly preventable process.
Dr Catherine Mummery, Consultant Neurologist, National Hospital of Neurology and Neurosurgery
There have been disease modifying therapies for about 20 years in MS and they’ve really changed the face of living with the disease. Hopefully, we can learn from our experience about how to set up services, how to deliver these and how to change people’s lives as we move forward into disease modifying therapies for dementia.
Professor Ruth Dobson, Consultant Neurologist, QMUL
What’s next?
In line with our learnings from the roundtable, we will focus on the following critical problem areas in our work going forward:
- Identification of patients with possible dementia
- Improving dementia screening tools
- Patient triage throughout the dementia care pathway
- Post-diagnostic care
- Ensuring multidisciplinary team collaboration in dementia diagnosis.
We will be progressing solutions and innovations across these areas over the coming months in partnership with our health system partners and industry leaders.
I’m really excited to work together with UCLPartners and different stakeholders to really look at the different challenges and opportunities that these new treatments bring.
Professor Rimona Weil, Consultant Neurologist, UCL
Thank you to all of those who attended the roundtable event and helped shape our work. A particular thank you to our chairs, speakers, and panel members; Professor Ruth Dobson, Professor Rimona Weil, Dr Catherine Mummery, Professor Jonathan Schott, Dr Nazia Hussein, Dr Reshad Malik, and Dr Moϊse Roche.