Preparing for new disease modifying therapies for Alzheimer’s Disease 

Dementia is an emerging clinical priority for UCLPartners and, as a Health Innovation Network, our role is to put ourselves into these uncertain spaces, and bring together stakeholders to innovate, implement and measure new approaches.  

‘’The point of a research translation and innovation organisation is to put itself in those uncertain spaces and start to piece together ahead of time what might be some of the emerging evidence and practice and some of the gaps on which we can productively focus’’

John Craig, Chief Implementation Officer, UCLPartners 

At a recent webinar chaired by UCLPartners’ Chief Implementation Officer, John Craig, we discussed with front line clinicians, commissioners and academics from Queen Mary’s University (QMUL), NICE and Alzheimer’s Society colleagues, how to best ensure that the arrival of new therapies can be beneficial to the population we serve. The webinar unveiled exciting opportunities but also knotty issues that will need to be worked through in order for DMTs to reach the right people whilst not disadvantaging patients who aren’t eligible for this treatment. This is a summary of key takeaways from the conversation, the full recording of the webinar is available here. 

We began the webinar by asking attendees to let us know how they were feeling about the possibility of new DMTs for Alzheimer’s Disease. The result brought into focus the excitement felt by individuals, but also a good dose of apprehension and uncertainty within the system, given the widespread change that will be necessary. 

”As a clinician there is a sense, a fear of change which I have myself, but also …how wonderful to be part of a story where dementia becomes modifiable”

Professor Ruth Dobson, Professor of Clinical Neurology and Consultant Neurologist, QMUL

Preparing for new therapies  

To set the scene and to highlight the urgent need for this debate, Jade Stacey, NICE, outlined the process involved for evaluating new therapies for use within the NHS. Something that was not widely known was that, unless an exception is made by NHS England, once a new therapy is approved, services have just 90 days in which to make these available to eligible patients. Preparing for new therapies will affect all parts of the pathway, necessarily bringing forward diagnosis but also changing ongoing care for all patients, not only those eligible for new therapies.  

Professor Ruth Dobson reflected on the introduction of DMTs for patients with Multiple Sclerosis (MS) in the 1990s and applied the experience to what is now unfolding in the world of dementia care. As with MS, people may end up being diagnosed who previously would not have been, “so the pool goes up and up” (Professor Ruth Dobson, Professor of Clinical Neurology and Consultant Neurologist, QMUL) and with a disparity of 20% between Integrated Care Systems (ICSs) with the highest and lowest dementia diagnosis rates, the increase of eligible patients may be particularly stark in some regions. In MS, the number of patients being diagnosed is still increasing decades after the introduction of DMTs for people with MS. It will be important to consider the impact this will have on already stretched services.  

Ensuring equitable access 

Early diagnosis will be a positive benefit for most of those suffering with dementia, “it does help with crisis avoidance, family, carers… the way we can support them is through a diagnosis that is accurate and timely” Alison Clowes, Manager, Alzheimer’s Society. With the arrival of new DMTs, diagnosing eligible patients earlier increases the chance of protecting them against further loss of brain function. 

However, we also need to keep in mind the risk of widening inequalities. Learning from MS services, it would be a mistake to not initially think about the wrap around costs to ensure the NHS can deliver new drugs equitably. Concerns were raised that the introduction of new therapies may lead to already stretched resources being redirected from elsewhere. 

“We don’t think about the wrap around costs of delivering DMTs…and we need to ensure that services can safely deliver them to everyone in an equitable manner, not just to those able to navigate healthcare.”

Professor Ruth Dobson, Professor of Clinical Neurology and Consultant Neurologist, QMUL 

Most people with dementia have other illnesses to manage as well. Integrating services across health and social care to join up thinking and care will be hugely important for patients, their families and carers. At least to begin with, a very small proportion of those living with dementia are likely to be suitable for DMTs. Similarly to MS treatments, it is of utmost importance to consider which patients are not suitable – who should deliver these restrictions? Who is the gate keeper? And what does the care pathway for this majority look like? 

Ensuring a balance between enabling uptake of new therapies and providing high quality care for all other patients will need to be a prioritised. 

Collaborating and ensuring intelligent planning 

So how can we ensure that services keep what clients value most and address the enormous variability within the system? QMUL have a new NIHR Dementia and Neurodegeneration Policy Research unit (DeNPRU) will look at  how the structures and processes which are set up within Dementia care translate into outcomes, –“the care that we give is more than a delivery pathway – understanding what aspects of current care are most valued by clients will be key to successful reconfiguration” Professor Claudia Cooper, Professor of Psychological Medicine and Consultant Old Age Psychiatrist, QMUL said. The first step of this process will be through survey co-design workshops. 

John asked speakers how the NHS dementia community could begin to collaborate and prepare for new DMTs intelligently. Their responses were cautious but positive, with the message to ‘engage’ and to avoid services reinventing the wheel. 

• Engage in surveys co-design workshops with QMUL to ensure ‘careful gatekeeping’ and that those who are not suitable for DMTs receive the best care and support possible  (contact denpru@qmul.ac.uk). 
• Engage in the process of technology appraisal through NICE
• Engage with other services. Keep talking and learn from others so that no one is reinventing the wheel. 

”It feels like we could easily go from paralysed by uncertainty to being completely overtaken by demand.”

John Craig, UCLPartners 

The new DMTs for Alzheimer disease feel closer than ever. UCLPartners aims to support our systems to move forward with these changes by unpicking how we can best support our partners. Please contact alexandra.hellyer@uclpartners.com if you would like to receive more information about UCLPartners’ work in dementia. 

You can watch the full webinar here 

Thank you to all our speakers and those who attended and engaged in discussions during the webinar.