Mark MacDonald
Associate Director for Advocacy & System Change at Alzheimer’s SocietyMark MacDonald writes for Chamber on how making dementia a priority will help to mend the health and social care system.
Dementia’s impact on the healthcare system, on the economy and – most importantly – on the lives of those it affects, is enormous. We know now that dementia is our biggest killer, devastating lives and applying huge and existential pressure to the system.
For too long though, it has been neglected by policymakers, surely contributing to dementia having a particularly heavy impact in the UK compared to other countries. With better understanding and greater prioritisation, hope is possible. But that will require us to work together, challenge ourselves to do better and accept that addressing the big issues in health and social care means addressing the big challenges in dementia.
Underinvestment
For decades, dementia has suffered from a lack of attention and investment. It’s been seen as too complex, too expensive, and too hopeless. For many, it’s viewed as simply a natural part of ageing rather than the devastating, terminal disease it is.
But approached differently, dementia is the lens through which our health and social care system can be viewed and repaired. Indeed, many of the major challenges facing the system – prevention, diagnosis, access to treatments, participation in research, the bottleneck between the NHS and social care – mirror those seen in dementia: fix dementia and you can fix the system.
In the last 12 months, the first drugs that can slow Alzheimer’s disease have hit headlines across the globe and led to real hope, reinforcing the power of investment in research.
The advent of these exciting new treatments could and should be the catalyst for the change we so desperately need to see. The implications for what might be possible for dementia in the years ahead should kick-start the whole system into action.
Capitalising on new treatments and improving the lives of those affected by dementia starts with diagnosis.
Diagnosis
A sharp focus on diagnosis is key to unlocking care and support for people living with dementia and unlocking innovation and improvement. However, the current situation in dementia diagnosis is unacceptable given dementia’s status as our biggest killer. Today, nearly 4 in 10 people with dementia do not get a diagnosis. The national target for diagnosis is that 66.7 per cent of people with dementia are diagnosed. In the UK, we accept, at an official level, that a third of people with dementia are left to cope alone and do not get the care and support that come hand-in-hand with a diagnosis.
In other major killer diseases, better diagnosis has been a major priority for years and remains one of the main tools to drive improvement in outcomes. In cancer, for example, there is a 28-day target for diagnosis and decision-makers are held accountable if that target is missed. In dementia, should they be fortunate enough to receive a diagnosis, there are reports of people waiting months or even years for it. During this wait, they are often deprived of vital care, support, and access to participation in research trials seeking further breakthroughs.
The new drugs, which may soon be available for some patients diagnosed with Alzheimer’s disease, are most effective when given early. When early and accurate diagnosis is not provided, this closes off routes to support potentially life-changing treatments both now and in the future.
To transform the dementia landscape, and unlock the potential to transform lives, we need to do better, and the opportunities are there for the taking.
New, faster, more accurate ways of diagnosing – including blood tests – are coming. By working together, including at a local level to demonstrate the effectiveness of new diagnostic technologies, and by continuing to improve the data we collect around dementia diagnosis, radical improvements can be made.
Without a timely and accurate diagnosis, people are left without answers or the interventions that could prevent crises further down the line.
People affected by dementia are the biggest users of social care. Yet because of the crisis in social care – the too-small and too-undervalued workforce, the lack of reform on cost, and the lack of availability – we know the pressure applied to the NHS through unplanned hospital admissions of people with dementia is enormous. The reform on the scale needed still feels distant but policymakers would do well to apply the lens of dementia to this challenge too.
What does the future hold?
A raft of new reports has highlighted the scale of the challenge presented by dementia. The impact on systems, as well as on individuals and families, is staggering. The cost to our economy of tolerating this runs to many tens of billions annually. Yet investment and prioritisation lag behind other big killer diseases. That must surely change.
We cannot continue to accept the current situation, not least because almost all of us have in some way witnessed the devastation, pain, and cost dementia brings to bear.
This isn’t easy. Dementia is a complex suite of brain diseases whose impact straddles the entire system. But the imperative for change is real and practical, and our sense at Alzheimer’s Society is that the tide is beginning to turn on dementia starting to be recognised as the system-level threat it is.
Take action
Alzheimer’s Society funds world-class research – including the research that laid the foundations for the discovery of these new treatments. We are working with partners on a project to get blood tests for Alzheimer’s disease into the NHS. We are the only UK dementia charity funding research and delivering services to people living with the condition every day, whilst also advocating for the major policy changes that hold the key to transforming the prospects of those affected by dementia. We understand dementia from the perspective of those most affected and view dementia as the whole system challenge it is. People we speak to aren’t just concerned about diagnosis or social care or new treatments as individual issues: they deeply want and need improvement across the whole system.
We need to be more ambitious, more determined, and more compassionate – people affected by dementia deserve better.
Strong, national plans need to be put in place, reinforced by ambitious, accountable local strategies. Investment is needed in diagnosis and research to unlock the support and breakthroughs future generations are relying on. And of course, fundamental reform of social care finally needs to be delivered. Perhaps most importantly, bold leadership is required to drive dementia up the priorities list, so it finally reflects the scale and urgency of the challenge we all face.
We’re ready to work with you. We urge governments and policymakers across the UK to stand alongside us and make dementia the priority it so clearly needs to be.
Contact us: change@alzheimers.org.uk
