This week, Office for National Statistics figures (1) revealed that dementia has overtaken heart disease as the biggest cause of death in England and Wales, accounting for 11.6% of all deaths. The simplest reading of this figure is that dementia is increasing and we are not dealing with it. However, this seemingly simple claim is much more complicated than it appears. So what is the story behind the headlines? And what does this mean for people with dementia and for healthcare more broadly?
Beginning with the simplest question, is dementia on the rise? The short answer is yes. However, there is some speculation that despite rising numbers overall, cases of dementia as a proportion of the entire population may actually be decreasing, potentially due to improvements in education and health behaviours (2). Yet the picture is more complicated still. Unsurprisingly, being healthier (exercise, diet, etc.) decreases your risk of getting dementia, but being healthier increases your likelihood of growing older and growing older increases your risk of getting dementia. For these reasons, dementia is somewhat paradoxical; improving health behaviours probably fuel and combat dementia simultaneously. Dementia may be in decline proportionally, but so many of us are surviving for so much longer that this decline is overtaken by increases in absolute terms. Therefore, whether these latest ONS figures warn of a health disaster or highlight unprecedented progress within health is a matter of perspective.
Beyond prevalence, the political processes behind the statistics are even more complex. Although ‘dementia’ as a diagnosis has been around since Plato (3), this week’s developments actually mark a significant moment in a much shorter history, which only began in the 1970s. Throughout most of human history, dementia has been an accepted part of old age, and only cause for medical concern when occurring in those aged under 60, which is relatively rare. In 1974, Dr Robert Katzman challenged this assumption. Focussing on Alzheimer’s disease, the largest cause of dementia, he claimed that it was an illness regardless of age. This had significant ramifications, because extending the disease category to people aged over 60 instantly lifted Alzheimer’s disease from obscurity to being the 4th or 5th biggest killer in the US. At the same time, the fledging National Institute on Aging was searching for a cause to substantiate its status within a sceptical National Institute of Health and needed a secure funding source. The newly expanded Alzheimer’s disease was the ideal candidate, and with NIA promotion, it rapidly became a household name (4). Official recognition of “dementia and Alzheimer’s disease” as the leading cause of death in England and Wales can therefore be viewed as the latest development in a remarkable political rise.
You may notice that the ONS figures refer to “dementia and Alzheimer’s disease” as a single category, and this also requires some deconstruction. Dementia is not a disease, it is a syndrome, a set of symptoms that can be caused by one (or a mixture) of many different conditions (5). Yet dementia is represented as one category in the statistics. Interestingly, different cancers are represented individually in the figures, and if represented as a single category would account for more than twice the number of deaths attributed to dementia (6). This highlights another reason behind dementia’s rise to the top spot: the dementia category includes many more conditions than other categories. Additionally, in 2011 the coding system behind official causes of death was modified (7), further swelling the scope of the dementia category. Therefore, the figures are partly attributable to the quirks of the official categorisation of conditions.
The same modifications to the coding system have also been important in making dementia a valid cause of death, rather than something people die with. This is a vital consideration because the assertion that dementia can kill you is not as unambiguous as recent headlines suggest. Some physicians are uncomfortable with citing dementia as an actual cause of death. As a set of symptoms it can certainly lead to concerning death defying behaviours; wandering down dimly lit dangerous roads is not an uncommon phenomenon. Yet people with dementia are much more likely to die due to an infection or heart failure (8). These issues are often bound up with their dementia, but does this necessarily mean that dementia is the cause of death? Furthermore, many people with dementia will simply slip away without a distinct cause, in what many might deem dying of old age. Considering this, one of the stories behind the headlines may be that doctors are more readily recording dementia as a cause of death. The degree to which this is indicative of a changing medical culture around ageing is up for debate.
Another important consideration is the recent focus on diagnosis, including the contentious, and ultimately short-lived, policy of paying GPs £55 per dementia diagnosis back in 2014 (9). Debates over the merits of increasing the diagnosis of dementia are beyond the scope of this piece, but what is certain is that diagnosis (and many claim misdiagnosis) increased, swelling the population of people who could eventually be deemed to have died from dementia. Indeed, this is noted as a significant contributory factor by the ONS (1).
Looking at all these factors, it becomes clear that there is a lot more at play than simply a condition on the rise. A number of political processes are heavily inculcated in dementia’s current trajectory. Like it or not, the result is that dementia is an increasingly important phenomenon in society. But is this a good or a bad thing? Looking towards potential positives, the resulting media attention promotes awareness, often driving increased resource allocation. This worked brilliantly for the NIA in the 1970s, whose funding subsequently increased 39% annually for 4 years (4), and presenting dementia as a major killer will likely prove just as powerful a fundraiser today. On the other hand, where do these resources go? Well-intentioned money can easily be poorly spent, and as dementia related funding has increased, researchers have arguably benefitted to a greater extent than people with dementia.
I must admit, I wrote this in a Boris-esque attempt to clarify my own opinion of this story. Sadly, it has not really helped. A better insight came from my dad, who after speaking to me about it, rather adamantly told me not to let them put “dementia” on his death certificate. I asked why, to which he responded “well it isn’t true is it.” This is important, because your opinion is probably largely predicated on your preconception of what medicine is. If you envisage medicine as a pure science marching towards progress, with distinct categories uncovered in flawless experiments, then the political process driving dementia probably seems somewhat coercive, akin to a lie. If you take a more pragmatic view of medicine, as a human endeavour like any other, containing a mixture of well-meaning actors and self-interested parties constantly negotiating the vast complexities of life and death, then it is perhaps not so easy to take a position.
- ONS (2016) ‘Deaths registered in England and Wales (Series DR): 2015’, Office for National Statistics. Available at: https://www.ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages/deaths/bulletins/deathsregisteredinenglandandwalesseriesdr/2015 [15.11.16].
- Jones, D.S. & Greene, J.A. (2016) ‘Is Dementia in decline? Historical trends and future trajectories’, New England Journal of Medicine, 374 (6) 507-9.
- Anderson, J (2014) ‘Alzheimer’s around the world: Global and historical perspectives on dementia’, Senior Living. Available at: http://www.aplaceformom.com/blog/dementia-across-space-and-time/ [15.11.16].
- Fox, P. (1989) ‘From senility to Alzheimer’s disease: The rise of the Alzheimer’s disease movement’, The Milbank Quarterly, 67 (1) 58-102.
- NHS (2015) ‘Dementia guide’, NHS Choices. Available at: http://www.nhs.uk/conditions/dementia-guide/pages/about-dementia.aspx [15.11.16].
- Siddique, H. (2016) ‘Dementia and Alzheimer’s leading cause of death in England and Wales’, Guardian. Available at: https://www.theguardian.com/society/2016/nov/14/dementia-and-alzheimers-leading-cause-of-death-england-and-wales [15.11.16].
- ONS (2011) ‘Results of the ICD-10 v2010 bridge coding study, England and Wales, 2009’, Office for National Statistics. Available at: http://webarchive.nationalarchives.gov.uk/20160105160709/http://www.ons.gov.uk/ons/rel/subnational-health3/results-of-the-icd-10-v2010-bridge-coding-study–england-and-wales–2009/2009/index.html [15.11.16].
- Brunnström, H.R. & Englund, E.M. (2009) ‘Cause of death in patients with dementia disorders’, European Journal of Neurology, 16 (4) 488-92.
- Siddique, H (2015) ‘NHS to discontinue dementia diagnosis payments to GP practices’. Available at: https://www.theguardian.com/society/2014/nov/26/nhs-discontinue-gp-payments-dementia-diagnosis [15.11.16].