World Alzheimer’s Day, held every year on 21 September, is an opportunity for organisations and individuals around the world to raise awareness, highlight issues faced by people affected by dementia and explores how to help people live well with dementia. Globally, dementia is one of the biggest challenges we face, with nearly 50 million people living with dementia; a number is growing by 10 million every year (or a new case every three seconds).1 Moreover, an increasing number of surveys show that dementia is the most feared disease amongst adults. However, it is possible to live well with the condition if the needs of people with dementia are upheld and dementia continues to be recognised as a public health priority.2 Tackling the global challenge of dementia requires investment in research, effective collaboration and a willingness to adopt evidence based good practice. This week Deloitte and the Alzheimer’s society hosted a panel discussion on dementia which I was privileged to participate in. Given the importance of the subject, I’m using this week’s blog to share the content of my presentation to help maintain the profile of this unrelenting challenge which touches most people’s lives in some way.
My interest in dementia and my relationship with the Alzheimer’s Society began in 2007 when I led a National Audit Office’s (NAO) Value for Money Investigation into the effectiveness of dementia services in England. The NAO’s report, ‘Improving services and support for people with dementia’ shone a spotlight on the devastating scale and extent of the dementia challenge and the need for urgent action to improve the way in which people with dementia and their carers were treated. We found that despite a steeply rising trend in cases of dementia, the condition was given far too low a priority by health and social services and suffered from poor awareness and understanding, which in part was due to the stigma attached to both mental illness and old age. There was also a widely held perception that little could be done and a lack of urgency attached to diagnosing and treating the condition. We drew parallels between our attitudes to dementia in 2007 and our attitudes towards cancer in the 1950s, when there were few treatments and patients were commonly not told the diagnosis for fear of distress.3 At the time the report was seen, and indeed is still seen, as a seminal moment in putting dementia firmly on the UK government’s agenda.
The NAO report was subsequently the subject of a Public Accounts Committee (PAC) hearing, that was concerned that despite its significant human and financial impact, the Department of Health (DH) had not given dementia the same priority status as cancer and coronary heart disease, and the NHS had not afforded dementia the same focus for improvement.4 In response to the PAC recommendations the DH launched a consultation to develop a National Dementia Strategy (NDS). The strategy, ‘Living well with dementia: a national dementia strategy for England’, was published in February 2009.5
A short follow-up update for the PAC in 2010 concluded that the actions taken so far had not matched the rhetoric in terms of urgency and that the strategy lacked the mechanisms needed to bring about large scale improvements. These included ring fenced investment funding, national improvement targets, and appointment of national clinical director – all of which were credited with helping deliver previous strategies like the national stroke strategy - but were lacking at that point. The PAC concluded that without these mechanisms it was unlikely that the intended and much needed transformation of services would be delivered within the strategy’s five year timeframe.6
I joined Deloitte in November 2011 and in 2012 was one of a number of employees who proposed the Alzheimer’s Society as a candidate for our new national charity partner (to run from June 2013 to 2016). The Society was shortlisted and when staff votes were counted the Society received around half of all the votes, demonstrating just how much improving dementia care was seen as a worthwhile issue, by what is a relatively young staff cohort, many of whom have had personal experience of a family member or friend with dementia.
Deloitte’s strap line for its partnership with the Alzheimer’s Society was “Care for today, cure for tomorrow”. The five priority activities were: “Awareness, Volunteering, Fundraising, Pro-bono work and the Deloitte Research Programme”. Staff were also encouraged to make a personal statement by becoming a Dementia Friend or a Dementia Champion.7
Once established as charity partner, I undertook a research project for the Society to evaluate the achievements of the NDS and identify what more was needed. The research involved a detailed literature review, and once established as charity partner, I undertook a research project for the Society to evaluate the achievements of the NDS and identify what more was needed. The research involved a detailed literature review and:
- an evaluation and interpretation of the outcomes of two roundtable discussions involving leading experts in the field of dementia
- an analysis of the results of a follow-up survey of attendees and a wider group of leading experts.
Our joint report, ‘Dementia today and tomorrow: A new deal for people with dementia and their carers’ was used by the Society to promote debate and discussion on what further action is needed to make dementia care fit for the 21st century.8
It acknowledged the important role of the then Prime Minister (PM), David Cameron’s three year Dementia Challenge published in 2012 -which described dementia as “a national crisis”9; the subsequent work in relation to the dementia challenge and the more recent Prime Ministers Challenge on Dementia 2020.10
There is no doubt that there have been tremendous improvements in the diagnosis and supporting people with dementia in the years since the 2007 report. Indeed, in 2009, England led the world in implementing a National Dementia Strategy, and in June 2017 Canada became the 30th country to launch a National Dementia Strategy.11 The importance David Cameron’s championing of the issue and putting it on the agenda of the G8 summit in London was a truly game changing achievement. However given the increasing prevalence and costs, and the social care challenges facing the UK there is no time to rest on any laurels and there is much more that still needs to be done. Importantly, there is an overwhelming need to reiterate the clarion call in all the above documents for more investment in dementia research; a subject I will return to next month.