The first report launch I worked on here at the Nuffield Council was the 2009 publication ‘Dementia: ethical issues’. At the time, I didn’t quite realise how much, almost five years on, we would all still be talking about it.
In addition to setting out an ethical framework for working through ethical dilemmas in dementia care, one of the main points made in the report was that there is a clear moral imperative to tackle the stigma that still exists around dementia. With this in mind we made a number of recommendations on how to better include people with dementia in society, such as encouraging service providers like shops and restaurants to make reasonable adjustments for people with dementia.
Fast-forward five years and there has been some great progress towards the challenge of making society more ‘dementia friendly’. Some of you will have seen the ‘I get by with a little help from my friends’ TV adverts, which started in May. These are part of a campaign by Public Health England and the Alzheimer’s Society to encourage people to become dementia friends. We warmly welcome this initiative, probably the best known of the national developments aiming to foster inclusion of people with dementia in society. Locally, London has laid claim to being the first dementia friendly capital city. Other schemes that we have recently been made aware of include: a Sikh temple leading the way in dementia-friendliness; the first theatre in the UK to sign up to the Dementia Action Alliance; and a new ‘memory box’ project funded by the Nominet Trust.
Our dementia framework has also been picked up north of the border, where it has informed discussions on Scotland's National Dementia Strategy 2013-2016 and is continuing to inform current work by NHS England and the BMA on the timely diagnosis of dementia. Earlier this month we heard about the provision of extra funding for dementia training in Scotland – this is welcome news, as access to ongoing training and education for professionals was another important recommendation in our report.
Access to resources for professionals has also been provided by the Royal College of GPs, which recently published a ‘dementia roadmap’ resource that provides GPs and other primary care staff with a range of sources and advice they might need as a patient’s dementia develops. It includes our report – specifically, six components that make up our ethics framework.
The flurry of UK initiatives has been echoed at a global level, with several dementia policy developments reported in recent months. This spring has seen the establishment of the World Dementia Council, who cite raising awareness as one of their six priority areas and the Global Alzheimer’s and Dementia Alliance which aims to help foster collaboration between international NGOs, professional associations, governments and international statutory bodies in order to raise awareness about Alzheimer’s disease and other forms of dementia.
Soon after we published our report, in 2010, the WHO estimated that 36 million people worldwide were living with dementia and that incidences of Alzheimer’s disease and other types of dementia will nearly double every 20 years. And for every person who has dementia, there is an inner circle of carers and family members who will be deeply affected by the changes that it brings. This is why developments in dementia policy are so important, and why we as a society must continue to keep talking about dementia, and supporting those affected as best we can.
I completely agree Sarah. 'Dementia: Ethical Issues' in 2009 was very timely. It came after other reports had started to raise the profile of dementia, e.g. the NICE-SCIE Guidelines appeared at the end of 2006 and the National Audit Office's report 'Improving Services and Support for People with Dementia' in 2007. The Nuffield Council's report came out in the same year as the National Dementia Strategy for England. But since then things seem really to have taken off, right up to and including the G8 Summit. And the influence of the Nuffield Council's report, as you say, can be seen in a number of important documents and initiatives.
There was a recent systematic qualitative review of the ethics literature around dementia which stated: 'The Nuffield Council report provides a good example of how some of the complex DSEIs [Dementia-Specific Ethical Issues] captured in our DSEI spectrum can be addressed by providing a set of criteria that do not indicate a one-size-fits-all solution for ethical challenges but rather guide the process of ethical decision-making in dementia care' (Strech et al (2013) 'British Journal of Psychiatry' 202, 400–406). The thought behind the Nuffield Council's dementia report still seems vital as we see battles over the timing of diagnosis and as we hear about, on the one hand, tremendous advances in scientific understanding, and yet (on the other) poor levels of care and poor resources in communities and care homes. The two notions of solidarity and personhood with which the Report concluded its ethical framework still seem to capture for me the sense of a moral imperative that is required in our thinking about dementia.