'Dementia: ethical issues' – over ten years on

Perhaps not so different, because in April 2009 cases of the H1N1 flu, or Swine flu, which had originated in Mexico, were picked up in the UK. (Showing, by the way, that the Nuffield Council’s latest report was not just timely as far as COVID-19 goes, but about time when the broader picture of such infections and other global health emergencies is considered!) Still, in December 2009, we were probably more preoccupied by the thought of a general election in 2010 and by the retirement of Sir Terry Wogan from his breakfast show on BBC Radio 2. The other thing of note, in December 2009, was that the Nuffield Council on Bioethics published its report Dementia: ethical issues.

Over ten years later it’s interesting to reflect on the influence that the report might have had. It seems to me its importance should be judged by its tone, which tapped into a movement which had already started but which was to blossom after the report’s publication.

Perhaps the first thing to say about tone is that this in large measure came from the wonderful group of people who made up the working party and the highly able support provided by the Secretariat (now known as the Executive). Of course, I exclude myself from this praise, but it was a complete pleasure to work with such wise, knowledgeable and experienced people. And, although it is invidious to name anyone in particular, much of the tone (with no pun intended) came from the Chair of the working party, Professor Tony Hope, as well as from Katharine Wright who led from the Secretariat. With the help of the working group, they crafted a report which it continues to be a pleasure and inspiration to read.

To be honest, I am not sure that many of its twenty recommendations have been explicitly acted upon. But this reflects, perhaps, their specificity. We were asking for laws, such as the Adults with Incapacity (Scotland) Act 2000 and the Mental Capacity Act 2005, to be modified; and for certain words, such as “proportionate” in connection with restraint, to be better defined in codes of practice. We were impertinent enough to suggest that welfare powers of attorney should be available free of charge, even if we put this slightly more diplomatically in our recommendation.

Nevertheless, although it would be tedious to go through each in turn to prove the point, I would contend that the spirit of the recommendations is alive and well. The first couple, for instance, were about diagnosis and the variation between cultures, as well as about the involvement of families and others close to the person with dementia. These issues are still not dealt with perfectly, but the emergence of memory clinics on a much greater scale and the insistence on targets for diagnostic rates means that both recommendations are in effect being pursued.

Recommendation 3 is about stigma and disability rights. It was aimed at the Equality and Human Rights Commission. A quick search on their website using the word “dementia” is not particularly fruitful. In 2006, the UN Convention on the Rights of Persons with Disabilities (CRPD) had already been passed. It came into effect in 2008. But its impact, at least in the field of dementia, took a while to materialize. Now, however, it is much discussed in the world of dementia, especially by ethicists and lawyers interested in dementia. Our report had a lot to say about decision-making and it is the CRPD’s notion of supported decision making that is exercising many good minds (Donnelly 2019). The relevance of disability rights for dementia is a theme picked up by Tom Shakespeare (a former member of Council) and his colleagues in an inspiring paper entitled Rights in mind: thinking differently about dementia and disability, which attracted media attention and which cites the Nuffield Council’s report. In a recent book co-authored with Toby Williamson, The Dementia Manifesto, we have also discussed issues around stigma, decision-making and rights extensively and, unsurprisingly perhaps, there are numerous references to the Nuffield Council’s dementia report. So even if Recommendation 3 has not been obviously put into effect by the target audience, there was something in the air about inclusion and discrimination which we picked up and which has become a major area of interest.

Further, in 2014, a group of 70 experts met in the House of Lords to discuss the issue of stigma in association with dementia. The experts included three members of the Nuffield Council’s working party on dementia – Professor Hugh Perry, who had spearheaded the whole initiative, Professor Jill Peay and me – as well as the Chair of the Council at the time, Professor (now Sir) Jonathan Montgomery. The meeting led to the publication of A Compendium of Essays: New Perspectives and Approaches to understanding Dementia and Stigma, which naturally enough cites the Nuffield Council’s dementia report.

In the report, we had a lot to say about capacity legislation and the notion of best interests. Again, I think it can plausibly be argued that the discussion in the report was in harmony with the zeitgeist and contributed to it. Five years later, in the House of Lords Mental Capacity Act 2005: post-legislative scrutiny, the approach of the Nuffield Council was being noted and described as advocating ‘a form of supported decision-making which relied on making decisions jointly “with trusted family members.”’

It would be possible to continue in this vein, pointing to areas where the report’s recommendations can be seen to be relevant in much that has happened subsequently.

But the report was much more than its recommendations. Colleagues in Germany, Australia, America, Ireland, to name a few, have commented to me at times on the influence of the report on their work or thinking. Perhaps they were simply being kind!

Nevertheless, we find the report being cited and quoted in a variety of reports and by a range of institutions and organizations over the next ten years. These include various Alzheimer’s associations (e.g. the Alzheimer’s Society, Alzheimer Scotland, Alzheimer Europe, Alzheimer’s Australia, Alzheimer’s Disease International), policy makers (e.g. the Department of Health, the Health Select Committee, the Irish Government, the World Health Organization), practitioners’ organizations (e.g. the Royal College of Psychiatrists, the Royal College of General Practitioners, Marie Curie Cancer Care, Directors of Adult Social Services) and so on.

Dementia as an issue suddenly became sexy, with the UK leading the way. In 2012, the Prime Minister, David Cameron, launched his first national challenge to fight dementia . Many of its themes were exactly in keeping with the concerns of the Nuffield Council’s report: better and more timely diagnosis, dementia-friendly communities, awareness-raising, more support for carers, more funding for research, including social science research. The following year the G8 nations held a Dementia Summit in London, which led to the World Dementia Council being formed to stimulate research and care for people with dementia. The commitments of the G8 Dementia Summit were mostly focused on research to achieve a cure for dementia, which was always a naïve aim given that “dementia” is not one thing but many. The G8 also committed themselves to:

• ‘Call upon all sectors to treat people affected by dementia with dignity and respect, and to enhance their contribution to dementia prevention, care and treatment where they can; and
• Call upon civil society to continue and to enhance global efforts to reduce stigma, exclusion and fear.’

We could not have put it better ourselves!

Indeed, the quality of the Nuffield report has been verified by external research. A team from Hannover, undertook a systematic qualitative review of the literature and listed the full spectrum of ethical issues that arise in dementia care. They found 56 ethical issues specific to dementia care which they grouped into seven major categories. The Nuffield Council’s report identified multiple ethical issues under each of the major categories and identified 43 of the 56 ethical issues (more than any other publication) that were found in the English and German literature.

The process by which the dementia report was compiled obviously worked well. It had involved broad consultation, which perhaps explains why it picked up themes that were to become commonplace over the next few years. Even if we set aside the recommendations, the discussions of restraint, truth-telling, assistive technology, sexual relationships and the like now resonate in the literature. Finally, we must not ignore the ethical framework set out in the report, which has proved to be so rich in guiding discussions of dementia-related ethical issues.

It was suggested to me that I might reflect on the report more personally. Well, it certainly led me to enjoy some memorable trips abroad! For instance, I was kindly asked to speak about the report at the Alzheimer Europe conference in Luxembourg in 2010. In the same year, Alzheimer’s Australia (now Dementia Australia), arranged a two-week lecture tour during which I spoke at all of the major cities (except Darwin) about the report, which included a lecture at the National Press Club in Canberra.

Jokingly, I recently said that the report had determined the rest of my life. This is not quite true! But it has been almost impossible for me to write about ethical issues in dementia without at least mentioning the Nuffield Council’s report. It remains utterly current and relevant. Its tone, being steadfastly on the side of people living with a diagnosis of dementia and of their carers, means it will remain pertinent. Indeed, its ethical framework and the way it deals with a raft of particular ethical issues, which sadly will always occur in dementia care, mean one could almost say it is timeless.

Julian C. Hughes was a member of our working group on dementia and subsequently served on the Council from 2013-2019, being Deputy Chair from 2015-2019. He is Honorary Professor at the University of Bristol and Visiting Professor at the Policy, Ethics and Life Science (PEALS) Research Centre, Newcastle University.