Dementia, Truth and Rights

Glasgow 20th-22nd October 2014 – outside, the edge of Hurricane Gonzalo whipping up the River Clyde; inside, talk of human rights exciting the delegates at the 24th annual conference of Alzheimer Europe. Candidly, I hadn’t really expected to be quite so excited by what I heard. Interested and stimulated, of course, but the excitement came from the repeated declarations that the rights of people with dementia needed now to be placed centre-stage.

Key to the event was the signing of the Glasgow Declaration, a commitment to promoting the rights, dignity and autonomy of people living with dementia across Europe.

One of the many admirable points about Alzheimer Europe is that they do not just talk the talk; for instance, central to much of what they do is a European Working Group of People with Dementia. At this conference people with dementia and their carers had reserved seats at the front of every parallel session, whilst in the main hall – filled with over 800 delegates – people with dementia and their carers sat, not just at the front, but at tables with table cloths and refreshments. The hoi polloi – doctors, nurses, social workers, academics and so forth – sat further back on ordinary chairs.

I was there to speak about the Nuffield Council’s report Dementia: Ethical Issues published in 2009. Five years later, our ethical framework is as relevant as ever - both to day-to-day clinical and personal dilemmas, such as how to deal with sexually disinhibited behaviour, as well as to broader social attitudes towards dementia.

Truth & solidarity

As our session on ethics demonstrated, lying has become a hot topic – three out of the six presentations mentioned it. Our report discussed lying and truth-telling, but the idea that is now causing real interest is that of ‘therapeutic lying’. Indeed, the Mental Health Foundation is in the midst of an enquiry into dementia and truth-telling, which will report next summer. Can lying be “therapeutic” and therefore excusable? Or should the concept be reconceived? The ethical framework in the Nuffield Council’s report on dementia presents a rich way in which to consider the issues, albeit there are no simplistic solutions.

The idea that none of us can ignore dementia, because it is so prevalent, but (at a fundamental level) because we are all interconnected and interdependent, takes us back to the need at a societal level to include people with dementia, as well as close carers. This notion of solidarity captures the broader social attitudes to dementia, which was the sixth component of our ethical framework.

The Alzheimer Europe conference was determinedly inclusive. Like the theatres that hold dementia-friendly performances, the choirs for people with dementia, the whole endeavour to encourage dementia-friendly communities, even in the Houses of Parliament, there have been many signs recently that the emphasis on solidarity in our report was timely and important. So, too, was its discussion of disability rights.

Disability rights & supported decision-making

This takes me back to my excitement in Glasgow, where several key note speakers, and others, gestured at the UN Convention on the Rights of Persons with Disabilities (CRPD), and in particular to Article 12, which concerns equal recognition before the law. I should add that even seeing dementia as a disability and, therefore, as open to the arguments supporting disability rights, is still a new step for some.

Sections 2 and 3 of Article 12, ‘recognize that persons with disabilities enjoy legal capacity on an equal basis with others’ and that they should be supported ‘in exercising their legal capacity’. Now, this is a challenge and an exciting one, but it raises a concern about the current, beneficial, vogue for shared decision-making.

As Toby Williamson, from the Mental Health Foundation, said at the conference, shared decision-making (which is by no means the norm in dementia care) sounds as if some of the decision is made by the professional. Supported decision-making suggests it is solely the decision of the person concerned.

Toby Williamson also questioned whether the Mental Capacity Act 2005 (MCA), which governs decision-making in England and Wales for those who cannot make decisions for themselves, is compatible with the CRPD. The MCA allows that people with disabilities can have decisions made for them, if they lack capacity. People with dementia are not on an equal legal footing with others under the CRPD because, since they have an impairment of the mind or brain, a question can be raised about their ability to make decisions. Those of us who do not have such a disability of the mind or brain are allowed to forget or not understand details of our mortgages or insurance policies without being called incompetent. But if you have dementia, a similar lack of clarity, if it can be ascribed to the dementia, means that you lack the capacity to make the relevant decisions.

Does it make sense, however, to say that those with the most severe dementia should be supported to make decisions, as if they are taking part in the decision-making? Does not the substituted judgement approach, which mostly governs the MCA, make more sense? In other words, at some point is it not fairer to say that the person can no longer make the particular decision and, therefore, it must be made for the person, taking into account what he or she would have wanted under these conditions? The CRPD is uncompromising. We must push forwards in our endeavours to turn decision-making for people with dementia, and all people with disabilities, into supported decisions. Lawyers are talking about a legal paradigm shift, one which is both ethical and political.

When it comes to the provision of health and social care services, this would be a shift of potentially immense proportions. But at the individual level it is no more, and no less, than a declaration of fundamental rights. This is exciting and heady stuff. When, however, we turn to correlative duties – the ways in which society must realise these rights – the challenge is enormous. Respect for personhood and the claims of solidarity, which were pillars of the ethical framework in Dementia: Ethical Issues, none the less impel us to take up the challenge.

Council member Julian Hughes is a consultant in Psychiatry of Old Age in Northumbria Healthcare NHS Foundation Trust and an honorary professor of philosophy of ageing at the Policy, Ethics and Life Sciences (PEALS) Research Centre, Newcastle University. He was on the Council’s working party on dementia and is the author of ‘How We Think About Dementia’ published by Jessica Kingsley (London and New York, 2014).