Bioethics Blogs

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.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.