No means no for people living with dementia
Sir, – It was truly sad to read of the groupthink in the Netherlands that endorses the dismissal of personhood of people living with dementia, as implied in the article “Groupthink exposed in prosecution of Dutch doctor in euthanasia case” (Hague Letter, World, June 23rd) .
The great pioneer of dementia care, Tom Kitwood, described the malignant social pathology that the world applies to those living with dementia. These attitudes include invalidation, banishment, infantilisation, objectification and disempowerment, leading to a betrayal of our social contract and solidarity.
In our teaching of dementia care, we remind carers, students, and trainees of how the barriers of memory and language impairments can obscure the inner life, preserved relationships, and signals of those living with dementia. We signpost this by understanding that all behaviour has a meaning and seeking to learn to interpret this more sensitively. We also teach that we can change and grow with our condition, and to the end can partake in care decisions to an often considerable extent by signalling consent or refusal of treatment through word, gesture or bodily expression. Indeed, this is the basis of recommending advance-care preferences with strong moral force over legally binding advance directives which deny our ever-changing future selves.
Dementia experts and advocates around the world were horrified when this older woman in the Netherlands was euthanised, having clearly signalled what to dementia practitioners was refusal to proceed, and had to be restrained to have the lethal dose administered, a truly barbaric scenario. No means no for people living with dementia too. – Yours, etc,
Prof DES O’NEILL,
in Geriatric and
Tallaght University Hospital,
Professor in Medical
Trinity College Dublin,