Dignity can be retained in Alzheimer's

 

Our challenge is to seek out, and respond to a person’s humanity, and not allow ourselves to diminish their place among us, writes DESMOND ONEILL

NOT UNCOMMONLY, I hear reference to someone with Alzheimer’s disease in terms such as: “It’s so undignified for him”. This is a marker of how complex it can be to understand the durability of our intrinsic humanity when suffering from dementia.

While no one wishes to have this (or any other) illness, in 25 years of working with people with dementia, my experience is that they do retain their dignity: indeed, loving families grieve for the changes but still very much love the person. Our challenge is to seek out, and respond to this humanity, and not allow ourselves to diminish their place among us.

The high profile of the celebrated author Terry Pratchett allows us to rethink our attitudes to one of the most important illnesses of later life. Through his public lectures and visiting professorship in the Department of English in TCD, his wit, perceptiveness and continued writing in the face of Alzheimer’s disease help to undermine the bleakness associated with the illness.

Unchecked, such negativity is not only a challenge to support from the lay public (and indeed, many healthcare professionals), but almost certainly underlies some very unhappy events reported in recent weeks.

These include the heart-rending images of a Northern Irish “carer” abusing a person with Alzheimer’s disease by eating their food, and yet another traumatic death of a person with dementia from controversial restraints reported in an Irish coroner’s court.

While Pratchett retains eloquence and remarkable insights, he and many others worry about what happens in the later stages of the illness. In examining this widely held fear of loss of dignity, several elements surface.

What might be at stake is our vision of how the other person, or our future self, “should” be (but, as the old joke goes, if you want to make God laugh, tell him your plans), our prioritisation of productivity and cognition over other human values (do we fall in love because of IQ?), and a failure to understand that “loss of dignity” is nearly always imposed by others.

Whether through failure to provide privacy when toileting, inadequate support and appropriate access to that which they enjoy, or rigid care routines which then lead to distress and behavioural disturbance, it is increasingly clear that we can do better.

The challenges are profound: for example, some propose using new technology such as electronic tagging for those who wander with dementia. Yet what else do we use tagging for? Newborn babies, prisoners and animals offer unhappy parallels – infantilisation, custodial care and dehumanisation.

One aid to a better approach is Richard Sennett’s Respect, a thoughtful analysis of the challenge of simultaneously assisting and engaging in a respectful way with groups of differing status in society. He wonders why respect – which, unlike food, costs nothing – is in such short supply.

His analysis is deceptively modest: “Treating people with respect cannot occur simply by commanding it should happen. Mutual recognition has to be negotiated; this negotiation engages the complexities of personal character as much as social structure.”

Levelling the playing field in such negotiations for those among us with dementia has been aided by the seminal work of Tom Kitwood: his Dementia Reconsideredis a practical and empathic reflection emphasising how the wider aspects of personhood are expressed in dementia.

This is now incorporated in much gerontological nursing and dementia care training. Such training should be a sine qua nonfor those caring for older people, whether in hospital or in the community, but only a minority of those involved have it.

Who will promote the wider dissemination of such vitally important knowledge, skills and attitudes? Hopefully, us in the first instance: most of us will have the good fortune to live into later life, when about one in 10 of us will have some form of dementia, much of it mild.

We all have an interest in the wider development of articulacy and skills which allow a fuller perception of our personhood, not just for ourselves, but also for loved ones who are affected.

We should also be more demanding of the care professions, and in particular nursing and medicine, which have not yet given the development of such empathic knowledge as central a role as it deserves: perhaps a role for the lay representatives on the Medical Council, and an argument for more lay representation on An Bord Altranais?


Prof Desmond O’Neill is a consultant in geriatric and stroke medicine