‘Our grandparents’ dementia didn’t matter to us as children’

As a child I was fortunate to experience a wide range of older people. That all four grandparents had dementia mattered not a whit to us as children. One grandfather made tea using tobacco; the other reverting to moistening his cheroots by inserting them completely into his mouth as he had learned in the trenches at the Somme. With or without dementia, their independence of spirit was notable and intriguing.

Our unquestioning acceptance of them was tempered and transmitted through the lens of care, interest, and engagement shown by my parents and their family.

These experiences almost certainly informed my career choice as a geriatrician, and the vast majority of geriatricians share this abiding sense of enjoyment and fascination of working with older people, the most complex, enriched, and challenging of patient groups.

I was also fortunate to encounter the writings of a range of visionaries early in my career, particularly Stephen Post (The Moral Challenge of Alzheimer Disease, 1995) and Tom Kitwood (Dementia Reconsidered, 1997) who emphasised the wholeness of our personhood in dementia, albeit challenged by barriers of memory and language from our usual patterns of social engagement.

A contributor to negative public perceptions of dementia is our hypercognitive culture, the product of rationalism and capitalism, whereby clarity of mind and economic productivity may seem to determine the value of human life.

This disproportionate emphasis on cognitive function robs our ethical system of a basic equality among humans. As Post writes, we need to convert the dictum “I think, therefore I am” to “I will, feel and relate while disconnected by forgetfulness from my former self, but still, I am”.

The Judaeo-Christian ethic of caring has never accepted that the value of human life rests in reason and memory alone, but modern society has had difficulty in accepting this loss of cognitive function

And it is not only the general public but also healthcare workers who can have a troubling negativity towards the humanity and complex care needs of people with limitations of cognition. As recently as last month I was taken aback to hear a senior clinician in the neurosciences stating on television that he would prefer death to dementia, commenting “Alzheimer’s is a nasty disorder”.

For those of us with family with dementia, while we do not wish for them to have the illness, we do not wish for them to be taken away. Repeated studies have shown preserved quality of life for those living with dementia, with distress to varying degrees among those who live with and care for them, particularly in terms of altered dynamics of communication and relationships.

Our challenge is to understand the complexities of the syndrome, with many affected in a mild manner, many able to clearly enjoy relationships, company, and activities. In the later stages, the neurological deficits may make such communication more difficult, but a key research must be to facilitate our communication at these levels.

This negativity is thankfully countered by a range of activists in Ireland, as evidenced by an excellent resource pack for transition year (http://dementia.ie/news-events/news/teach-your-students-about-dementia-with-our-new-resource-for-schools) recently released by Suzanne Cahill and her team in the Dementia Services Information and Development Centre, and Kate Irving's DCU Elevator programme (http://dementiaelevator.ie) to train a wide spectrum of workers in sensitivity to the altered dynamics of communication with dementia.

It is also good to see the HSE Awareness Programme (understandingtogether.ie) launched yesterday, despite the deep irony of this occurring when the HSE is choking access to Home Care Packages, a pillar of support for people living with dementia and their families, a major erosion of their civic equity.

However, the political impetus to develop appropriate supports for those of us living with dementia depends critically on nurturing our sense of solidarity and shared humanity, and dissolving the negativity and stigma which still encrust popular perceptions of the syndrome.

If this campaign can foster this positivity and can-do attitude, it will be worthwhile.

For readers who wish to probe in more depth the possibilities to open up such opportunities for those living with dementia, I strongly recommend Anne Basting's Forget Memory and How We Age by Marc Agronin.

They illuminate how we can try to realise the elements of happiness in life – something to do, someone to love, and something to look forward to – rather than succumbing to cliché, stigma and diagnosis as disaster.

Prof Des O'Neill is a geriatrician at Tallaght Hospital and author of Ageing and Caring: A Guide for Later Life (Orpen Press)