Why we need narratives about suffering in old age

Narratives elderly

There is a collective aversion when it comes to facing the realities of old age, or so John Harris argued in The Guardian last February. Harris is, of course, not the first to point at a widespread public revulsion of growing old, and the association with loneliness, isolation, powerlessness and uselessness. Nowadays, many of us view a longer life as a mixed blessing. We embrace the so-called vital ‘third age’, but we collectively turn our backs to the frail ‘fourth age’. I believe we should control this tendency and fully face the fourth age including its difficulties.

‘Good’ old age

It is easily understandable that people want to age as healthily, actively and independently as possible. We seek to achieve a ‘good’ old age that is characterised by personal contentment, physical health and social well-being; and these aims underpin most gerontological research. Driven by emancipatory ideals, a great deal of effort is put into counteracting stereotyping and negative framing of old age through promoting an ethos of good and successful ageing.

This somewhat one-sided emphasis on the bright side of ageing makes it more difficult to acknowledge the darker sides of growing old. It leaves us with a sense of a widening gap between the fit and the frail. As well as making it harder for us to take a realistic view of what our own old age might contain, the prospect of increasing dependency, and the decline towards decrepitude and death, it also – and this might be even worse – exacerbates the difficulties we might have in giving proper attention to older people already dealing with this condition.


A few days after reading Harris’ opinion piece, I also read an interesting article by Chris Gilleard on suffering in old age. In his article, Gilleard goes one step further by making a strong moral plea for addressing the topic of suffering much more explicitly and emphatically in society as well as in ageing studies.

It so happens that this is what (an important part of) my own research is about, namely mapping out the despair of people suffering from life in old age, and I use the word ‘despair’ here with care. By means of in-depth and longitudinal qualitative research, I have been trying to illuminate the lifeworld of those older people who consider their lives to be over and no longer worth living, and consequently ideate on a self-chosen and self-directed death.

Three reasons

My research has convinced me of the need for plain narratives about the nature of suffering in old age for at least three reasons, namely: 1) understanding, 2) recognition and 3) consolation.

First, narratives about sadness and suffering associated with age are very important for enlarging our understanding, both at a personal and societal level: What does the suffering mean for the person involved? How and to what extent is life threatened in their eyes? Andrew Sayer (2011)((Christian Smith (2015) Why Things Matter to People, Journal of Critical Realism, 12:2, 255-259, DOI: 10.1179/rea.12.2.x27354640x0r1417 )) has highlighted the importance of taking people’s concerns seriously, not merely to recognize them as private emotions, but to view them as illuminations of what is happening in our society. What needs to be taken seriously?

In his book, Sayer states: “Needs, desires, suffering and a lack of well-being indicate a state of the world and some aspects of that world that should be changed.” Personal stories should never to be reduced to (or even neglected as) ‘arbitrary, subjective experiences’, but serve as an imperative for an on-going public debate on the place and role of elderly in society.

Secondly, most of the older people with a death wish whom I interviewed over the last few years experienced an enormous loneliness around their difficulties. They often lacked a sense of recognition by others. They had the impression that their close ones (and professional carers) tended to avoid talking about their suffering, let alone about their wish to die. Instead, these individuals – with the best of intentions no doubt – tended to distract their attention by talking about fun things (i.e. nice weather or nice planned outings).


The deepest wish of my interviewees was, however, not that somebody would respond to their problems by distracting their attention or by trying to ‘solve’ their suffering – often they didn’t even believe that it was possible to solve their suffering. Rather they wished for somebody who just acknowledged their struggles and was willing to encounter their pain and sadness by listening to and connecting with their stories.

Such acknowledgement of their sadness and suffering was often experienced as deeply consoling. I fully agree with Gilleard that serving as a witness of suffering can be seen as a basic for an ethics of human dignity and a call upon social solidarity. If we want to counteract the social neglect, exclusion and/or abjection of the oldest old, we should control the tendency to turn our backs to tragic (often unsolvable) sides of the fourth age and instead pay full attention to struggles that people might experience, suppressing the impulse to immediately dissolve or intervene their pain.

Author: Dr. Els van Wijngaarden

This blog is a re-post. The original reference is: Three reasons why we need narratives about suffering in old age, The Oxford Institute of Population Ageing, 18th Apr 2018. 

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Who cares? Caring with technology

home care technology

‘Who?’, put short and simple, sounds rather banal, but has turned out to be a missing question in current debates about future perspectives of care arrangements in Germany for the („more and more demented“) elderly. Who cares for whom – concretely, day to day with attention and competence since we are facing a huge care gap from the side of the care-givers: While the number of future care-receivers is doubling, the amount of potential care-givers is declining (Klie 2014; Kohlen 2010).

Over the last couple of months I have been observing a discourse in politics and academia in Germany that shows an excitement about technological advancement in home care and which is supposed to secure the elderly in their home despite certain diagnostic signs and self-perceptions of frailty. Nevertheless, as studies have revealed (see especially Alistair Niemeijer 2015, Jeannette Pols 2012) the use of technology is arranged and continuously re-arranged by somebody.

Home Care

In home care, the cyclic process of integrating technology is mostly done by nurses who keep an eye on how patients handle the self-made measurements on their body and do the interpretation. In her ethnographic studies, Jeannette Pols (2012) shows how nurses and patients re-shape care when they start using telecare devices. Actual care practices employing surveillance technology do not resemble the hopes of the industry and policy makers. Surveillance technology cannot substitute care practitioners and it is not known whether there will be new challenges including pressing ethical questions facing “good” practices as we can learn from Alistair Niemeijer’s study (2015).

Last week after my lecture on Ethics, care and gender, students handed in their essays about the topic. While reading the essays over the last days I realized that the question “who is taking care of whom in the future?” was something they have not come across before. One student put it like this: “In order to prepare the future of home care we need to consider different structural formats, that is to say, what are possible arrangements; and who is supposed and willing to do the care work” (Theresa Wied).


Right now, we know: Not only the care-receivers are mostly women, but also the care-givers. In home-care as well as in the elderly homes, two out of three carers are women. Among the care-givers who do informal care – without support from professional care practitioners – are more than 70% female and less than 30% male. Professional home care is done nearly only by female nurses (90%) and the numbers are closely the same when we look at the female care givers in nursing homes (Schneekloth 2006, Kohlen 2010).

One concluding thought: to engage with current scholarly work as well as political statements by policy makers on care and technology is to enter different discussions and see how is dealt with the who- questions. “Thinking from women’s lives” (Harding 1991) in which care often occupies an important place through the life span might be a fruitful idea.