Richards, Naomi

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3/27/2018 Ageing and Dying are a Continuum | Discover Societyhttps://discoversociety.org/2018/02/06/ageing-and-dying-are-a-continuum/#comments 1/3DISCOVER SOCIETYMEASURED – FACTUAL – CRITICALRAPID RESPONSEVice-chancellors should start planningtheir climb-down strategiesSIGN UP TO RECEIVE A MONTHLY NEWSLETTER WITHTHE LATEST ISSUE OF DISCOVER SOCIETYBECOME A FRIEND OF DISCOVER SOCIETYHelp Support Discover SocietyFind out more about donating to usDISCOVER POLICY PRESSMOST POPULAR POSTS OF THE DAYAGEING AND DYING ARE A CONTINUUM By discoversociety   February 06, 2018   1 Comment    2018, Articles, DS53Email Twitter Facebook 9 Tumblr Google MoreNaomi RichardsWhen I submitted my first article to an international ageing journal (Richards 2012), I was genuinely perplexedto receive a review asking me to justify that 68 counted as ‘older’ and also to be asked why I had assumed thatpeople of that age might be more likely to be contemplating their own death.I had thought the logic of my argument was obvious, but, given that 70 is the new 60, for the journal reviewer68 was just ‘not that old’. Presumably for her, someone was no more or less likely to be thinking about death at68 than at any other age in their life. I wonder now if the reviewer was herself older and was personallyaffronted by the link I had made between ageing and thoughts of death.Statistically, a man in the UK aged 65 has on average 18 and a half years of life remaining and a woman nearly21 years (ONS, 2014-2016). So, the reviewer was technically right that, at 68, a person on average has manyyears of life left. But I would counter that by 68, most people will have experienced the death of family andfriends, undoubtedly prompting contemplation of their own mortality. More than this, they will haveexperienced ageing – its physiological but also psychological effects – which is likely to have prompted somereflection on ‘time left’.Perhaps if I reach 68, I will also feel that death is no closer than it is now, as I near 40. I’ve worked on otherresearch projects that have shown that a ‘timely’ death may always come at an age older than you are now,even at 90 (Richards et al. 2013). But can it really be considered ageist to acknowledge the incontrovertible factthat we all die, most of us (thankfully) in old age?Is it ageist to acknowledge that preceding that death will be months, if not years, of bodily decline, involvingsome anticipation of the inevitability of where one is headed? I don’t think it is to assume that everyone isgripped with a profound existential anxiety, to accept that many older people will be contemplating theirmortality, that the likelihood of doing grows with age, and that along with contemplation might be a desire totalk about what the future holds, without fear of judgement or censor.This professional anecdote highlights a broader trend: that ageing and dying are too often artificially separated(Gott & Ingleton 2011). Research about ageing is published in one set of journals and research about dying inanother – mostly those dedicated to palliative care.It seems that discourses about active ageing, about successful ageing – about the added years of good qualitylife that older people can expect at the beginning of the 21st century – can only take centre stage if ageingstudies turns its back on the three Ds: Decline, Dependency, and Death.This trend extends beyond the idiosyncrasies of academic publishing. The compartmentalization of ageing anddying goes on in real life too. The publishing of academic research in a way mirrors this societal separation.But in failing to acknowledge that ageing and dying are a continuum, we become culpable of a perverse formof death denial. We also risk failing to offer the right form of care at the right time, such as palliative care, tofrail elderly people. And we limit opportunities for conversations with older people about the dying that they     Search... HOME FOCUS VIEWPOINT ARTICLES ON THE FRONTLINE POLICY AND POLITICS CONTACT ARCHIVE3/27/2018 Ageing and Dying are a Continuum | Discover Societyhttps://discoversociety.org/2018/02/06/ageing-and-dying-are-a-continuum/#comments 2/3On the Frontline: Ethnography in a time ofneoliberalised learning and teachingViewpoint: The political theory of enlightenedisolationism, or, in muted praise of JeremyCorbynThe Media and Child AbuseWomen’s Studies, Gender Studies andFeminismFocus: Postsocialism and whiteness – why theYugoslav region was never outside ‘race’QUICKFIRE POSTS – CLICK FOR MOREUniversity Strikes: Reclaiming a space foremancipatory educationRethinking collective action: the 2018university strikeIn Defence of the Public University: TheUSS Strike in ContextWrite for us …‘Not one of you any longer’: EU nationals’Brexit uncertainty and mistrustSUBSCRIBE TO OUR RSS FEEDFOLLOW US ON TWITTERLIKE US ON FACEBOOKinevitably face. It’s just possible that they may want to talk about it. But they need people who are willing tolisten.Recent research tells us that people in their 90s are accepting of impending death and do want to talk abouthow they will die (Fleming et al. 2016). They don’t want to have their questions or reflections dismissed oravoided.The rejection of separate silos that segregate ‘aging’ and ‘dying’ has come to form the backbone of myresearch career to date. And this brings me on to some of the work I’ve done on dementia.In 2016, dementia, became the leading cause of death in the UK. And yet it is commonly not acknowledged tobe a terminal illness by those caring for people with the disease (Livingston et al., 2012; Robinson et al., 2012).This was my own experience conducting research with people with advanced dementia. As an anthropologist, itwas a classic insider-outsider moment for me – when you step into a research field site for the first time, andthe outsider notices the elephant in the room. I was repeatedly struck by the fact that caregivers, bothprofessional and family, didn’t give any indication that they acknowledged how close death was or that anyextensive planning or discussion about it might take place. This isn’t to say that these discussions hadn’thappened privately but that there was no public acknowledgement, no open discussion. And this has beenobserved by other researchers as well.Why is this? The average life expectancy after a diagnosis of dementia is 4.5 years (Xie et al 2008), less than formany cancers. And we also know there is no curative pathway. Yet the supportive care services and regular‘goals of care’ discussions, routinely mobilized in the case of terminal cancer, are much more limited in the caseof dementia. Given that dementia is predominantly a disease of old age, I wonder if this lack ofacknowledgement can be considered another manifestation of the artificial separation of ‘ageing’ and ‘dying’?But in which camp does dementia fall, ageing or dying? In many senses, dementia assumes an anomalous ordisruptive place between ageing and death studies, essentially rejected by both. Dementia isn’t readilyincorporated into death studies and only of marginal interest to palliative care, but then neither is it overtlywelcomed into gerontology. To the three ‘D’s rejected by the active ageing agenda, we could add a fourth:Decline, Dependency, Death and Dementia.The global population is ageing. It is anticipated there will be a three-fold global increase in the number ofpeople with dementia by mid-century – from 50 to 150 million. We also know that dementia is a disease thatevokes a lot of fear in people, particularly in those over 50. As diagnosis rates increase and diagnosis is madeearlier, this is going to give more people more time to contemplate their end of life. The need for openconversations with those newly diagnosed with the disease to my mind is paramount. And these conversationsneed to be had without censor, judgment or casual dismissal of valid fears.I started this article discussing the artificial separation I see being made between ageing and dying. There is noclearer example of this than the case of dementia – which is routinely not acknowledged to be a terminalillness. As the century progresses, we need to break new ground if we are going to rectify the pitiful amount ofresearch and policy attention that has so far been given to dying of dementia. Acknowledging that ageing anddying are a continuum is a good place to start.References: Fleming, J., Farquhar, M., Brayne, C., & Barclay, S. (2016). Death and the oldest old: Attitudes and preferences forend-of-life care – Qualitative research within a population-based cohort study. PloS One, 11, e0150686 Gott, M., & Ingleton, C. (Eds.) (2011). Living with ageing and dying: International perspectives on end of life carefor older people. Oxford: Oxford University Press. Livingston, G., Pitfield, C., Morris, J., Manela, M., LewisHolmes, E., & Jacobs, H. (2012). Care at the end of life forpeople with dementia living in a care home: A qualitative study of staff experience and attitudes. InternationalJournal of Geriatric Psychiatry, 27(6), 643–650. Richards, N. (2012). The fight-to-die: Older people and death activism. International Journal of Ageing and LaterLife, 7(1), 7–32. Richards, N., Ingleton, C., Gardiner C. & Gott M. (2013) Awareness contexts revisited: indeterminacy in initiatingdiscussions at the end-of-life. Journal of Advanced Nursing 69(12), 2654–2664. doi: 10.1111/jan.12151 Robinson, L., Dickinson, C., Rousseau, N., Beyer, F., Clark, A., Hughes, J., . . . Exley, C. (2012). A qualitative study:Professionals’ experiences of advance care planning in dementia and palliative care, ‘a good idea in theory but .. . .’. Palliative Medicine, 27(5), 401–408. Xie J, Brayne C, Matthews F et al (2008) Survival times in people with dementia: analysis from population basedcohort study with 14-year follow-up. BMJ 336(7638)258-362 Naomi Richards is a lecturer in end of life studies in the School of Interdisciplinary Studies at the University ofGlasgow. She is an anthropologist who studies cultural attitudes to death and dying and ageing. Her currentresearch is on global aspects of the death café movement—its claims, its spread, and its translation into differentcultural contexts. She belongs to the Glasgow End of Life Studies group.Email Twitter Facebook 9 Tumblr Google More     3/27/2018 Ageing and Dying are a Continuum | Discover Societyhttps://discoversociety.org/2018/02/06/ageing-and-dying-are-a-continuum/#comments 3/3Name:Nickname..E-mail:E-mail..Website:Website..1 COMMENT RESPONSESLEAVE A COMMENTComment:Your comment.. Notify me of follow-up comments by email. Notify me of new posts by email.SarahFebruary 09, 2018Great article – very well written and thought provoking. About a month and a half ago I took aclinical research position at a small memory center in New Jersey. We run clinical trials forindividuals diagnosed with Alzheimer’s disease. In my position, I am usually the first person thatthe participant meets because I do most of the cognitive assessments. Out of curiosity, I’ve asked acouple of people about their advanced directives – most people didn’t have them but spoke withfamily members about it, but a small subset (I’ve found) seem to have this mentality that “well, I’mnot going to remember, so why even bother?” It’s the ultimate ‘ignorance is bliss’ move, I guess. Ithink it would be fascinating to look at this more in-depth, specifically how planning for deathevolves after getting a diagnosis of Alzheimer’s.Reply SendThe opinions expressed in the items published hereare those of the authors and not Discover Society.ABOUT US  EDITORIAL BOARD  AUTHOR INDEX  TOPIC INDEX  CONTRIBUTE  CONTACT US  DONATECopyright © 2018. Madidus Theme by CreativeKingdom & Different Themes

Ageing and dying are a continuum

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Ageing and dying are a continuum

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