John Swinton

What’s in a name?

Why people with dementia might be better off without thelanguage of personhood

Abstract: The paper explores the issue of personhood within the context of thelives of people with advanced dementia. It frames the issue of personhoodtheologically as an aspect of naming, emphasising the power of naming for theways in which we respond to things in the world. If we choose to name dementiain terms of personhood and non-personhood with the value of an individualgauged by their ability to do or not to do certain things then there are dangers.Non-persons lose their value and some suggest lose their right to life. Drawing onthe philosophy of Robert Spaemann and the theology of Rowan Williams, thispaper offers a counter-response which positions the value of all people as lying inthe prevenient love of God.

Zusammenfassung: Der Artikel untersucht das Problem von Persönlichkeit inBezug auf das Leben von Menschen mit Demenz im fortgeschrittenen Stadium.Persönlichkeit wird theologisch erfasst als ein Aspekt von Namensgebung, wobeidie Gewalt des Namensgebens hervorgehoben wird als die Art und Weise wie wirauf Dinge in der Welt reagieren. Wenn wir Demenz unter der Perspektive vonPersönlichkeit und deren Nichtvorhandensein betrachten, wobei der Wert desEinzelnen gemessen wird an der Fähigkeit bestimmte Dinge zu tun oder nicht zutun, dann wirft dies Gefahren auf. Nicht-Personen verlieren ihren Wert undmanche schlagen vor, sie verlieren ihr Recht zu leben. Der Artikel bietet mit Bezugauf die Philosophie Robert Spaemanns und die Theologie Rowan Williams einenGegenvorschlag, der den Wert aller Menschen in der vorlaufenden Liebe Gottesfestsetzt.

DOI 10.1515/ijpt-2014-0017

It matters how we name things. One of the interesting things about the Genesisaccount of creation is the way in which Adam’s act of naming brought things into

Prof. John Swinton: University of Aberdeen – School of Divinity, History and Philosophy, King'sCollege, ABERDEEN AB24 3UB, United Kingdom, Email: j.swinton@abdn.ac.uk

IJPT 2014; 18(2): 1–14

existence1. As the animals lined up before him and as he gave each of them aparticular name, so they became that name. Lions became lions, tigers becametigers and all of God’s creatures found out who they were through Adam’s practiceof naming. What was true for Adam is true for all of us. The ways in which wename things not only brings them into existence in a quite particular way, butalso determines howwe see them and howwe respond to them. Practical theologyis interested in exploring Christian practices. One practice that doesn’t get a lot ofattention is the practice of naming.

In this paper I want to explore something of the practice of naming through acritical theological reflection on the issue of personhood as it relates to the livesof people with dementia in general and advanced dementia in particular. Byadvanced dementia I mean that time in people’s lives when their cognitive declinehas left them in a situation where they cannot remember who they are orrecognise those whom they love. Being in the world in such ways means that, attimes, it may appear that many of the markers of who someone is – those thingsthat gave them a sense of self and identity in life – have shifted and changed inways which raise deep questions about their identity and personhood. Withinsuch a context, the ways in which people choose to name those with dementia areof profound importance. How you are named will determine how you are per-ceived and the ways in which you are treated. Some may remember your nameand choose to treat you as they always did: with love, respect, care and dignity.Others however, will choose to forget your name and either ignore you or pretendthat you are no longer there. Of more concern is the fact that some will try to giveyou a new name – “dementia sufferer,” “Alzheimer’s victim,” “non-person” –which will open you up to all sorts of dangers and difficulties. In what follows Iwant to reflect on what occurs when someone is given the name of ‘person,’ ormore specifically, when they are given the name ‘non-person.’ I will argue thatthe practice of naming someone a person or a non-person is a dangerous practice.Whilst it may hold some benefits in certain circumstances, naming someone aperson or a non-person is an unhelpful construction that can occlude someone’shumanness and open them up to interpretations and assumptions which canquite literally be deadly for people with dementia. I will make an argument thatwe need either to get rid of the language of personhood altogether, or at leastradically revise it in ways which make it both theologically sound and sociallyprotective of people who are deeply vulnerable.

2 John Swinton

1 I am grateful tomy good friend Brian Brock for drawingmy attention to the power of naming.

Who wants to be a person?

You have caused my friends to abandon me; you have made me repulsive to them. Iam closed in and cannot escape■”

(Psalm 88:8).

In beginning to open up the key issues that drive this paper I want to begin byoffering two narratives, both of which in different ways highlight the dangers ofthe language of personhood. The first story is personal. I have a good friend,Peter, who has had dementia for a number of years. He is now at that stage in hislife where he has forgotten his family, his friends and much if not all of hispersonal history. He has in a real sense, forgotten who he is and to whom hebelongs. Recently I had a brief conversation with one of his friends. I asked him ifhe had visited Peter recently. His answer surprised me. He said: “I have nevervisited Peter since he went into the care home. I feel that I just want to rememberhim for who he was. I hear that he is just not the person he used to be” His answersurprised me, mainly because I don’t really understand what he meant. “I justwant to remember him for whom he was” struck me as a very odd thing to say.What might it mean to say that you want to remember someone as the person theyused to be? The underlying presupposition seems to have been that my friendPeter somehow no longer existed, or if he did exist, his being had become soradically transformed that memories of him were more important than currentlybeing in his presence. (of course one can never really be in his presence as, so itappears, he has gone; gone, although to where is not quite clear). But what couldthat possibly mean? Where has he gone? What has changed so radically that evenhis friends no longer recognise him or want to be in his presence? And moreimportantly, if he has somehow “gone,” then what are we to do with Peter’sremaining body? Why would we choose to love it if we actually believe that he nolonger inhabits it? Why should we care? Some of course would argue that weshouldn’t.

A duty to die

Can the darkness speak of your wonderful deeds? Can anyone in the land offorgetfulness talk about your righteousness?

(Psalm 88:12)

In a 2008 interview with the Presbyterian Church of Scotland’s magazine Life andWork, the British Philosopher and ethicist Baroness Mary Warnock raised sharply

What’s in a name? 3

■ Dear Author, please check the quotation marks at the placeholder above, thank you very much.■

the issue of personhood as it relates to people with dementia. Reflecting on whyshe has left instructions with her solicitor and doctor expressing a desire not to beresuscitated when she dies, she moves on to talk about dementia:

The real fear, I think shared with nearly everyone, is that I become demented. I’ve leftinstructions that if I contract pneumonia or something that I’m not to be given antibiotics,but there’s not much else I can do….If you’re demented, you’re wasting people’s lives – yourfamily’s lives – and you’re wasting the resources of the National Health Service.■” I [theinterviewer] point out to her that the argument for euthanasia usually revolves around pain,and that people with dementia are not normally subject to great pain. “I don’t think that’sthe full argument,” she says shaking her head. I’m absolutely fully in agreement that if painis insufferable, then someone should be given help to die, but I feel there’s a wider argumentthat if somebody absolutely, desperately wants to die because they’re a burden to theirfamily or the state, then I think they too should be allowed to die. Actually I’ve just writtenan article called ‘A Duty To Die?’ for a Norwegian periodical. I wrote it really suggesting thatthere’s nothing wrong with feeling you ought to do so for the sake of others as well asyourself2. (italics added)

Warnock goes on to make a case for advanced directives wherein a person couldappoint an advocate to ensure that one’s life was ended under certain circum-stances:

I think that’s the way the future will go, putting it rather brutally, you’d be licensing peopleto put other’s down. Actually I think why not, because the real person has gone already andall that’s left is just the body of a person, and nobody wants to be remembered in thiscondition3.

For Warnock, the best way of naming people with dementia is that they are notreally persons at all. They may look human and indeed they are human, but theyare no longer persons. Instead she names them as non-persons who are a burdenon society and a burden on the National Health Service. Not only should they havea right to die, they actually have a duty to die. If they are unwilling to exercise thatduty themselves, then the state should employ people to kill them. So suicide orlegalised killing seems to be the two alternatives that are open in terms of“dementia care4.” Why does Warnock think that this is a justifiable position?Because, she chooses to name people with dementia as non-persons. The “non-

4 John Swinton

■ Dear Author, please check the quotation marks at the placeholder above, thank you very much.■

2 Jackie Macadam (2008) Interview with Mary Warnock: ‘A duty to die?’, in Life and Work,October 2008, 23–25, 25.3 Warnock, “A duty to die?”, 25.4 Lest we should dismiss Warnock’s views as extreme or improbable, it is worth noting that “thenumber of Dutch people killed by medical euthanasia has more than doubled in the ten yearssince legislation was changed to permit it” The Telegraph. http://www.telegraph.co.uk/news/

person” before us may have some features of the person they used to be, but infact that person is no longer there. The presence of their bodies is a crueldeception; the person has clearly gone. We can see a similar dynamic in a numberof contemporary ethicists and philosophers5. But, as we have already seen, wecan find the same kind of naming in everyday conversational language (she is justa shell; he is not the person he used to be). The person with dementia has gone;therefore it is justifiable either to abandon them or to kill them.

But surely this is Cartesian dualism of the worst kind? The body is perceivedas only a shell which hosts and responds to the real person who is lodged in themechanisms of a mind that has only a tenuous association with the body. Whenthe “thinking self” appears to be in decline, the assumption is that the person issomehow slipping away. Quite apart from the fact that there is convincingempirical evidence that this is not what happens, even in advanced dementia6, ifWarnock’s argument was to be taken seriously it would be devastating fordementia service provision. If the real person has gone and all that is left is ashell, then what are those offering care to people with dementia to make of thesesoulless bodies that they care for day after day. If these people are not persons,why should they be treated with dignity, respect, value or care? “If I want to abuseor neglect these “bodies” then that is fine isn’t it? It’s not like I would be abusinga real person!” But then again it might not matter as we will probably havedisposed of most of “them” before the need to offer care arises.

What’s in a name? 5

■ Dear Author, please check the brackets at the placeholder above, thank you very much.■

worldnews/europe/netherlands/10330823/Number-of-Dutch-killed-by-euthanasia-rises-by-13-per-cent.html AccessedMay 2nd 2014.5 See in particular Peter Singer. Practical Ethics, 2nd edition, (Cambridge: Cambridge UniversityPress, 1993), 175–217. John Harris, The Philosphical Case against Euthanasia, in John Keown (ed.).(1995) Euthanasia Examined. Ethical, Clinical and Legal Perspectives, (Cambridge: CambridgeUniversity Press, 1995), 11. Cees M. Hertogh, Marike E. de Boer, Rose-Marie Dröes, Jan A. Eefsting,Would we rather lose our life than lose our self? Lessons from the Dutch debate on euthanasia forpatients with dementia, in The American Journal of Bioethics 7(4), 2007, 48–5.6 See in particular Steven R. Sabat,. The Experience of Alzheimer’s Disease: Life through a TangledVeil,■(Oxford: Blackwell, 2001. Sabat, through a fascinating piece of qualitative research, showsquite clearly that even in advanced dementia, the person does not “disappear.” People are able tocommunicate in quite coherent ways if those listening are in a position to hear properly andinterpret their speech effectively. For a further reflection on the enduring presence of persons withdementia see: Tom Kitwood, Dementia Reconsidered: The Person Comes First, (Buckingham: OpenUniversity Press, 1997).

The problem with personhood

So what exactly is a person? In general the philosophical and “common senseargument” for personhood goes something like this: To be a person is to have acertain set of capacities, that is, to be able to do certain things or to think inparticular ways. The nature of these capacities can be quite arbitrary but arenormally based on certain philosophical foundations or/and views about thenature of what makes a life good and worth living. If someone has these capa-cities, they are entitled to be brought under the moral protection of the particularindividual or group that makes the judgement as to who is or who is not a person.Not to be deemed a person is to fall out with the moral protection of thatcommunity and no longer to be protected in the ways that persons are. So forexample, Princeton ethicist Peter Singer bases his understanding of personhoodon John Locke’s definition of a person as a “thinking intelligent being that hasreason and reflection and can consider itself as itself, the same thinking thing, indifferent times and places7.” For Singer, such things as: “self-awareness, self-control, a sense of the future, a sense of the past, the capacity to relate to others,concern for others, communication, and curiosity8,” all constitute the capacitiesnecessary to be named as a person. Singer uses this list of capacities as ajustification for killing disabled infants and senicide9. I would imagine that MaryWarnock’s criteria for excluding people with dementia from personhood andencouraging suicide and geronticide, at least as she put them across in the articlewe looked at, would run along similar lines, with the addition of economiccontribution and contributions to the social good. Unfortunately my friend’sassessment of Peter would also run along not dissimilar lines.

These models of personhood claim to be based on objective universal theoriesand principles (utilitarianism, autonomy, freedom and individualism being primecandidates), designed to be applied to all people, in any culture or context at anygiven moment in time. Human beings are judged primarily by what they can dorather than why they are. However, when we break such understandings down alittle, it becomes quite clear that there are strong subjectivities at work in themidst of such “objective” theorizing. Why would Warnock begin her reflectionson dementia with her own experience? What difference might it make if her realfears which, apparently are shared by “nearly everyone,” should be that she gets

6 John Swinton

7 Locke, John (2004). An Essay Concerning Humane Understanding, Volume 1MDCXC, Based onthe 2nd Edition, Books 1 and 2 (Kindle Locations 1–2). Public Domain Books. Kindle Edition.8 Peter Singer,Writings On An Ethical Life, (London:Fourth Estate, 2000), 128.9 Peter Singer, Practical Ethics. (Cambridge: Cambridge University Press, 1993 & Second edition2011).

dementia? That is hardly the basis for good ethical decisions. What is it aboutdementia that she finds so threatening? We might find some insight in the criteriaused by Singer in his definition of personhood. Why would curiosity be a centralcriterion for being a person? It may well be central to the life of an academic, butis it central to what we are as persons and ultimately as human beings. Thedanger with models of personhood such as these is that they tend to be projec-tions of the hopes and expectations of the particular author of the model.Inevitably influential definitions of and perspectives on personhood are made upby people who are highly academic and who see the criteria that they name as themost important dimensions of being human. To lose one’s independence andacademic prowess and to become dependent and cognitively disabled is, quiteliterally, construed as a fate worse than death, because it appears to strip a personof everything such theorists think makes life worthwhile.

Again, why would “concern for others” be considered central to personhood?If it is, then why does Singer use his critique primarily to target vulnerable people:the disabled and the elderly? Why not write on the non-personhood of politicians,bankers, or any other public figure who clearly seems not to show concern forothers in the “difficult decisions” they have to make. Why might Warnock notsuggest that we kill all people who are chronically ill and who are draining ourhealth resources? It is not coincidental that disabled people and people withdementia are the targets of philosophers such as these. They stand in starkopposition to the aspects of being human that have come to prominence withinmodernity – autonomy, freedom, choice, individualism, self-advocacy and parti-cipation in the political process – all aspects that such academic theorists dependon to make their living, build their careers and find the things that they valuemost10.

This point becomes clearer when we reflect on how even the staunchestdefenders of personhood have problems when the situation is closer to home. AsPeter Singer put it when challenged as to why he didn’t kill his mother who hadAlzheimer’s disease and instead spent thousands of dollars on good care for her:“I think this has made me see how the issues of someone with these kinds ofproblems are really very difficult,” he said quietly. “Perhaps it is more difficultthan I thought before, because it is different when it’s your mother11.” It’s differentwith your mother? But what is that difference? Well, to begin with your mother is

What’s in a name? 7

10 For further critical discussion on the impact of modernity on conceptualising disability andlegitimising dangerous practices, see Stanley Hauerwas’s essays on disability and theology: JohnSwinton (ed.) Critical Reflections on Stanley Hauerwas’ Essays on Disability: Disabling society,enabling theology (NewYork: Haworth Press, 2005).11 Michael Specter, The Dangerous Philosopher, inThe New Yorker, September 6, 1999, 55.

your mother! She is not a stranger or a non-person; she is kin. And perhaps it ishere, in exploring the nature of human kinship that we can begin to find a moresatisfactory theological response to the experience of dementia and a moreaccurate and faitfhul way of naming people who experience it.

Re-thinking personhood: Humanness, personhoodand the importance of being a creature

In his book: Persons: The Difference Between “Someone” and “Something12,”philosopher Robert Spaemann makes an important observation. Shifting ourfocus away from the idea that personhood is something that can be separatedfrom humanness, he notes that to be a person is to be born into and to participatein the human family. Such participation is not determined by any particularcapacity or set of capacities, but rather by, as he puts it, “genealogical relations ofkinship:”

… members of the species homo sapiens are not merely exemplars of a kind; they arekindred, who stand from the outset in a personal relation to one another.… Belonging to thehuman family cannot depend on empirically demonstrated properties. Either the humanfamily is a community of persons from the word go, or else the very concept of a person as“someone” in his or her own right is unknown or forgotten13.

Within the human community the dual and unshakable premises of birthrightand mutual recognition binds together all of its members. Membership of thehuman community is biological and genealogical and therefore clear and irrevoc-able. It is not dependant on what we can do, but on what we are: human.Spaemann’s point is that being a person is not just a generic instantiation of aparticular kind; being human has built into it the idea of being a person who isunique, irreplaceable, connected and who by definition and through birth partici-pates within the human community14. That being so, the idea of any human beingbecoming a non-person makes no sense:

8 John Swinton

12 Robert Spaemann, Persons: The Difference between ‘Someone’ and ‘Something. (translated byOliver O’Donovan), (Oxford: Oxford University Press: 2006).13 Berndt Wannenwetsch, Angels with clipped wings: the disabled as key to the recognition ofpersonhood, in John Swinton and Brian Brock, Eds, Theology, Disability and the New Genetics:Why Science Needs the Church, (London: T&T Clarke, 2007), 187.14 For a further development of this argument see John Swinton, Dementia: Living in thememories of God, (Grand Rapids: Eerdmans, 2012), Chapter 7.

All human beings are related to one another as descendants of a single woman who, ascurrent scientific theories suggest, lived about 200,000 years ago. “Members of the specieshomo sapiens are not merely exemplars of a kind; they are kindred, who stand from theiroutset in a personal relation to one another. ‘Humanity’, unlike ‘animality’, is more than anabstract concept that identifies a category; it is the name of a concrete community of personsto which one belongs not on the basis of certain precise properties objectively verified, butby a genealogical connexion with the ‘human family15.”

Spaemann helpfully offers us a useful distinction between properties and persons:

Human beings have certain definite properties that license us to call them “persons”; but itis not the properties we call persons, but the human beings who possess the properties16.

This distinction is very important. There may be certain things that are associatedwith personal existence such as the ability to communicate, to relate, to respondand so forth. These things may be considered aspects of persons. However, theyemerge from persons rather than being definitive of persons. A mother maynurture such things as relationality, communication, identity and a firm sense ofself and so forth. However she assumes that she is teaching these things to aperson, not that she has to do in order that her child becomes a person. AsSpaemann puts it:

Recognising a person is not merely a response to the presence of specific personal proper-ties, because these properties only emerge where a child experiences the attention which ispaid to persons17.

In other words, personhood precedes capacities. To be a person has to do withpossessing a way of being in the world rather than a set of capacities. This way ofbeing in the world perceives human existence not as the place where personhoodis produced, but as the medium through which it is expressed and lived. Person-hood is thus seen to be situated within the life of human beings who are alreadypersons. To be a person is to be a member of the human race. Understood in thisway, any loss of capacity in people with dementia may affect the expression ofpersonhood, but it in no way affects the basic fact that all human beings arealways and irrevocably persons. Whereas people like Warnock and Singer seemto have a desire to value particular properties, the perspective developed here

What’s in a name? 9

15 Spaemann, Persons, The Difference between ‘Someone’ and ‘Something (n.12), 256.16 Spaemann, Persons, The Difference between ‘Someone’ and ‘Something, 257.17 Spaemann, Persons, The Difference between ‘Someone’ and ‘Something, 257.

indicates that we value embodied human beings rather than any particularproperties that those persons may have.

If that is the case, then it becomes clear that there is nothing inherent todementia that can destroy or take away personhood. People may lose certaincapacities, as all human beings do, but these capacities do not make the person aperson. Their fundamental kinship as fellow human beings is what makes thempersons. As long as they are a member of the human race (which obviously is anirrevocable status), they remain persons valued and included within that genea-logically interconnected family. This being so, naming someone a person inSpaemann’s sense of the term, is a profoundly powerful Christian practice thatlocates the person with dementia in the world in a quite particular way.

On being a creature

In order to understand the importance of the argument put forward thus far, weneed to take one further step and ask: where is God in all of this? One objection toSpaemann’s position might be that whilst we may all be family, bound togetherby relationships of kinship, it is not immediately obviouswhywe should acknowl-edge these biological bonds in any kind of meaningfully positive moral way. Whywould being kindred inevitably lead us to care for all people no matter what theircondition? Why would we choose or feel obliged to love one another? I wouldsuggest that the theological response to such lines of questioning is that we carebecause we are loved and we love because we are cared for.

In a paper titled ‘What does it mean to be a person? Human relationships andhuman limits.’ RowanWilliams offers a vital perspective on personhood. Drawingfrom the thinking of St. Augustine and the Russian theologian Vladimir Lossky,Williams argues that:

…before anything or anyone is in relation with anything or anyone else, it is in relation toGod. And, said Augustine, the deeper I go into the attempt to understand myself, who andwhat I am, the more I find that I am already grasped, addressed, engaged with. I can neverdig deep enough in myself to find an abstract self that is completely divorced from relation-ship. So, for St Augustine and the Christian tradition, before anything else happens, I am inrelation to a non-worldly, non-historical everlasting attention and love –which is God18.

10 John Swinton

18 Rowan Williams. What does it mean to be a person? Human relationships and human limits,ABC. Religion and Ethics: http://www.abc.net.au/religion/articles/2012/10/08/3606227.htm# Ac-cessed 2ndMay 2014. See also Vladimir Lossky, The Theological Notion of the HumanPerson, in Inthe ImageandLikeness ofGod, (NewYork: StVladimir’s SeminaryPress, 1974), Chapter 6, 111–123.

Spaemann pushes us to recognise the inherent connectedness of the humanspecies and our biological kinship. Williams draws our attention to the primalfact that each human being is loved and in relationship with God before theyreach outwards to be in formal relationship with others. To be human is to be inrelationship in this deep way. This is why all life is inevitably precious andvaluable. It is the reason that we are called to love our neighbour:

if our first relationship is with that energy that made us and sustains us in being – then, ofcourse, my neighbour is also always somebody who is already in a relation with God beforethey are in a relation with me. That means that there is a pronounced limit on my freedom tomake of my neighbour what I choose – because, to put it very bluntly, they don’t belong tome, and their relation to me is not all that is true of them, or even the most important thingthat is true of them. This is true of everything in the world, in a certain sense, which is onereason why there is good Christian ground for being concerned about the environment. Butit is true in a very precise sense of other persons, who see me as I see them, who relate to meand affect me as I relate to and affect them.

The suggestion that we are not free to make of our neighbour what we choose,and that my neighbour does not belong to me is vital. The problem with thinkerssuch as Singer andWarnock is that they seem to assume that they are free to makeof their neighbours what they choose. Put differently, they assume that they havethe right to name something and someone without reference to the Divine respon-sibility to name things properly. The argument that we should kill people withdementia or that they should be encouraged to kill themselves is based on theidea that such actions and practices will bring the maximum happiness (emo-tional, relational, economic and political), to the maximum amount of people19,or that that having dementia is something that “I don’t think I could cope with,”simply assumes that we are free to make of our neighbour who happens to havedementia whatever we choose. If we think she is a waste of time and money, thenshe is a waste of time and money. If we think that we would hate to havedementia, then so should everybody else! Such a position is both self-referentialand ill-informed. However, the suggestion that my neighbour does not belong tome and that her relationship to me is not all that is true of her, or even the mostimportant thing that is true of her opens up a whole new way of naming andunderstanding people with dementia. If we are kin then we are creatures. If weare creatures then we are dependant and loved before we even begin our crea-turely journeys. If God’s prevenient love is the basis for our love of neighbour andthe motivation for our practices of hospitality towards strangers, then our capa-

What’s in a name? 11

19 That is, somemode of consequentialism or preference utilitarianism.

cities are not what make us who we are. We are not our memories or any otherthing that we are able to do. We are who we are as God relates to us. God’s modesof relating are not dependant on what we can do20; they are gifted to us becauseof what we are: creatures and kin.

Because my neighbour does not belong to me; because I am not free to nameher in whatever way I choose, I am therefore not free to do with her whatever Ichoose. Her primary relationship is not with me, but lies beyond my knowledgewithin a mode of primal love that forms the basis for humanness and dignity andvalue. This presence is there before I even move towards my neighbour. As I movetowards my neighbour I move towards God.

I am and have value because I am seen by and engaged with love – ideally the love that weexperience humanly and socially, but beyond and behind that always and unconditionallythe love of God. And the service of others’ rights or dignity is simply the search to echo thispermanent attitude of love, attention, respect, which the creator gives to what is made21.

Conclusion: Practical Theologyand the practice of naming

Do not be afraid or discouraged, for the Lord will personally go ahead of you. He willbe with you; he will neither fail you nor abandon you.

Deuteronomy 31: 8In this paper I have tried to highlight the importance of naming things

properly as a pastoral and theological practice. A few closing theological reflec-tions might help to firm up the point. Practical theology has to do with reflectingcritically on Christian practices as they interrelate with the practices of theworld22. My suggestion is that ensuring the faithfulness of the practice of namingis a vital contribution that practical theology can bring to the process of under-standing ageing and caring for elderly people. To learn to name things properly isto learn how to love them well. To learn how to love one another well is to learnnot to fear. “Perfect love drives out fear.23”

12 John Swinton

20 For a further development of these points see John Swinton, Dementia: Living in the memoriesof God, (Grand Rapids: Eerdmans, 2012).21 Williams,What does it mean? (n. 18).22 John Swinton and Harriet Mowat, Practical Theology and Qualitative Research, (London: SCMPress, 2006), 6.23 1 John 4: 18.

One of the striking things about the experience of dementia is the ways inwhich it invokes fear in people. Such fear is manifest clearly in Warnock’sresponse, but it is also plain to see in my friend’s response to Peter’s dementia.People fear dementia more than they fear cancer24. But what exactly is it that wefear when we contemplate dementia? Is it a fear that we will somehow loseourselves; that all of the things – memories, thoughts, histories, narrative – thatmade us who we think we are will be gone, leaving us in a boundless sea ofmeaningless experiences within which we can make little sense; encounteringourselves as condemned to a life timeless emptiness. If that was in fact the case,then maybe we would have things to fear. But that cannot be our fear when thewriter to the Hebrews is so clear about Jesus’ promise: “I will never leave you norforsake you” (Hebrews 13:5–6), and Matthew assures us that “behold, I am withyou always, to the end of the age”(Matthew 28: 20). If our fear of dementia has todo with abandonment, loneliness and loss of identity, then we simply need toremain true to the scriptures to be certain that that is not the case. Wherever wego, in the depths of brokenness or the heights of joy, Jesus is with us.

If I go up to heaven, you are there;if I go down to the grave, you are there.If I ride the wings of the morning,if I dwell by the farthest oceans,even there your hand will guide me,and your strength will support me.

(Psalm 139)

When we forget everything, Jesus is there. Why? Because he has always beenthere.

Naming people with dementia as human persons who are loved by God longbefore people can choose or not choose to be with them provides a powerfulfoundation for pastoral action and a deep reframe of some of the key assumptionsthat lie behind the philosophical constructions of personhood. Personal life is life

What’s in a name? 13

24 A recent British YouGov poll of 2000 people in the United Kingdom carried out on behalf ofAlzheimer’s research UK, indicated that: 31% of respondents feared dementia most, with 27%fearing cancer most and 18% fearing death most. Dementia fears extend to all ages. Over half(52%) of UK adults aged 30–50 fear dementia for their parents, compared to 42% fearing cancerand 33% heart attack. Among retirees, 34% worry about health the most, and more than otherissues, such as money (33%). When asked specifically which conditions they worry about, 52%worry about dementia, 33% worry about cancer and 30% worry about stroke. Alzheimer’sResearch UK: Defeating Dementia, “Alzheimer’s Research UK launches as public dementiafears spiral,” http://www.alzheimersresearchuk.org/news-detail/10183/Alzheimers-Research-UK-launch/ Accessed 2/5/14

in communion: communion with our brothers and sisters within the human race,underpinned by a deep, prevenient and unbreakable communion with God. Sucha mode of communion holds us in our identity and in our personhood irrespectiveof our abilities or inabilities at any given moment in our lives. As we enter intocommunion with the person before us, we discover that God is already there andindeed has always been there. We may struggle with our relationships with theperson before us, but we do not struggle alone. In faith, hope and love we can beassured that who and what they are is not determined by us, our feelings or ourconfused desires, but by a powerful love that has been with them since theyentered the planet and which will remain with them for all time. People livingwith dementia are not worthless or abandoned even if our temptation is to feelthat way and to abandon them. As we recall and practice God’s love for them inthe knowledge of God’s love for us, we are drawn to a place of gentleness,patience, kindness and love; a place where the suggestion that I should kill themor encourage them to kill themselves makes no sense. To be a person is to be ahuman being. To be a human being is to be loved. To be loved is to know forcertain that “neither death nor life, neither angels nor demons, neither the presentnor the future, nor any powers, neither height nor depth, nor anything else in allcreation, [not even dementia], will be able to separate us from the love of God thatis in Christ Jesus our Lord.’ (Romans 8:38)

14 John Swinton