OBM Geriatrics

(ISSN 2638-1311)

OBM Geriatrics is an Open Access journal published quarterly online by LIDSEN Publishing Inc. The journal takes the premise that innovative approaches – including gene therapy, cell therapy, and epigenetic modulation – will result in clinical interventions that alter the fundamental pathology and the clinical course of age-related human diseases. We will give strong preference to papers that emphasize an alteration (or a potential alteration) in the fundamental disease course of Alzheimer’s disease, vascular aging diseases, osteoarthritis, osteoporosis, skin aging, immune senescence, and other age-related diseases.

Geriatric medicine is now entering a unique point in history, where the focus will no longer be on palliative, ameliorative, or social aspects of care for age-related disease, but will be capable of stopping, preventing, and reversing major disease constellations that have heretofore been entirely resistant to interventions based on “small molecular” pharmacological approaches. With the changing emphasis from genetic to epigenetic understandings of pathology (including telomere biology), with the use of gene delivery systems (including viral delivery systems), and with the use of cell-based therapies (including stem cell therapies), a fatalistic view of age-related disease is no longer a reasonable clinical default nor an appropriate clinical research paradigm.

Precedence will be given to papers describing fundamental interventions, including interventions that affect cell senescence, patterns of gene expression, telomere biology, stem cell biology, and other innovative, 21st century interventions, especially if the focus is on clinical applications, ongoing clinical trials, or animal trials preparatory to phase 1 human clinical trials.

Papers must be clear and concise, but detailed data is strongly encouraged. The journal publishes research articles, reviews, communications and technical notes. There is no restriction on the length of the papers and we encourage scientists to publish their results in as much detail as possible.

Free Publication in 2019
Current Issue: 2019  Archive: 2018 2017
Open Access Review
The Value Given and Presupposed in Person-Centred Dementia Care

Stephen Ames 1, 2, *

1. School of Historical and Philosophical Studies, The University of Melbourne, Melbourne, Victoria, Australia

2. Centre for Research in Religion and Social Policy the University of Divinity, Melbourne, Victoria, Australia

Correspondence: Stephen Ames

Academic Editor:  James S. Powers

Special Issue: Treatment of Dementia

Received: April 08, 2019 | Accepted: July 02, 2019 | Published: August 13, 2019

OBM Geriatrics 2019, Volume 3, Issue 3, doi:10.21926/obm.geriatr.1903068

Recommended citation: Ames S. The Value Given and Presupposed in Person-Centred Dementia Care. OBM Geriatrics 2019;3(3):17; doi:10.21926/obm.geriatr.1903068.

© 2019 by the authors. This is an open access article distributed under the conditions of the Creative Commons by Attribution License, which permits unrestricted use, distribution, and reproduction in any medium or format, provided the original work is correctly cited.

Abstract

Thirty years ago, Tom Kitwood proposed a change in the care of people with dementia, from ‘warehousing’ to ‘person-centred care’. The change had noticeable benefits for those with dementia. Kitwood set out his presuppositions for this change. For example, Kitwood understood personhood as the standing or status bestowed on one human being by others in the context of relationships and social being and held that respect for the absolute value of each person is a key theme in Western ethical discourse. He was clear this respect needs no theological grounding but is the only assumption on which our lives as social beings make sense. This paper discusses various contradictions within Kitwood’s presuppositions and offers a diagnosis. My alternative proposal is to keep the theme of the absolute or unconditional value of human persons but take this as an objective fact about each person, whether always recognised or not. I argue that this proposal is intelligible (contra J. Mackie) and that there is evidence in support (a critical discussion of S. Darwall, who also rejects any theological interpretation of his second personal standpoint). The paper concludes with a question about the power at work in person-centred care and considers an example from Peter Singer.

Keywords

Dementia; personhood; person-centred care; value; power; theology

1. Introduction

According to the World Health Organisation (WHO), “Dementia is a term that groups a range of neurodegenerative illnesses of which Alzheimer’s is the most well-known and prevalent variety. Dementia is characterised by the degradation of cognitive faculties, which result in a progressive loss of functions and autonomy (WHO 2004)” [1].

The portent of a looming dementia ‘epidemic’ surrounds any recent discussion about dementia [2]. According to Dementia Australia, “In 2018, there is an estimated 436, 366 Australians living with dementia. Without a medical breakthrough, the number of people with dementia is expected to increase to 589,807 by 2028 and 1,076,129 by 2058" [3].

The public perception of dementia is negative, partly due to ageism, the construction of ageing as pathology, in turn due to viewing ageing from the stand point of the two factors leading to increasing life expectancy: the economy and health sciences. The negative perception of dementia is reinforced by extremely negative images of dementia dominant in the media. This includes the idea of the immediate incapacity of the person diagnosed with dementia. A common response to seeing people with dementia losing all capacities, including not recognising loved ones, is: ‘If I ever get like that, take me out and shoot me!’.

There has been “an old culture of care for people with dementia which: 1) reduced dementia to a strictly biomedical phenomenon; 2) was task driven; 3) relied on control techniques including chemical and physical restraints, warehousing and unnecessary medication; and 4) devalued the agency and individuality of persons with dementia.” [4]. It is rightly called ‘warehousing’.

The old culture of care is called ‘old’ in the light of the shift to a new culture of person-centred care that has been introduced over the last 30years. There is debate over the nature of person-centred care. The contrast to care under the biomedical model remains crucial, but for some ‘person-centred’ won’t do because it is the person in the context of their relationships that is at the centre. Not all agree on the term ‘person’ or indeed have any specially formulated notion of ‘person’. Person-centred care may refer to the personal character of the caring being offered, undergirded by humanistic principles. A variety of descriptions are synonymous with person-centred care - patient-centeredness, authentic consciousness, skilled companionship, senses framework, and positive person work [5]. This variety of approaches have in common a privileging of the second-person perspective for their care of people with dementia in contrast to the objectifying third-person perspective dominant in ‘warehousing’.

The ‘old’ so-called is still quite prevalent because the ‘new’ has not spread everywhere. The shift is incomplete. The shift has been supported by several factors.

(i) The realisation that the people with dementia present clinically in ways that are due to the neuropathology and their psycho-social environment [6,7,8,9,10].

(ii) Even people rated with mild to severe dementia retain social and cognitive skills not identified by the standard tests for dementia [11,12].

(iii) The resulting improved quality of life for people with dementia [13,14,15,16,17].

(iv) The introduction (see below) of an understanding of human persons drawn, from ethics, philosophy and social psychology, which calls for placing the person with dementia at the centre of attention.

These differences between the ‘old’ and ‘new’ cultures of care show up in the different treatment practices and in the effects they have on those being treated, with considerable improvement for the quality of life from the new culture of care for people with dementia.

In many places the old culture continues. In personal communication with Prof. Andrew Sixsmith (Simon Fraser University, Vancouver) I asked how care of people with dementia is going in Vancouver. The answer was that the buildings and facilities are in good order but regretfully this is not everywhere matched by the quality of care. I asked if ‘warehousing’ was continuing. The answer was that the term ‘warehousing’ isn’t used anymore. When I asked what term is used now, the answer was ‘archiving’. The quality of domiciliary care received by people with dementia is also a concern in the UK, both abuse of older people and carer burn out [18].

2. The Shift from ‘Warehousing’ to ‘Person-Centred Care’

In a nutshell the shift from ‘old’ to ‘new’ culture has been represented as follows:

From, the person with DEMENTIA → the PERSON with dementia [19].

The practice of person-centred care makes persons with dementia the centre of attention, as persons who are sensitive, intentional, relational and historical subjects, by focusing on the capacities they have retained and by taking account of the capacities they have lost.

This change of approach brings about a shift in the course of the symptoms over time towards stabilising the dementia and even the possibility of ‘rementia’ – that is the regaining of some capacities [20,21].  While there is still no detailed agreement on the practices that count as person-centred care. There is general agreement on placing the quality of the carers’ relationships with the person with dementia at the centre of attention and especially the quality of the communications. The importance of the communication between carer and the person with dementia is shown in the work of Kitwood and the continuing follow up [22,23,24,25].

Historically, the most important factor in bringing about these benefits is the quality of the interpersonal relationships with the person who has dementia. These relationships are described in various metaphors, as ‘replenishing’ or ‘holding’ the personhood of the one with dementia.

Typically, people with dementia lose their web of social relationships, often including family members. It is particularly difficult if the person with dementia doesn’t recognise them. Recognition is in turn withheld. They stop coming.

The relationships between carers and those for whom they care is very demanding on the carers as the disease progresses. True, they are paid for their care but the person-centred care for those with dementia is undoubtedly based on the recognition and respect for these persons as persons; that is the recognition of their value as persons, a value that is not undermined through their loss of some capacities due to the dementia nor by their often difficult behaviour in which the manifestation of personhood is still discernible, nor by their further deterioration in the latter stages of dementia.

3. The Motivation of Person-Centred Care

The late Tom Kitwood, one of the leaders of person-centred care drew on “three central ideas: respect for persons, (a Kantian theme [26]) moral solidarity (from the work of Stephen Post [27]) and I-Thou relating (From Martin Buber and social psychology” [28]), to which may be added “avoiding Descartes’ error” [29]. Kitwood defines personhood: “It is the standing or status that is bestowed on one human being by others in the context of relationships and social being.” “Both the according of personhood and the failure to do so have consequences that are empirically testable.” [30]. Kitwood explicitly affirms the absolute value of each person.

In the main ethical discourses of western philosophy one primary theme has been the idea that each person has absolute value. We thus have an obligation to treat each other with deep respect; as ends and never as means towards some other end. The principle of respect for others requires, it was argued, no theological justification; it is the only assumption on which our life as social beings makes sense [31].

There are at least two problems here for Kitwood’s view. Firstly, dementia is often accompanied by the unravelling of ordinary social life and so undermines the ground of this assumption. In the extreme, when faced with not being recognised by their demented love one, people often say, ‘Mom’s gone’ or ‘this is not the John I married’. Inevitably it leads to the question Kitwood asks, “[w]ho is to be viewed and treated as a person? What are the grounds for inclusion and exclusion, since ‘person’ is clearly not a mere synonym for ‘human being’?” [32]. Secondly, there is a contradiction in the idea of a person having absolute value but personhood being a status or standing attributed by others, which can therefore be withheld.

The failing of the assumption about life as social beings, and this contradiction along with another identified below, means those with dementia are at risk of effectively being excluded from being regarded as persons. They are at risk of no longer being treated as having absolute value. This leads to the old culture of care, with rapid decline as a consequence of the toxic psycho-social milieu, which decline is then interpreted as an effect solely of the neuropathology. Kitwood found that the decline in the person with dementia was faster than the neurological decline. More recently we find euthanasia being considered as a treatment option for people with dementia on the grounds that their life is over [33]. Inevitably this leads to the question, “what is the value of a person with dementia?” The answer cannot avoid reflecting on the related question, “what is the value of a person without dementia?”

A different account of the human person and the dignity and value of the human person seem to be implied by the very different practice of person-centred care with its measurable benefits compared to ‘warehousing’. There must be more to Kitwood’s understanding of the human person than so far mentioned, which sustained the practice of person-centred care.

Kitwood upholds inclusion and rejects exclusion by drawing on the work of Stephen Post [34]. He proposes the principle of moral solidarity in recognition of “the essential unity of all people.” [35]. As Kitwood says we are all in the same boat and there is no empirically determined point at which it is justifiable to throw some people overboard. Here is another internal contradiction with the earlier preceding quote from Kitwood. If ‘person’ is not a synonym for ‘human being’ then I would not expect the ‘all people’ move towards ontology – whereby we are all in the same boat in view of what we human beings are. This ‘ontological’ note marks a shift from the idea of being a person as something ‘attributed’ and from his idea that the term ‘person’ has nothing to do with being a human being.

We also see this ontological note in Kitwood’s [36] appeal to Martin Buber’s work I and Thou [37] in which he distinguishes between I-It and I-Thou modes of relating. Kitwood reiterates Buber’s point: the latter can only be spoken with one’s whole being, the former can never be spoken with one’s whole being [38]. In the latter mode of relating “subjectivity and inter subjectivity are fully recognised.” [39]. See how the understanding of personhood is again moving towards ‘being’, a relational ontology, where to be is to be in relation.

Kitwood’s philosophical considerations inform the practice of the person-centred care he promoted. His approach identifies five psychological needs of people with dementia: comfort, attachment, inclusion, occupation, and identity. From Kitwood’s Dementia Care Mapping he also identified ten indicators of ‘positive person work’. Among these are four important conversational interactions: recognition, negotiations, facilitation and validation [4,40,41]. These contrast to 17 behaviours he documented that contributed to the malignant social psychology surrounding people living in the ‘old’ culture of care [42]. On the other hand, the implementation of a person-centred approach with people with dementia led to noticeable improvements for these individuals [43,44].

In the practice of person-centred care personhood is not a status attributed, it is recognised; unconditional worth is not attributed, it is recognised; and so, dignity is not attributed it is recognised and respected, which is shown in the specific practices of person-centred care. Let’s be clear that recognition is recognition of what is taken to be the case and here what is the case is that being a person is to do with being a human being, and being a person is only possible in relation to other human beings. This may be compared to Spaeman, “There is no graduated transition from a ‘something’ to a ‘someone’. It is only because we treat human beings from the start as someone, not as something, that the majority of human beings actually develop the properties that then justify the way we treated them.” [45]. Person-centred care appears to work the same way for people with dementia. My diagnosis of the incoherence is that it is due to a lack of an ontology of the human person and the grounds of the value of the human person, adequate to the practice of person-centred care.

Assuming this is a correct account of the incoherence in Kitwood’s rationale for the practice of person-centred care, the question is what account of the ontology and value of a person might be adequate to the practice of person-centred care, and under further examination, whether the alternative is intelligible and whether there is any independent evidence in support of it.

We shall soon be dealing with a choice of world-view and there I have two criteria: philosophical coherence and empirical adequacy. I believe we need to press the discussion this far because I am seeking an understanding of the impact of person-centred care and this will be needed to publicly engage the very different and extremely negative views of dementia that are in circulation.

4. An Alternative to Kitwood’s View of the Value of the Human Person

The implicit ‘ontological note’ in Kitwood’s thinking is different from understanding ‘personhood’ as a status attributed to human beings exercising certain functions. The several difficulties identified amount to a significant philosophical incoherence in Kitwood’s account of the human person. The practice of person-centred care has positive benefits for the person with dementia. This at least supports the assumptions which the practice embodies, except the articulation of the assumptions is philosophically incoherent. The practice treats those with dementia as if they were persons in virtue of being human beings and as if they had ‘absolute value’ as persons. If we were to hold a realist not just a pragmatic interpretation of the ‘as if’ this would render Kitwood’s assumptions coherent. Consider the following position:

 > affirm the practice of person-centred care, with of course the many internal debates and varieties of practice;

 > take ‘persons’ to refer to what human beings are, a matter of ‘ontology’ not just functionality, (of course with more to be said);

 > reject the idea of ‘person’ as only a status bestowed or attributed by others;

 > affirm the moral view of the absolute value of a human person as an objective fact about the person, whether recognised or not.

This alternative position upholds the practice of person-centred care with its benefits and removes the previous incoherence. If sustainable it would strengthen person-centred care against the negative judgments about people with dementia. However, it faces at least two new challenges. Is this alternative intelligible and is there any evidence for it?

I believe John Mackie would have thought this alleged ‘fact’ qualifies for what he some time ago described as a ‘queer’ fact [46], viz., objective ethical values. Talk of ‘unconditional value’ would be an unintelligible claim. Mackie’s judgment depends on a fully naturalistic world-view and the most powerful contemporary version of scientific naturalism is physicalism [47,48]. This naturalism has an epistemic and an ontological thesis. The first says that the only way to know about the world is by using the methods and epistemic standards of the natural sciences, especially physics. The second says that all there is, is what physics says there is or complex configurations of the same. That is all there is.

I have serious reservations [49,50] about this scientific naturalism which is a philosophy that I distinguish from the natural sciences. Here I just note one critique: it cannot properly account for one of the most striking phenomena on planet earth. I refer to the phenomenon of human inquiry in all its forms but especially scientific inquiry. I argue that human inquiry has a normative dimension that is both evaluative and regulative. It is evaluative in that it identifies good arguments and conclusions, good experiments and results. It is regulative in that with regard to conducting inquiry it says we ought to take on board those good arguments and good experiments that are relevant to our inquiry. A naturalistic ontology logically cannot give an acceptable account of this regulative ‘ought’. This ontology is philosophically incoherent for it cannot give an account of how it is known, nor how the knowledge is gained by the natural sciences, on which this naturalism is based. This is one of the limits on the naturalistic approach to explaining human inquiry. Those accounts of the human person formed under the aegis of this naturalism will not meet my first criterion of philosophical coherence for assessing world-views.

I think this naturalism is in the background of the ‘old culture of care’, which took the scientific approach to health and sickness as having authority to define the real and so having authority to say what is best for the person with dementia. This was and is a preference for viewing the person with dementia in functional terms. That person is inevitably vulnerable to disappearing due to the toxic psycho-sociological environment of ‘warehousing’ and the expanding neuropathology. Person-centred care promoted by Kitwood and followers denies the scientific approach to health and sickness as having such comprehensive authority to define the reality of what is best for persons with dementia. Of course, the practice of person-centred dementia care still draws on all the benefits of a scientific approach to health and sickness.

It is worth observing how the discussion of the human person quickly opens up to questions of one’s world-view or metaphysics. An alternative to scientific naturalism may be pursued. A principled starting point is needed, and this is provided by focusing on what resists being completely naturalised, viz. human inquiry. In my thinking an alternative to the pervasive naturalism includes an argument to God from various aspects of human inquiry, which can be found in the works of B. Lonergan, K. Ward, R. Spitzer and R. Scott Smith [51,52,53,54]. This is not the place to pursue that argument but is worth noting in view of what follows.

A related point of departure for an alternative to naturalism comes from a further turn in the discussion of the intelligibility of the claim about the unconditional worth of human being, but now freed from the incoherence of scientific naturalism. If we take this claim as implicit in the practice of person-centred care, and take it as a clue to reality, to do with what human beings are, as distinct from what they attribute to each other, then our world-view (should we have one [55]) cannot be that everything is conditioned by everything else. For then there could not be anything that is unconditional. So, our world-view would must include something that is beyond all the conditioning, something transcendent, that is the ontological ground of this unconditional worth of the human person and so is itself of unconditional worth. Furthermore, according to this reflection, even if I do not recognise it, I am somehow in touch with that transcendent ‘something’ at the very point where sometimes I recognise the unconditional worth of persons is utterly shredded by the violence visited on them, as if they had no such worth, and when I sometimes appreciate that the unconditional worth of human beings is fittingly recognised by acts of compassion, justice and love towards persons. Without further discussion here, I say that this transcendent ’something’ is traditionally called ‘God’. This retrieves Kitwood’s claim that talk of ‘persons’ comes to the fore in three contexts: ethics, social psychology and transcendence. While acknowledging the latter Kitwood does not given it any development nor does it seem important overall in Kitwood’s work [56]. As noted above he explicitly rejects the need for any theological justification for the idea that each person has absolute value. In his view the idea’s justification is that it is “the only assumption on which our life as social beings make sense.” But, as noted, how can the assumption hold when the social life of the person with dementia unravels and cannot be taken for granted?

I have gone a little way toward explaining the intelligibility of the alternative account of the unconditional value of each person. Let us consider what evidence there might be in support.

5. Evidence for the Alternative View of Human Worth

The practice of person-centred care, based on this unconditional value of the person with dementia, helps retrieve something of the reality of personal and social life under the extremely challenging conditions of the person with dementia. The positive impact of person-centred care on people with dementia, including evidence of rementia, is one kind of evidence for the view I am proposing.

For another kind of evidence, I refer to Stephen Darwall’s Second Person Standpoint [57,58]. This is the standpoint we take up when we explicitly or implicitly address claims or demands, whether to others or to ourselves. If you claim the right to command a man who has stepped on your foot you presuppose an authority to make this demand and to hold him accountable. You offer that person a “second-personal” [59,60] reason to remove his foot from yours, namely that he owes it to you. Darwall’s point is that the authority, the claim or demand, the accountability and the second-personal reason are all mutually involving concepts. Likewise, moral responsibility and moral obligation, human dignity and the very concept of moral agent or person are also irreducibly second-personal. “Each involves conceptual connections to the second-personal conceptual circle just identified.” [61]. Darwall argues that these ideas only make sense when we assume that each moral agent has this authority as an equal or reciprocal member of the moral community [62,63].

     Darwall asks us to consider a moral community in which these assumptions hold between members equally, reciprocally. I accept this way of envisaging a moral community while acknowledging there are communities large and small where these assumptions do not hold; for example: families where domestic violence prevails; refugees Australia detains on Manus Island in Papua New Guinea and Nauru; First Nations people who are utterly sure they are not treated as equal or reciprocal members of the wider moral community of Australia; the survivors of sexual abuse who also for a long time were not believed; slavery in its many forms.

Without allowing these disorders to undermine a positive reception of Darwall’s work, I would like to examine whether in an interesting sense it is incomplete. I think it is surely possible to note the presumed authority in you giving me a second-personal reason to act, (and even if I accept it), yet still to wonder on what that authority it is based. To quote D. Levin,

.. if Darwall and many others too, present and accept second personal reasons and are caught up in all that comes in tow, what has that to do with me? Why can’t I … just opt out of the whole business? What would be the mistake in that? [64].

Darwall uses Feinberg’s idea [65] of a place to “stand” to claim or demand that to which one has the right. “It includes a second-personal authority to resist, complain, remonstrate, and perhaps use coercive measure of other kinds … .” [66]. Such a place to stand seems to point to the very thing I am asking about.

What is that place to ‘stand’? Darwall makes clear “there is no way into this conceptual circle from the outside. No proposition that does not already involve second-personal concepts can entail any that does.” [67]. Thus, the place to ‘stand’ must either be within the conceptual circle or be something that can properly support the whole cycle of self-involving ideas to which we mutually gain entrée, for example by giving or accepting second-personal reasons to act. This place to ‘stand’ cannot simply be the ‘conceptual circle’ itself because, even if I accept Darwall speaking of the ‘conceptual circle’, I still may wonder what the basis is for the presupposed authority in making a second-personal claim.

My thinking has been independently voiced by T.M. Brewer [68] in his 2009 paper, ‘Morality and the Second Person’. Brewer invites us to,

suppose someone to be bitten by remorse for murdering a fellow human being. Does this consist in a full reckoning with the fact that the victim had the authority to demand not to be killed, and that others have the authority to blame one for having done so? It seems not. It seems that there is something - one might call it the irreplaceable value of the victim – which lies beneath these authority relations and must be appreciated in full remorse [69].

Brewer approaches this point from another angle by

imagining someone who makes clear that he does not demand observance of even the most minimal moral limitations on our treatment of him. He makes it known that it is perfectly acceptable to him if we speak to him in humiliating ways, subject him to pain, even torture him. The morally indicated response to such a person is to try to restore to him a lively sense of his own value. Success in this endeavour would certainly restore his readiness to demand not to be humiliated or tortured, but the obligation not to humiliate or torture him seems to remain constant whether or not he is ready to demand its observance. Nor does it seem necessary to speak here of legitimate second-person demands in order to make clear how the obligation not to humiliate or torture a person is owed to that person. Such obligations can persuasively be said to be owed to those people whose lives would be disfigured if the obligations were violated, since it is their particular irreplaceable value that the violations would ignore [70].

The irreplaceable value of each person would presuppose the irreplaceably distinct particularity of each person, as a person – it would not be adequate to say, ‘as an individual’. While more needs to be said on the following point, I suggest this ‘irreplaceable value’ is akin to my earlier talk of the ‘unconditional value’ of each human being. I further suggest that such value is the basis for one to claim and demand recognition and respect as owed. It is the basis for one’s authority to make and accept second-personal claims. It marks out Feinberg’s place to ‘stand’. It allows us to say to Levin that the mistake would be in not recognising one’s own and others distinctively irreplaceable value. It is Darwall’s presupposition of ‘a place to stand’ made transparent to the deeper realities in which it ‘stands’. From the above discussion I suggest the deeper realities are the unconditional worth of each human being grounded in the transcendent reality of God, incognito [71].

As an apparent obstacle to this combining of theology and Darwall’s work I note his rejection of the theological voluntarist interpretation of the second personal standpoint.

It follows that God can only intelligibly hold someone to be accountable to him if he takes that person to have second–personal competence and, by virtue of that, an authority to blame, and so address moral demands, himself. If this is so there is a resulting tension within theological voluntarism or any view that understands moral authority in fundamentally hierarchical terms, which can be fully resolved only by maintaining that second person competence is sufficient for the authority to address moral demands and hold people account-table for complying with them [72].

 From the above discussion I am saying that second-personal competence with the whole cycle of self-involving ideas is not ‘sufficient’ as a basis for the authority to address moral demands and hold people accountable for complying with them. As I have argued the whole cycle of self-involving ideas ultimately has its ‘standing’ in the transcendent reality of God. But this is not theological voluntarism. It does not (yet) refer to God issuing commands. On this view the transcendent reality is typically incognito, the hidden ground of the unconditional worth of each person, with each person having to awaken to the hidden reality of God in their lives – if at all. Is God so understood without authority? Not if we recall that the words ‘authority’ and ‘author’ have the same root and recall the prayer addressing God as the author and giver of life. This would be appropriate to the understanding of God introduced above.  Of course, there is more to say about divine authority.

These theological comments are very preliminary and can and should be extended to engage issues that are of concern to Darwall. For example, my view upholds the mutuality of the moral community since ultimately all share the same place to ‘stand’, which recalls the Biblical theme of humankind being created in the image of God. But perhaps more deeply for Darwall there is a question about the authority of God to give any commands to human beings. Does a command from God assume that people have the capacity to hold themselves to account? Yes, even Psalm 32:9 urges humankind “to be not like horse and mule without understanding, whose temper must be curbed by bit and bride.” The second of two great commandments upholds the mutuality of the double use of ‘neighbour’ in Luke 10:29,36. But why the first commandment? It is essential to challenging our turning any individual or institution into an idol, a surrogate for God. We become like what we worship (Psalm 115) so that our humanity is degraded by the worship of idols, whereas worship of the living God commands and so authorises us to have access to all our heart, all our soul, all our mind and all our strength and its outworking in our lives - all other so-called authorities notwithstanding.

This discussion suggests the idea of the unconditional worth of human beings is important for a fuller account of Darwall’s very successful ‘second person stand point’ as a piece of moral philosophy, which success in turn provides evidence for this idea, implicated in the practice of person-centre care for those suffering dementias. Those persons are thereby ‘re-membered’ into the moral community, even in the later stages of dementia when they do not retain second-personal competence. Kitwood still invokes Buber’s I-Thou relating even in these later stages shown in the occurrence of very surprising ‘moments of lucidity’, when the person with dementia reappears addressing their loved one(s) lucidly, aptly, poignantly before receding.

6. The Power of Such Interpersonal Relationships

Kitwood makes the point that attributing or withholding the status of personhood has measurable empirical effects. Since making or withholding the attribution produces effects, it is surely an act of power. But what is this power, on what is it enacted, and how are these effects produced? I would say they are produced on and in the person. This strongly suggests that personhood is more than an attribution.

One example of the power of second person perspective comes from Peter Singer. According to Singer, to be a person is to have the capacity for “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 curiosity.” [73]. Furthermore, “Only a person can want to go on living, or have plans for a future, because only a person can understand the possibility of future existence for herself or himself.” [74].

This is a functionalist understanding of the human person which is much indebted to the 17th c. philosopher John Locke. If the human person is defined in functional terms (e.g. reason, language, autonomy) then either at the beginning of life when this functionality is not yet acquired or at the end of life when this functionality has been lost, the individual human being is a non-person.

Is this an adequate account of the human person? An insight into an answer is given by Peter Singer. When his mother was diagnosed with Alzheimer’s disease Peter Singer hired carers to look after her. His explanation of his actions against his well know advocacy of active euthanasia for the people with severe intellectual difficulties, was “It’s different when it’s your mother.” [75]. One’s initial inclination is to say, “Fair enough. After all it is his mother. I’d feel the same way.” But immediately the question arises: when Peter Singer says, “it’s different when it’s your mother”, what is the difference?’

It is the difference between his generalised theorising and first-hand experience to do with the particular reality of these two persons and their relationship and their history. Through this experience a new reality had come to light that was not countenanced in the theory. A new reality that is powerful enough to overturn acting on the theory. If this was something peculiar to Singer, it would have no relevance to a general theory of the human person. But this point can be generalised. A person with Alzheimer’s may not be Singer’s mother but that person will be someone’s mother, brother, sister, father, friend, lover, work mate. Like Singer, anyone might well refuse to bring about the death of a loved one with Alzheimer’s and be recognised as having good reason for the refusal. As noted the point can be generalised and thus to be properly taken into account in his theory of the human person.

It is no rebuttal of this point to note that sometimes people do bring about the death of their long suffering loved one, in whose sufferings they have shared. Doing so has involved an enormous struggle within themselves against the ‘new realities’, which moved Singer to pay for the care of his mother.

Singer’s account of the human person fails to meet my criterion of empirical adequacy. In particular it takes no account of what I have called the ‘particular realities of these two persons, their relationship and their history’, which showed up for Singer who was faced with acting on his theory of the human person, when his mother was diagnosed with Alzheimer’s.

Another entrée into considering the power of the second person perspective comes from the contrast between the ‘old culture’ of care and the ‘new culture’ of person-centred care [76]. Kitwood reports the response from an agency wanting to promote awareness of Alzheimer’s condition. The agency rejected the requested photographs from the day care centre because the images of the people were not the disturbed images that were standardly expected. Rather the images showed people “who were continuing to live in the world of persons, and not being downgraded into the carriers of an organic brain disease.” [77]. As a contrast, Kitwood had noted the common experience that following diagnosis of dementia, people admitted to a nursing home rapidly declined, more rapidly than the declining neuropathology [78]. Already noted is his documentation of 17 distinct behaviours of carers contributing to a malignant social psychology in the ‘old’ culture of care (ref. [42]) and the observed improvements following this approach to caring for people with dementia (ref. [43,44]). Also noted was the systematic research Sixsmith (1993) on groups of people with dementia (including some with severe dementia) showing the benefits of person-centred care; e.g. stabilising the condition and even the regaining of some capacities. This research included reports on positive changes in psychological and neurological (chemical) variables: “the authors hypothesized that the psycho social environment affected neuronal growth.” [79]. Over time and along the lines of person-centred care, changing the psycho-social environment of people with dementia has observable and measurable effects on them.

This leads me to make two points by way of conclusion. The first is what I call the power of the second personal perspective. What is this power? I mean the power of persons relating well together. This is important for most people and affects us deeply, on many levels of our living, which we discover in one way through the joy and pain of such relating and in another through the multiple ramifications of missing out on or losing such relationships. It is manifestly important to persons with dementia, which the ‘old’ culture completely misses. To correct this blind-spot Kitwood calls on Buber’s understanding of I-Thou relationships in contrast to I-It relating. The former involves one’s whole being, whereas the latter does not, however important such relating is for some purposes. The former is what I was pointing to in speaking about the ‘new reality’ of the particular personal relationship between Peter Singer and his mother, which was in the blind-spot of his general theory of persons. The ‘power’ in personal relationships is an old theme approached in a new way to do with the power of person-centred care for people with dementia. Here I just mention that I am exploring the idea that any account of this power should include the effect of the unconditional worth of the person with dementia being recognised and affectively communicated.

The second point concerns the need to understand how these bodily effects come from person to person relating. How do persons bring about bodily effects? Kitwood’s answer rejects Cartesian dualism of two fundamentally different substances, mind and matter and affirms the single complex reality in which “any psychological event or state is also a brain event or state carried by a brain whose structure has been determined by both developmental and pathological factors.” [80]. Kitwood [81] supports the last point by citing Damasio “the brain is a plastic organ” – that the brain is “repeatedly pliable and modifiable by continued experience.” [82]. I take this to include persons with dementia experiencing the well attuned personal relating of the persons caring for them, which affects them as persons, and has psychological effects eventually leading to brain changes that benefit them. I am not happy to only speak as Kitwood does of the psychological event being also a brain event. This is in part because the weakness in his otherwise very helpful work is its deficient ontology of the human person. I don’t want to lose the personal in an inadequate naturalism that is philosophically unable to account for human inquiry. Also, I don’t want to lose the personal in the psychological, without denying the many benefits of the latter. Kitwood’s reference to psychology picks out the language of the third person perspective on the human psyche whereas his invocation of Buber means the language of persons and I-Thou relating is in a different register. Here, communication is with one’s “whole being” which is denoted by the term ‘person’ but not the term ‘psychological’. The former carries the ontological ‘note’ that cannot be reduced to the psychological.

It seems we must think of the personal inter-face as mediating these various effects. There is much research on brain plasticity which is informative. What I am looking for is brain plasticity research that illuminates how a person’s experience of other persons’ person-centred care positively affects their brain. This necessarily involves the intersection of neuroscience, psychology and the various philosophical and theological accounts of the human person that can hope to do justice to this ontological note. I see the need to go beyond Kitwood’s “single complex reality” in which every psychological event is a brain event. There is more than one way to avoid Descartes’ error …… with regard to human persons [83].

If this approach is deemed to have merit, it could contribute a suitably framed module in the training of people preparing to enter the professional care of people with dementia and more generally the care of older people.

Acknowledgments

I express my thanks to Professor David Ames (no relation), Professor John Swinton, Associate Professor Chris Cordner, Fr. Robert Holland and Dr Sally Osborne for helpful conversations. All failings are my responsibility.

Author Contributions

The author did all the work.

Competing Interests

The author has declared that no competing interests exist.

References

  1. Van Gorp T, Vercruysse B. Frames and counter-frames giving meaning to dementia: A framing analysis of media content. Soc Sci Med. 2012; 74: 1274-1281. [CrossRef]
  2. Brobary H. Dementia Research Update, Australia, 2011, Dementia Collaborative Research Centre – Assessment and Better Care.
  3. Dementia Australia, commissioned research undertaken by NATSEM, University of Canberra. (2018). Dementia Prevalence Data 2018-2058. Go to https://www.dementia.org.au/files/documents/2018-2058_Dementia_prevalence_ST_1.pdf.
  4. Epp T. Person-centered dementia care: A vision to be refined. The Canadian Alzheimer Disease Review. 2003; 5: 14-19.
  5. Swinton J. Dementia, Living in the memories of God. Michigan: Erdman’s, Grand Rapids; 2017. p. 138.
  6. Kitwood T, Bredin K. Toward a theory of dementia care: Personhood and wellbeing. Ageing Soc. 1992; 12: 269-287. [CrossRef]
  7. Kitwood T. Person and Process in Dementia. Int J Geriatr Psychiatry. 1993; 8: 541-545. [CrossRef]
  8. Kitwood T. Dementia Reconsidered, The Person Comes First. Buckingham: Open University Press; 1997.
  9. Dewing J. Personhood and dementia: Revisiting Tom Kitwood’s ideas. Int J Older People Nurs. 2008; 3: 3-13. [CrossRef]
  10. Adams T. Kitwood’s approach to dementia and dementia care: A critical but appreciative review. J Adv Nurs. 1996; 23: 948-953. [CrossRef]
  11. Sabat S, Collins M. Intact, social, cognitive ability, and selfhood. Am J Alzheimers Dis. 1999; 14: 11-19. [CrossRef]
  12. Sabat S, Harre R. The Alzheimer’s disease sufferer as a semiotic subject. Philos Psychiatr Psychol. 1994; 1: 145-160.
  13. Matthews EA, Farrell GA, Blackmore AM. Effects of an environmental manipulation emphasizing client-centred care on agitation and sleep in dementia sufferers in a nursing home. J Adv Nurs. 1996; 24: 439-447. [CrossRef]
  14. Burgener SC, Dickerson-Putman J. Assessing patients in the early stages of irreversible dementia. The relevance of patient perspectives. J Gerontol Nurs. 1999; 25: 33-41. [CrossRef]
  15. Richards KC, Sullivan SC, Phillips RL, Beck CK, Overton-McCoy AL. The effect of individualized activities on the sleep of nursing home residents who are cognitively impaired: a pilot study. J Gerontol Nurs. 2001; 27: 30-37. [CrossRef]
  16. Sabat SR, Fath H, Moghaddam FM, Harre R. The maintenance of self-esteem: Lessons from the culture of Alzheimer's sufferers. Cult Psychol. 1999; 5: 5-31. [CrossRef]
  17. Kitwood T. Cultures of care: Tradition and change. The New Culture of Dementia Care. 1995.
  18. Riachi R. Person centred communication in dementia care: A qualitative study of the use of SPECALTM method by care workers in the UK. J Soc Work Pract. 2018; 303-321. Published online: 26 Oct 2017, https://doi.org/10.1080/02650533.2017.1381948.
  19. Kitwood T. Dementia Reconsidered, The Person Comes First. Buckingham: Open University Press; 1997. p. 7.
  20. Sixsmith A. Stillwell J, Copeland J. “Rementia”: Challenging the limits of care. Int J Geriatr Psychiatry. 1993; 8: 993-1000. [CrossRef]
  21. Kitwood t. Cultures of Care: Tradition and Change, in Benson and Kitwood. 1995.
  22. Kitwood T. Brain, mind and dementia: With particular reference to Alzheimer's disease. Ageing Soc. 1989; 9: 1-15. [CrossRef]
  23. Sixsmith A. Stillwell J, Copeland J. “Rementia”: Challenging the limits of care. Int J Geriatr Psychiatry. 1993; 8: 993-1000. [CrossRef]
  24. Kitwood T. Dementia Reconsidered, The Person Comes First. Buckingham: Open University Press; 1997.
  25. Savundranayagam MY, Moore-Nielsen K. Language-based communication strategies that support person-centered communication with persons with dementia. Int Psychogeriatr. 2015; 27: 1707-1718. [CrossRef]
  26. Kitwood T, Dementia Reconsidered, The Person Comes First. Buckingham: Open University Press; 1997. p. 8
  27. Kitwood T, Dementia Reconsidered, The Person Comes First. Buckingham: Open University Press; 1997. p. 10.
  28. Kitwood T, Dementia Reconsidered, The Person Comes First. Buckingham: Open University Press; 1997. p. 100.
  29. Kitwood T, Dementia Reconsidered, The Person Comes First. Buckingham: Open University Press; 1997. p. 17-19.
  30. Kitwood T, Dementia Reconsidered, The Person Comes First. Buckingham: Open University Press; 1997. 8.
  31. Kitwood T, Dementia Reconsidered, The Person Comes First. Buckingham: Open University Press; 1997. p. 8.
  32. Kitwood T, Dementia Reconsidered, The Person Comes First. Buckingham: Open University Press; 1997. p. 9.
  33. Gordon M. Megan-Jane Johnstone. Alzheimer’s Disease, Media Representations and the Politics of Euthanasia: Constructing Risk and Selling Death in an Ageing Society. Surrey, United Kingdom: Ashgate, 2013. Can J Aging. 2015; 34: 258-260. [CrossRef]
  34. Post S. The Moral Challenge of Alzheimer’s Disease. Baltimore MD: Johns Hopkins Press; 1995.
  35. Kitwood T, Dementia Reconsidered, The Person Comes First. Buckingham: Open University Press; 1997. p. 10.
  36. Kitwood T, Dementia Reconsidered, The Person Comes First. Buckingham: Open University Press; 1997. p. 8-12.
  37. Buber M. I and thou (R. Gregor Smith, trans.). New York, NY: Scribner; 1958.
  38. Kitwood T, Dementia Reconsidered, The Person Comes First. Buckingham: Open University Press; 1997. p. 10.
  39. Kitwood T, Bredin K. Toward a theory of dementia care: Personhood and wellbeing. Ageing Soc. 1992; 12: 269-287. [CrossRef]
  40. Savundranayagam MY, Moore-Nielsen K. Language-based communication strategies that support person-centered communication with persons with dementia. Int Psychogeriatr. 2015; 27: 1707-1718. [CrossRef]
  41. Kitwood T. When your heart wants to remember: Person centred dementia care. RCN Nursing Update. 1999; 3: 1-22. [CrossRef]
  42. Kitwood T, Dementia Reconsidered, The Person Comes First. Buckingham: Open University Press; 1997. p. 46-47.
  43. Kitwood T, Dementia Reconsidered, The Person Comes First. Buckingham: Open University Press; 1997. p. 58-61.
  44. Kitwood T. Positive long-term changes in dementia: Some preliminary observations. J Ment Health. 1995; 4: 133-144. [CrossRef]
  45. Spaeman R. Persons: The difference between ‘someone’ and ‘something’. Oxford: Oxford University Press; 2006. p. 242.
  46. Mackie JL. Ethics: Inventing Right and Wrong. Pelican Books; 1977. p. 38.
  47. Papineau D. The Rise of Physicalism, in Gillett C, and Loewer B, eds., Physicalism and its Discontents. Cambridge: Cambridge University Press; 2001,
  48. Ladyman J, Ross D, Spurrett D, Collier J. Everything Must Go, Metaphysics Naturalised. Oxford: Oxford University Press; 2006. [CrossRef]
  49. Cunningham C. Darwin’s Pious Idea: Why the ultra Darwinists and creationists both get it wrong. Michigan: Eerdmans, Grand Rapids; 2010.
  50. Ames S. The Rise and Consequences of Scientific Naturalism’, Anthropos in the Antipodes, (ed.) Robyn Horner, Patrick McArdle, and David Kirchhoffer. Melbourne, Mosaic Books; 2013. p. 251-272.
  51. Lonergan B. Insight. London: Darton. 1958. Chp. XIX.
  52. Ward K. Rational Theology and the Creativity of God. Oxford: Basil Blackwell; 1982.
  53. Spitzer RJ. New Proofs for the Existence of God, Contributions of Contemporary Physics and Philosophy. Michigan: Wm. B. Eerdmans Publishing; 2010.
  54. Smith RS. Naturalism and Our Knowledge of Reality: Testing Religious Truth-Claims. Routledge, 2016. [CrossRef]
  55. Not everyone’s thinking leads them to formulate a world-view or a metaphysics, though their writing might easily lead others in that direction. For example, R. Gaita, Good and Evil: An Absolute Conception, Routledge, London, 2004.
  56. This is not so for Buber as Kitwood makes clear; see Kitwood T, Dementia Reconsidered, The Person Comes First. Buckingham: Open University Press; 1997. p. 69.
  57. Darwall S. The Second Person Standpoint, Morality, Respect and Accountability. Harvard: Harvard University Press, paperback edition; 2009.
  58. Darwall S. Precis: The second person standpoint. Philos Phenomenol Res. 2010; 216-228. [CrossRef]
  59. Darwall S. The Second Person Standpoint, Morality, Respect and Accountability. Harvard: Harvard University Press, paperback edition; 2009. 5f.
  60. Darwall S. Precis: The second person standpoint. Philos Phenomenol Res. 2010; 216f. [CrossRef]
  61. Darwall S. Precis: The second person standpoint. Philos Phenomenol Res. 2010; 219. [CrossRef]
  62. Darwall S. Precis: The second person standpoint. Philos Phenomenol Res. 2010; 218. [CrossRef]
  63. Darwall S. The Second Person Standpoint, Morality, Respect and Accountability. Harvard: Harvard University Press, paperback edition; 2009. p. 102. Again, I am wondering what this means for people with dementia at any stage, but especially at an advanced stage.
  64. Levin D. Review of Stephen Darwall’s book, (2006), The Second Person Standpoint, Morality, Respect and Accountability, in Notre Dame Philosophical Reviews, 2008. Accessed 2018-10-10; http://ndpr.nd.edu/news/23292-the-second-person-standpoint-morality-respect-and-accountability/.
  65. Feinberg J. The Nature and Value of Rights, in, Rights, Justice and the Bounds of Liberty. Princeton NJ: Princeton University Press; 1980. p. 151. [CrossRef]
  66. Darwall S. The Second Person Standpoint, Morality, Respect and Accountability. Harvard: Harvard University Press, paperback edition; 2009. p. 18.
  67. Darwall S. The Second Person Standpoint, Morality, Respect and Accountability. Harvard: Harvard University Press, paperback edition; 2009. p. 18.
  68. Brewer TM. Morality and the Second Person. Philos Q. 2009; 59: 163-167. [CrossRef]
  69. Brewer TM. Morality and the Second Person. Philos Q. 2009; 59: 165. [CrossRef]
  70. Brewer TM. Morality and the Second Person. Philos Q. 2009; 59: 166. [CrossRef]
  71. Stephen Darwall’s lecture, https://www.youtube.com/watch?v=SLmDAJc1Jyw, on ‘The Hard Problem of Normativity’. The lecture shows that if there is moral obligation in the world then there is a solution to this hard problem. The question is what would have to be the case for moral obligation to exist in the world. The above discussion, including my response to Mackie’s idea of ‘queer facts’ is a start towards my answer.
  72. Darwall S. The Second Person Standpoint, Morality, Respect and Accountability. Harvard: Harvard University Press, paperback edition; 2009. p. 222.
  73. Singer P. Practical Ethics. Cambridge: Cambridge University Press; 1979. p. 83.
  74. Singer P. How Are We to Live? Ethics in an Age of Self Interest. Prometheus Books; 1995. p. 197- 198.
  75. Specter M. The Dangerous Philosopher. New Yorker. 1999; 75: 46-55.
  76. Kitwood T, Dementia Reconsidered, The Person Comes First. Buckingham: Open University Press; 1997. p. 136.
  77. Kitwood T, Dementia Reconsidered, The Person Comes First. Buckingham: Open University Press; 1997. p. 7.
  78. Kitwood T, Dementia Reconsidered, The Person Comes First. Buckingham: Open University Press; 1997. p. 45-47.
  79. Kitwood T, Dementia Reconsidered, The Person Comes First. Buckingham: Open University Press; 1997. p. 63.
  80. Kitwood T, Dementia Reconsidered, The Person Comes First. Buckingham: Open University Press; 1997. p. 18.
  81. Kitwood T, Dementia Reconsidered, The Person Comes First. Buckingham: Open University Press; 1997. p. 18.
  82. Damasio AR. Descartes’ Error. London: Picador; 1995. p. 112.
  83. Helminiak D. Brains, Consciousness and God: A Lonerganian Integration. New York: State University of New York Press; 2015.
Newsletter
Download PDF

TOP