Chapter Sixteen: Does a Person Lose Personhood Through Dementia
“….as I travel toward the dissolution of my self, my personality, my very essence…. Don’t abandon me at any stage for the Holy Spirit … links our souls, our spirits – not our minds or brains”
Christine Bryden (2002) Australian Anglican diagnosed in 1995 with dementia
There has recently been a spate of interest in dementia in the media and in medical journals. This is partly due to the societal response to NHS cutbacks when more people are surviving to old age and most of us have a personal interest in this area of health care. Nurse Bev Smith speaking at the RCN Congress 2007 said “dementia is everybody’s business….everyone of us is likely to encounter dementia in a patient, in our family, or in ourselves and patients with this condition must not be de-humanised.’ I believe it is also partly due to renewed interest in how to care well for people with dementia often referred to as the ‘new culture of dementia care.’
From this upsurge of interest we ask the question ‘does a person loose personhood through dementia?’ ‘We know the Christian answer,’ says Butler & Orback, ‘that each individual is unique in God’s sight. It is a comfort to many but for others belief alternates with doubt’ (1993, pg.27). CJGilleard adds, ‘when so many aspects of the personality – behavioural, affective and cognitive – are affected beyond repair, what follows is not simply the loss of some particular function, but is in essence the loss of the person’ (CJGilleard 1984 Pg. 18). Thus there is an affirmative undercurrent to our question that I wish to explore further.
In this paper I will begin with a brief section on definitions of dementia followed by a discussion on personhood and personality. This should develop into the crux of my response to the question wherein I state how personhood is undermined. I will counteract this with a section of positive comment on how personhood can be preserved despite advancing dementia, looking at creative approaches to communication, new studies in understanding dementia, the chaplain’s role and the importance of the sacramental.
As an Anglican health care chaplain working mainly with older people, I will inevitably reveal a Christian theological bias. It is my intention to reflect theologically throughout the paper and I acknowledge that scripture shapes my understanding adding a biblical metanarrative to the context (Lyall 2001 pg. 46).
I conclude the paper with a deliberate twist on the question by asking which person are we referring to and indeed what person will I be in response to the question ‘does a person loose personhood through dementia.’
Definitions
Let us briefly examine some definitions and categories of this disease before we return our focus to the person and personhood.
Dementia is a term used to describe various brain disorders that have in common a loss of brain function that is usually progressive and eventually severe. There are over 100 different types of dementia. The most common are Alzheimer’s disease, vascular dementia and dementia with Lewy bodies. The Alzheimer's Society estimates that there are currently over 700,000 people in the UK with dementia. Five percent of over 65 year olds and 20% of over 80 year olds suffer dementia. The New Dictionary of Medical Ethics defines Dementia as ‘a syndrome of acquired global impairment of cognitive function’ (Pg.66). This means that the structure and chemistry of the brain become increasingly damaged over time. There are some drugs available that appear to alleviate (not cure) some of the symptoms or temporarily slow down the progression of symptoms of dementia.
Symptoms of dementia include loss of memory, confusion and wandering plus problems with speech and understanding. Personality is also affected resulting in challenging behaviour, depression and grieving. The New Dictionary adds that these impairments raise a central ethical issue of personhood. ‘Is the person with dementia the same person she used to be viewed through the veils of amnesia, loss of reasoning power and impairment of speech, or has the disease changed the person rather than merely the personality?’ (Pg. 66) We shall pick up on this in our discussion on personhood.
There are three commonly accepted stages of dementia: Mild, Moderate and Severe Dementia, however, categorising dementia in these stages is less prevalent now.[1]
The New Dictionary of Christian Ethics stresses the importance of the theological. ‘Given the …difficulties in empathising [with the individuals][2] a theological perspective becomes essential in determining attitudes, ethics and practical care.’ By establishing a Theology of dementia which emphasises the unchanging and unequivocal relationship of God towards humanity I hope to argue throughout this paper that personality may indeed diminish but personhood cannot.
Personhood and Personality
We need to clarify what we understand by person, personhood and personality in order to consider further our question, ‘does a person loose personhood through dementia?’
The word ‘person’ is used in medical ethics to denote someone who has ‘full moral status’ and ‘personhood’ is the possession of it. Although our paper is concentrating on dementia, the use of these terms is also important in the contexts of mental disabilities, abortion, embryo research and the definition of death (Ed Boyd, Higgs, Pinching, 1977, pg. 186).
Christine Bryden diagnosed in 1995 with dementia in 2002 said ‘at what stage can you deny me my selfhood and my spirituality?…. As I loose an identity in the world around me, which is so anxious to define me by what I do and say, rather than who I am, I can seek an identity by simply being me, a person created in the image of God’ (from www.christinebryden.com).
There is a social tendency to depersonalise those who have severe dementia. Social practice implies an apparent loss of personhood through dementia. Our societal traits of ageism paint a picture of older people as incompetent, dependent, slow and intellectually dim. ‘The ways in which people are conceptualised, stigmatised, alienated and caricatured …rob them of their essential human dignity and freedom and often exclude them from meaningful participation within society’ (Swinton 2000, pg.18).
In contrast, Wilkinson explains that the concept of the person has its roots in the doctrine of the Trinity and the three persons of the Godhead. The early Christian fathers recognised that a ‘person’ was simply a ‘distinct individual’ (Wilkinson pg. 242).
Many, including Messer use the terms person and personhood interchangeably, “Personhood isn’t something we have in time… as embodied spirits we are persons throughout the whole of life” (Messer pg. 16). Where I find the misunderstanding arising in terminology is in ‘personhood’ and ‘personality.’ ‘The total configuration of motivated response tendencies of an individual constitute that person’s ‘personality’’ (pg. 657 Macquarrie & Childress, 1990). Shamy clarifies the point, ‘personhood is given to human beings by God’ (Shamy, 2003, pg.117). We get our personality or our identity from different sources such as culture, gender, temperament, class, lifestyle, outlook, beliefs, values, commitments, tastes, interests, work, upbringing, to name a few. It is my argument that personality can change or be lost and identity can be taken away but personhood cannot.
James Nelson in Human Medicine (1984) puts a counter argument and refers to patients with severe dementia as ‘the post personal state and can no longer be accepted as persons’ (in Wilkinson 1988, pg. 321).
I contend that personhood cannot be taken from us because it is God-given. ‘It cannot be earned and cannot be lost. Furthermore, it should be a way of seeing the other person rather than in her utility value to me’ (Lebacqz in Ed., Messer (2002) pg. 51). Labacqz is referring to Genesis Chapter 1v26-27, which indicates that humans are unique in all creation because we are made in God’s image (imago dei). ‘Personhood is our essential dignity as human beings made in the image of God. …….People with dementia will gradually loose sense of identity [loss of personality] … it is the …obligation of the ..body of Christ, to remember for those of the faith family who can no longer themselves remember. My understanding of a person with dementia is not what I see before me but what God has said and done’ (Shamy pg.129).
Kitwood adds, ‘if we think independently of what is going on in the nervous system we are guilty of the error of Descartes in separating mind and body. Maintaining personhood is both a psychological and neurological task.’ Since Descartes (1596-1650) there has been philosophical debate about the relationship between mind and body ‘I think therefore I am’ leads us to a ‘neurology of personhood’ (Kitwood, 2005, Pg. 19). A psychological and a faith response to Descartes may be ‘I am, not because I think but because I am loved’ (Saunders 2002 pg. 20).
O’Connor and 9 other leading Canadian psychologists set out to challenge the academic tendency to view dementia as primarily a biomedical phenomenon. The abstract of their research into broadening the vision, states ‘growing evidence suggests that the performance and behaviour of persons with dementia are not exclusively determined by neuropathology but are influenced by personal histories, social interactions and social contexts. This evidence shifts the attention from the disease process to a more in-depth understanding of the place of personhood in dementia care.’ (O’Connor, 2007) Their Venn diagram of three intersecting domains of enquiry ‘positions personhood at the intersection and gives a more holistic conceptualisation’
The Three domains are: 1.Subjective experience 2. Interactional environment 3. Socio-cultural context (pg.5).
A Brief description of the three domains will assist us further in understanding personhood:
1. Subjective experience: Growing recognition that dementia sufferers are quite aware of their situation and can contribute important insight about their experiences and needs (Pg.2).
2. Interactional Environment: Personal relationships are only one aspect of the interactional environment. The dementia sufferer interacts daily with use of physical space and other physical activities offer positive interactional opportunities.
3. The Socio-Cultural context: “Context may be conceptualised as including race and ethnicity, social location, organisational practices and policies and societal discourses.” More recent research ...recognises the need to ‘embed lived experience into a broader socio-cultural context’ (pg.4).
I argued above that social practice implies an apparent loss of personhood through dementia, but it is not only in social practice that this implication prevails. There is a strong case from a utilitarian philosophical viewpoint which asks the question of Biomedical ethics - when is a person not a person? For example is a comatose patient, a foetus or an older person with severe dementia as much a person as an able bodied adult? Messer says, this is a significant question for bioethics, ‘modern discussion operates on the basis that ‘persons’ are a class of beings defined by certain properties, capacities or potentialities. Rationality and self-consciousness have been popular criteria in philosophical discussion’ (Messer Pg. 65).
Utilitarian, Peter Singer commenting on the Lords ruling on Tony Bland, a patient in a persistent vegetative state (PVS) said ‘they have taken the brave step of recognising that at a minimum, consciousness is essential if life is to be worth living’ (P Singer Rethinking Life and Death Oxford Uni Pres 1995 pg.80). Singer concludes that ‘worthwhile life depends on the adequate functioning of the cerebral cortex.’ I conclude that Singers approach would leave people with dementia as having less rights to life as someone with ‘adequate functioning of the cerebral cortex.’ He argues, they are human beings but not ‘persons’ in the full sense of the word. ‘Some human beings are persons and some are not’ (Ibid pg.192).
Singer, is influenced by John Locke (1632-1704) who defines a person as ‘a thinking intelligent being that has reason and reflection and can consider itself… in different times and places’ (quoted in Dworkin, 1977 Ch7). I believe Locke, Dworkin and Singer have gone too far and results in marginalising those with dementia and those with other handicaps where the intellect and reason are challenged or where language and self-expression is a problem for the individual. The utilitarian contribution to the moral debate on personhood stands out as a powerful, yet dangerous argument in the light of a recent UK ‘prediction by experts that more than 1.7 million people will have dementia by 2051 costing billions of pounds each year’ (BBC News 19th April 2007).
Recently, through the excellent work by Kitwood and lately by Eileen Shamy, the ‘rationality and self-consciousness’ approach has been criticised. The new approach is for relationship and community to be taken into consideration in arriving at an understanding of ‘personhood.’ Tom Kitwood’s definition of personhood is thus, ‘the standing or status that is bestowed upon one human being by others in the context of relationship and social being’ (Kitwood 2005, Pg. 8).
The term personhood is found (says Kitwood) in three main types of discourse: transcendence, ethics and social psychology. Transcendence acknowledging the imago dei, the sacred, the life revered. The ethical approach may fail to see personhood as interdependent but the Kantian philosophy of treating others with respect and the insistence that every person has absolute value are prominent. Thirdly, social psychology is the approach Kitewood champions placing the individual in a social group. Indeed, he argues that his definition (above) gives a unified core meaning in each of these contexts. Booker (2004) says Kitewood’s attention to personhood is one of the most significant advances in understanding dementia in the past decade. (Centre for Research on Personhood in Dementia (CRPD, Canada) Quoted in O’Connor et al 2007). This seminal work has spawned other empirical work on personhood which has recognised, alongside neuropathology the importance of the subjective experience, the significance of the relational and the cultural in understanding and valuing the person with dementia.
I conclude this section on personhood and personality by reiterating that there is some confusion surrounding the terminology of personhood and person and that they tend to be used interchangeably. Unfortunately, this confusion has contaminated the use of personhood and personality, which in my view are not interchangeable. Personality is that by which we are identified and is developed from many different sources. Personhood is that unique ‘distinct individual’ who, according to Judaeo-Christian tradition, bears the image of God, it cannot be taken from us.
I have indicated that personality can be lost through dementia but personhood cannot, however there are many ways in which personhood is undermined and that leads us to a social response which causes many people to relate to a person with dementia as though they actually do loose personhood through dementia. I will now examine some of the ways in which personhood is undermined in society today.
How personhood is undermined
Personhood can be undermined by the attitude and behaviour of others towards the person with dementia. This can range from ignoring their actions and reactions to failing to hear or valuing their comments. Kitwood’s studies have identified seventeen elements in the care environment that has undermined personhood.
1.Treachery (forms of deception).
2.Disempowerment (not allowing use of their abilities).
3.Infantilisation (Patronising).
4. Intimidation (inducing fear through threats etc…)
5.Labelling (words which devalue the person e.g. ‘dements’).
6.Stigmatisation: (treating as if diseased or outcast)
7.Outpacing (providing information or making choices to fast for person to understand).
8.Invalidation (failing to acknowledge the subjective reality of a persons experience, especially feelings).
9.Banishment (excluding or sending away).
10.Objectification (treating person as if an object – pushed, lifted, rather than sentient beings).
11.Ignoring
12.Imposition (forcing or denying to do something).
13.Withholding (refusing to meet a need or give attention).
14.Accusation (blaming for things that arise due to lack of ability).
15.Disruption (intruding or breaking their frame of reference).
16.Mockery.
17.Disparagement (telling person they are incompetent, useless or worthless).
Kitwood’s response was to push for a ‘person centred paradigm’ (pg. 54 Kitwood, 2005). Swinton refers to this as ‘liberation as a force of rehumanisation.’ We shall see below, that the person centred approach encourages sociability, ‘such a gesture and way of ‘being with’ that can initiate and sustain liberation’ (Swinton 2000 pg.23).
There is growing public awareness of the needs of people with dementia but our western society seems to be so focussed on being consumers and in leading lives which enable us to be consumers such as our use of our time (business and leisure), our earning capacity, our usefulness (how we contribute) that we seldom make space for those who are timeless, earn-less, are useless and subliminally we treat as worthless. As Swinton says, ‘to have dementia, is to have a form of neurological malfunctioning that stands in stark contrast to cultural assumptions that define the very nature of human personhood. In a society that prizes reason and autonomy and assumes the primacy of the self-made individual and economic productivity…the vulnerable are pushed into the social status of non-persons’ (Swinton, 2000 pg. 117). Fortunately, the scriptures teach us in the parable of the banquet in Luke 14 v 16-24 that God’s attention turns from those who are too busy to those who are poor and disabled to share in his banquet. Surely, this says something about God valuing those who society marginalises. There is value in humans being rather than humans doing!
We can also undermine personhood of a person with dementia by failing to appreciate their spiritual needs. Prezsch in The New Dictionary of Christian Ethics says ‘the spiritual needs of people with dementia are largely ignored. Pezsch continues, ‘the sacrament of the present moment is very important and soon forgotten’ (Pg. 295). Mark Cobb in the Hospital Chaplains handbook agrees. ‘A discontinuity that older people often face is a disconnection from their faith community.... In providing spiritual care of people with dementia, chaplains should seek to promote their value and sense of self through giving time and finding ways to connect with them in the present moment. Spiritual care can contribute to the quality of life of older people at individual, social and societal levels’ (Cobb 2005, pg. 63).
Shamy stresses the importance of the spiritual in understanding a holistic view of personhood. ‘The word spiritual embraces the essence of what it means to be human….it is concerned with personhood, identity and the meaning of life…The spiritual integrates and holds together the physical, psychological and social dimension of life….. The individual person … is more than the sum of his or her parts’ (Pg. 60, 2003). Health care that fails to treat the spiritual dimension fails to treat the whole person. ‘Neglect of the spiritual dimension of care seriously impoverishes the quality of life for people with a primary dementia….’ (Ibid pg.60). Shamy clearly separates the spiritual from the religious in her writing. The Religious she defines as ‘relating to or having reference to religion, which is a framework of Theistic beliefs and rituals giving expression to spiritual concerns.’ In contrast, I have found the framework and the rituals to be a means of communicating spirituality to some people with dementia. Sharing of Holy Communion, reciting the Lords Prayer or a doxology offer moments of connection with a present lucidness as observed by the chaplain.
It is my contention that personhood undermined is personhood diminished, not because a person looses personhood through dementia but because societal response and some academic comment subliminally treats people with dementia as worth less in our consumer conscious world. The undercurrent appears to be that they are a drain on health care resources and they are unable to contribute fully modern society. I believe this is precisely why we must re-examine personhood and dementia. If society succeeds in diminishing personhood through dementia, society itself will be diminished. I will refer to this again in my concluding remarks. Before that I would like to put a positive spin on the discussion by examining ways in which personhood can be preserved through dementia.
How personhood can be preserved
Stanley Hauerwas makes the point that we are social beings made to be in relationship with others and ‘what advocates of personhood have failed to show is how the notion of ‘person’ works in a way of life with which we wish to identify’ (On Moral Medicine pg.279). Hauerwas is making a good point and one which Kitwood and O’Connor et al attempt to deal with empirically. We seldom think of ourselves as ‘persons.’ I am a Chaplain, ex-accountant, husband, dad, disabled, Irish living in England. This pen biography places me in history in relationships – ‘person’ is abstract. To preserve personhood of a person with dementia we must attempt to maintain existing and form new loving relationships. A person with dementia is reliant on those who are active in their caring to maintain these relationships since they have lost that ability to initiate relationships. ‘Our residents need to believe that they are valued and valuable, loved and appreciated, and that they do have something to offer the rest of us…… we have much to learn from people with dementia… we can receive as well as give’ (Pg. 13 J.Bell & I.McGregor in The New Culture of Dementia Care (Ed Kitewood & Benson, 1995)) ‘The new culture of dementia care seeks to promote a person centred approach, striving to discover the uniqueness of each individual and promote individual rights and choice’ (Pg. 30 Ibid).
Sean Buckland’s research observed people with dementia closely over long periods of time. He emphasised the need for the development of specific relationships between the carer and the person with dementia...’that take into account each individuals personhood, the variety of personality and the abilities of the carer.’ ‘Person centred care is not mechanical. …..It is more of an art, requiring imagination and creativity (pg.33, 34 Journal of Dementia Care, 1995).
Communication More than words
To develop the ‘art’ of preserving personhood of we need to look afresh at ways and means of communicating. Shamy, (2003, pg. 71) stresses the importance of encouraging ‘sociability among people with dementia.’ Relationships depend on communication and communication is not limited to words alone. In order to communicate better we need to understand better the effects each stage of the dementia process has on the sufferer. Lorraine Ferguson’s table on the effects of dementia on communication skills is helpful for those interested in developing the art of communication (Shamy, 2003. pg. 70). She shows the effect each stage of dementia has on: Ideas, Words, Grammar and Use of language. This kind of aide memoir is useful for carers to pitch their communication and their expectations at the right level. In addition the carer must develop a patient acceptance of their limitations as well as developing their listening skills, sharing pain, sharing self and sharing knowing when to stop (Romans 12v15).
Beyond words there are a myriad of creative ways of attempting communication and thus preserving personhood. Resources which have worked with others who have succeeded in maintaining relationships with people at various stages of dementia include: (Shamy, 2003, pg. 70)
Beautiful Pictures
Music (Popular songs of earlier era)
Flowers
Poetry
Nature (Trees/sky/sea/lakes/rivers/gardens)
Exercise
Reading
Touch
I have recently been loosely involved in securing a £20,000 grant to develop The Barratts Road Allotments in Wakefield so that it is accessible for the residents of the residential homes in the locality. It was completed in March 2007 and already there has been a benefit to those who enjoy the beauty of nature, the sights and sounds and smells and the physical opportunity to visit a gardening working environment. These are examples of creative ways in communicating.
Facing our own vulnerability
A more painful way of preserving the personhood of people with dementia is to face up to our own vulnerability. ‘The stripping away of the intellectual functioning takes both the person with dementia and those who accompany them beyond the usual patterns of interaction into a deeper level of communication where soul meets soul. We may learn to use our own weakness, confusion and fear to find a way through to a new understanding both of others and of our own spirituality’ (Barnett Pg. 43 Ed Kitwood & Benson, 1995). 2 Corinthians 12 v 9 speaks of God’s ‘strength being made perfect in our weakness.’ Our own suffering experiences may open windows through which God’s strength may radiate and through which God’s love may flow from us to the dementia sufferer. Henry Nouwen, in the Wounded Healer, puts it this way, ‘no one can help anyone without becoming involved….making one’s own painful and joyful experiences available as sources of clarification and understanding’ (1994, Pg.57). “The paradox of the transforming quality of suffering …is both our challenge and our promise…our port and our adventure. It is through our own vulnerability – our sensitivity to our own suffering, our brokenness and our inadequacies that we find …the divine spark within us through which we can experience our oneness with others and with God” (Barnett in Journal of Dementia Care, 1995, pg. 41).
Chaplain’s Perspective
From a healthcare chaplains viewpoint a further way of maintaining personhood is simply by being present. Christine Brydens plea demands a responds from the minister of religion. ‘As I travel toward the dissolution of my self, my personality, my very essence…. Don’t abandon me at any stage for the Holy Spirit connects us. It links our souls, our spirits – not our minds or brains… Minister to me, sing with me, pray with me, reassure me of your presence and through you of Christ’s presence.” I hear echoes of John 15 v 12 ‘Love one another as I have loved you.’ The most precious gift we can give is love.
‘Love….. focuses on the positive, creative…qualities of the loved one – that which makes them a unique child of God – their irreplaceability. This divine essence of the person is what remains unchanged. It is this gift which persons with dementia most need from us; the upholding and preservation of personhood by seeing that which is unchanged and uniquely precious in them reflected in ….those who love them. Care …is not enough. We need love in order to be able to give to persons with dementia what they most deeply need. …. This transformation will only come .. from that place deep within us which is often reached only through our own brokenness, fear and confusion’ (pg. 42, Barnett in Journal of Dementia Care, 1995).
I mentioned earlier, the importance of the Sacramental and the liturgical in preserving personhood. Many times in visiting people with dementia have I wondered if I am communicating at all only to hear them join with me in The Lords Prayer and pray it from the heart and word perfect. I have also found the person with dementia brought to a present ‘reality’ for a brief time through sharing Holy Communion. Some would conclude this to residual memory, ‘the last vestiges of the person that was.’ On the contrary, Swinton argues that this reality ‘takes us beyond the boundaries of fading neurology and into the hidden mysteries of personhood and what it means to be human’ (Swinton 2000, pg.179).
When I was parish priest in Wakefield, I used to take a monthly service in several residential care homes, many of the residents had dementia. There were many disruptions, much laughter, many tears and great joy. We tried to ensure the worship was visual, short, singing old familiar hymns, the service was an ‘All Age’ style of service. John Swinton describes the act of worship as ‘a deep and mysterious activity that reaches beyond our cognitive sensibilities and touches those regions of human experience where the ‘spirit helps us in our weakness’’ (Rom 8v26). The church as a worshipping community has a vital role in the spiritual resurrection of people with dementia through gifts of praise, worship and sacrificial friendship (Ibid. 179).
Does a person loose personhood?
In conclusion, I contend that personhood is given by God and cannot be lost or taken by the academic reasoning of Utilitarians or societal ignorance. I believe there is misunderstanding in terminology and whilst personhood cannot be lost, personality can be lost through dementia. Personhood is undermined by a number of factors, including the attitude and behaviour of others, the present tendency in western society to give worth those who are consumers before those who are worth less in consuming capacity. Spiritual neglect can also undermine personhood. I hope I have raised a challenge to all who can, to strive to preserve personhood on behalf of those who cannot.
Finally, the question we have posed has an uncomfortable twist when we ask which person are we referring to? Perhaps the question says more about the questioner than about a person with dementia. In the famous parable of the Good Samaritan (Luke 10 v 30 - 37), the story appeared to be about a person who suffered injury through a violent abuse. The parable was, in fact, about ‘who is the good neighbour’ of the afflicted person. I conclude this paper by turning question around such that it is not so much ‘does a person loose personhood through dementia’ but what person shall I be in response to a persons dementia?
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[1] Goldsmith amplifies these stages with nine stages as follows: Slipping: Suspecting: Covering up: Revealing: Confirmation: Maximising: Disorganisation: Decline: Death . (Pg 60 Goldsmith 2004)
[2] Brackets added
