Dementia, identity and spirituality
Chris Perkins
Because people living with dementia forget details of their past, lose the skills they developed during a lifetime and behave in an uncharacteristic manner, it becomes easy for others to regard them as somehow not themselves – 'not the woman I married' or 'an empty shell of himself'. While we all change over time to some degree, this more drastic and rapid change can be heart-breaking. Often, through pain or fear, we would prefer to distance ourselves and regard the person with dementia as something different from us, a sort of 'non-person'.
Some philosophers have questioned whether someone who has lost language, the ability to reason and their memory of a continuing personal identity qualifies fully as a human being. This argument about 'personhood' in dementia was at its height in the early part of this century. It is now generally accepted, at least amongst those involved with people with dementia, that they are obviously 'people', but vulnerable to being treated as less than unless there is a conscious effort made to maintain their full human status.
Western tradition has privileged reason, reflection and individualism as important markers of identity. Post (1995) writes about how our Western 'hypercognitivist' society overly-values intellect and fails to adequately recognise the vital nature of other aspects of being human. He argues for a more holistic understanding of what it means to be a person, one linked to being sentient, emotional, relational and autobiographical as well as cognitive (Post 2006).
People with dementia do retain a sense of themselves. This, for example, is seen when people still refer to themselves as 'I' or object to attempts to make them do something they don't want to do. That is, they are sentient and retain a sense of agency until the most advanced stages of the condition. People with dementia maintain typical social human relations and emotions seen, for example, when they become distressed about another's pain, look for people to whom they have been closely attached, show frustration during the struggle to communicate or anxiety about how to behave in a situation that is strange to them.
Not all societies or all people in Western society hold the 'hypercognitist', individualistic view. We are more than our own, isolated, brains. In traditional Maori society, to ask about some individual's memory was a mistake; memory was contained in the community and the place and was not the possession of the individual - "memory resides with the tribe" (Shamy, 1997). Loss of memory did not necessarily mean loss of mana or standing. Every person had their place (turangawaewae) in their whakapapa and on the land; there was no way that forgetfulness could change that. The elder was accepted regardless of his or her cognitive state.
This world view reminds us that humans are social creatures and our place in society is not just related to our personal efforts; we are part of a greater whole. Our community very much defines and identifies us, whether through our job, our family, our church, our interests - bowls or Country and Western - or a community of particular people, deaf or lesbian, for example. Even people who would prefer to shun society must make contact from time to time; their aloofness and wish to avoid human contact is part of their personal identity. We are who we are because of who we associate with and how we interact with them, our shared history and relationships. This is not something that disappears with the onset of memory problems and it is to these sources of identity we should turn to help the person with cognitive impairment retain their human connection and status. "Our task, as moral agents" writes Post (2006), "is to remind persons with dementia of their continuing self-identity. We must serve as prostheses, filling in the gaps and expecting that every now and again, the cues we provide will connect with the person..." (p.229).
Dementia is a condition that lasts years or decades. Initially a person's identity is not an issue, but gradually it may become harder to connect meaningfully with them. Speech becomes fragmented, then reduced to a few words, then completely lost. As it gets harder to communicate, the onus to make and keep in contact lies more and more with the person without dementia. Imaginative efforts to understand the person with dementia are required. These involve learning about the person's former personality and habits, close observation of body language, a willingness to make informed guesses and a lot of trial and error.
For example, a woman living in a rest home refused to leave her room for breakfast or eat it there, despite various attempts and encouragement from others. From their investigations, staff understood she was a devout Catholic who liked to say the Rosary at the beginning of each day. However, she would not say the Rosary unless her room was in an orderly state, suitable for a respectful encounter with God. Once they knew this, the staff came in early to make her bed and tidy up. She could then say her prayers and come out to enjoy her breakfast.
The person with dementia remains aware of and sensitive to others' emotional state for a long time and may reflect this with anxiety, withdrawal or aggression. In 1997, Tom Kitwood wrote about the 'malignant social psychology' of residential homes for people with dementia. Negative interactions with staff erode the resident's 'personhood'. He described sixteen examples of malignant social psychology, such as outpacing (going too fast for the person with dementia to keep up), invalidation (the person's feelings are denied or dismissed as irrelevant) and infantilisation (treating the person patronisingly, as if they were a young child). When these interactions occur, the person is diminished. Alternatively, when they are treated well, their personhood is enhanced. This is demonstrated by the person with dementia being assertive, initiating social contact, affection, relaxation, creativity and other positive responses indicating well-being. These ideas about 'person-centred care' have received mainstream attention and are beginning to be formally actualised via various programmes such as Dementia Care Mapping, 'The Spark of Life' (Jane Verity) or 'The Eden Alternative'.
Our role as a society, as families, friends and carers is to support people living with dementia, to allow them to be themselves as much as possible. This involves recognising that each person is uniquely themselves, and this means moving beyond the current bias that those who cannot remember and reason are somehow less than real people. They are part of a community that can support or erode that sense of self.
A key part of supporting a person's sense of self involves respect for the spiritual dimension of their personality. Spirituality can be described as "that which is essential to our humanity, embraces the desire for meaning and purpose and has personal, social and transcendent dimensions." (Allen & Coleman, 2006 pp. 205-206) Despite the losses in function and capacity, spirituality does not change as cognition declines. As Goldsmith (2004) writes: "Spirituality is no different in dementia: only the brain changes. The intrinsic value of the person is never lost."
Killick (2004) suggests that spiritual powers may even grow as cognitive capacity wanes. As the thoughts and words that clutter our minds reduce, a person can become more aware of deeper aspects of themselves. This can sometimes be seen in a person's creative abilities e.g. as dementia progresses some painters change in style to express themselves more freely. A Japanese idea is that the person with dementia is privileged because forgetfulness allows them to live only in the present moment - a goal towards which Zen practitioners strive. (This seems a rather romantic idea; many people with dementia become anxious when they do not know what is going on.)
Christine Bryden (2005) describing her own experience of dementia indicates that she has become more aware of her spirituality:
At the centre of our being lies the true self, what identifies us to be truly human, truly unique, and truly the person we were born to be. This is our spiritual heart, the centre from which we draw meaning in this rush from birth to death, whenever we pause long enough to look beyond our cognition, through our clouded emotions into what lies within.
However, as dementia progresses people may need more assistance from others to express their spirituality and meet their spiritual needs. This assistance is given by family, friends and caregivers, formal and informal. In New Zealand the Whare Tapa Wha (Durie, 1998) or 'bio-psycho-social-spiritual' model acknowledges the importance of spirituality for health. Many health and aged care policy documents such as the Health of Older People Strategy (2002), Palliative Care Strategy (2001) and Aged Residential Care contracts, refer to spirituality, but it is uncertain the extent to which such holistic care is actually implemented on the ground.
To conclude: Holistic models should enable carers to attend to the whole person – including the often neglected spiritual aspects – and not just focus on the disease, to the benefit of all people, with or without dementia.
The last words belong to a woman with dementia:
Sometimes I picture myself like a candle.
I used to be a candle about eight feet tall-burning bright.
Now every day I lose a little bit of me.
Someday the candle will be very small.
But the flame will be just as bright.
Burning Bright (Noon, 2003 in Killick 2004)
Dr Chris Perkins (MB ChB (Otago) FRANZCP, Diploma of Professional Ethics (Auckland) is Director of the Selwyn Centre for Ageing and Spirituality. She is a psychiatrist, with particular expertise in mental health issues affecting older people and in intellectual disability psychiatry.
References
Allen & Coleman ( 2006) Spiritual perspectives on the person with dementia: identity and personhood in Dementia: mind, meaning and the person Ed. J.Hughes, S. Louw & S. Sabat, Oxford, Oxford Medical Publications pp.223-234
Bryden, C. (2005) Dancing with Dementia: my story of living positively with dementia London, Jessica Kingsley Publishers
Dementia Care Mapping http://www.brad.ac.uk/health/dementia/dcm/ Accesssed 02/04/2012
Eden Alternative http://www.edenalt.org/about-the-eden-alternative Accessed 02/04/2012
Goldsmith, M. (2004) In a Strange land...People with dementia and the local church: a guide and encouragement for ministry 4M publications, Southwell
Killock, J. (2004) Dementia, identity and spirituality in Spirituality of Later Life, on Humour and Despair Ed. MacKinlay E. Binghampton NY Harworth Pastoral Press, p 59-74
Kitwood, T. (1997) Dementia re-considered: the person comes first. Buckinghamshire Open University Press,
Ministry of Social Development (2001) Positive Ageing Strategy Accessed 02/04/2012
Ministry of Health (2002) Health of Older People Strategy Accessed 02/04/2012
Ministry of Health (2001) Palliative Care Strategy Accessed 02/04/2012
Post, S. (1995) The Moral Challenge of Alzheimer Disease, Baltimore, John Hopkins University Press.
Post, S.(2006) Respectare: moral respect for the lives of the deeply forgetful in Dementia: mind, meaning and the person Ed. J.Hughes, S. Louw & S. Sabat, Oxford, Oxford Medical Publications pp.223-234
Saks, J. (2002) in Goldsmith, M. (2004) In a Strange land...People with dementia and the local church: a guide and encouragement for ministry Southwell 4M Publications,
Verity, J. The Spark of Life Programme http://www.dementiacareaustralia.com/index.php/biography.html Accessed 02/04/2012