Presented at the National Conference of the Alzheimer's Association Australia in Canberra, March, 2001
(Edited by Friedell in 2004)
This paper looks at dementia from the perspective of the person receiving this devastating diagnosis. It argues that the manifestation of dementia is dependent on more than just brain pathology - our psychic resources, our social context and our spirituality are equally important. From this perspective, the authors argue that the trauma of diagnosis can be regarded as analogous to "bone-pointing" in Aboriginal culture. The terrorised victim sickens and eventually dies. The family of the victim may also exhibit dysfunctional behaviour. Either it denies a problem exists, depriving the person of social support, or it adopts the mantle of "carer", depriving the person of functionality at an early stage.
The paper moves on to challenge the mindset of inevitable decline, where the victim of a diagnosis of dementia expects and plans for a steady renunciation of activities. The authors propose an alternative view - of building a new life in the face of some cognitive difficulties, involving creative change and courage on the part of both the person and his or her family. This will involve holistically evaluating the person's psychic resources. Then a diagnosis of dementia becomes the beginning of a journey towards emotional, physical and spiritual healing.
The concept that dementia is simply the result of brain pathology has been described as leading to "therapeutic nihilism" - ignoring the emotional suffering and subjective experience of the dementia sufferer and their place in a social world (Cheston & Bender, 1999, p. 77). Indeed there is little evidence of a direct relationship between damage to specific parts of the brain and particular clinical symptoms, and there are only moderate correlations between degree of dementia and overall brain pathology (e. g., Kitwood~ 1995; Cheston &. Bender~ 1999).
Kitwood's (1995) interpretation of dementia as a psychological response to brain damage allows us to consider the impact of our past life on our dementia~ and implies that a person who can draw on pre-morbid psychological strengths may better deal with neurological damage. Simplistic approaches to such an assumption must be avoided however. The authors know a woman with pre-morbid psychopathology who survived an abusive childhood through developing dissociative identity disorder. This helped her to maintain an unusual degree of resourcefulness and multi-tasking after a diagnosis of dementia. We argue that our psychic resources, with or without any underlying psychopathology, are the key to our ability to cope with the challenge of dementia.
Kitwood regards our social context as a critical part of how we cope with dementia and the impact of the diagnosis (Kitwood, 1993, 1995). His work draws on that of Martin Buber, who saw personhood as arising from interaction with others and expressed in 'I-Thou' relationships which involve our whole being.
We consider our spirituality to be important in maintaining personhood in dementia. In the face of declining cognition and increasing emotional sensitivity spirituality can flourish as an important source of identity. The self can be given meaning as a transcendent being, beyond the transient worldly difficulties of neurological impairment.
Our sense of self is shattered, and can be restored in relationships. If we have supportive - yet not stifling - response from others, then like other trauma survivors, this may 'mitigate the impact of the event' (Herman, 1997, p. 61). However, interpersonal relationships have often been irrevocably altered by the diagnosis. We have become the 'victim' and our family has either become the 'denier' or 'carer'. The 'carer' role encourages learned helplessness as a primitive defence mechanism. We give up because of a fear of failure, and our carer 'takes over'. Learned helplessness exacerbates our manifestation of dementia, and allows us to become susceptible to the 'bone pointing' of a dementia diagnosis.
The first signs of our dementing disease are often seen in times of unusual stress, and long before diagnosis we typically withdraw from challenging situations. Even a person with a normal brain who for some reason habitually avoids challenges (e.g. perhaps because of the threat of restimulation of traumatic memories) will tend to become progressively more threatened by challenge, and move into a downward spiral of increasing use of avoidance as a defence against failure. This leads to learned helplessness, where we allow others to take over our functioning and we 'forget' how to do it ourselves.
We experience our neurological impairment and cognitive decline as chronic trauma, and develop the adaptive responses seen as dementia. The trauma begins at the earliest signs of the disease, with increasing struggle in everyday life. The diagnosis of dementia is the confirmation of suspected losses, and has a toxic power analogous to that of 'bone-pointing' in Aboriginal culture. It generates extreme fear of further loss. We experience a defeat of spirit and hope. The medical prognosis is believed - there is nothing that can be done, all that lies ahead is inevitable decline.
This is a further assault on our sense of self, in particular from dread of the future. We are experiencing existential fear, and a threat to fundamental self-object relations on a continuing basis. A key emotional reaction in dementia is 'existential terror' (Cheston & Bender, 1999, p. 155). (Though in some cases diagnosis brings relief from self-blame or the fear one is "going crazy," we maintain that it nevertheless can be understood as traumatic.)
It is at this point that our psychic resources are important in how we will continue to experience this label of being a victim of dementia. Will we accept or deny it? Will our families accept or deny it?
If our family accepts the diagnosis and adopts the role of 'carer' in this dysfunctional social context we exhibit learned helplessness. This augments our predisposition to experience the diagnosis as 'bone-pointing'.
If our family denies the diagnosis, another dysfunctional social context arises - that of victim and denier. We maintain a shell of normalcy, rather than deal with the deeper issues. We accept our family's covert message - dementia is too dreadful to be constructively dealt with.
Both of these dysfunctional social contexts lead to chronic trauma, where the initial threat to self and the lack of appropriate social support mean we may lose trust in ourselves, in others, in God (Herman, 1997, p. 56). Our self-esteem is diminished, there is the humiliation of having dementia, and the feeling of helplessness to do anything about it- There is no cure, and we experience intense feelings of need and fear, compromising our capacity for intimacy. The identity we had prior to diagnosis is destroyed, just as in chronic trauma.
The 'bone has been pointed'. Now we await the inevitable outcome. As victims of a social context in which our family is either 'denier' or 'carer', we interpret each experience as evidence of irreversible decline. We must either cover up, to maintain normalcy for our 'denier', or give up, to allow our 'carer' to take over. There is no talk of rehabilitation, of regaining lost function - nor even of retaining current function. Either our family denies there is a problem, and we must struggle alone with our existential dread, or it adopts the mantle of carer, stripping us of functionality.
We either struggle to cover up our confusion or give up more and more activities. We either accept the identity of normalcy - papering over the widening cracks - or we accept the identity of victim - withdrawing into learned helplessness. Neither pretence nor withdrawal is constructive, as they both fail to address the challenge of dementia--creating a new future within our changed capacity .
The metaphor of "pointing the bone" suggests concepts of intervention. Just as with survivors of other traumas (e.g., incest or torture), we and our family need a supportive environment in which to be challenged in regard to our dysfunctional beliefs and defensive behaviours.
Should we accept that we no longer have any neuro-plasticity, that we can no longer restore any function? Why do we rule out rehabilitation for dementia yet. consider it for strokes? Is this a psycho-social phenomenon that we - the victims and our carers, as well as professionals and the medical profession - are all captured by?
What if we could regain lost function? What if we could throw
off the role of victim? What of we could stop pretending., and
address the challenge of dementia?
For maximal therapeutic impact the survivor has to live a vivid and dramatic contradiction to the toxic lie-- the lurid metaphor of "exorcism" captures this thought.. A beautiful example is the case report of rehabilitation of a head-injured Israeli soldier with severe frontal symptoms -- he was immersed in an elaborate psychodrama of Biblical intensity (Prigatano and Ben-Yishay, 1999).
Learned helplessness can be overcome by guiding us to simple therapeutic behaviours where failure is unlikely, but which are set in a context of empowering meaning. These activities would be given large and deep positive resonance in an interpersonal and social context (e.g., Rosa Parks keeping her seat on the bus in the American civil rights movement).
With trembling hand we can open the door to a wider world of possibilities. No longer enclosed in our prison of being a helpless victim or hopeless pretender, we can find a new identity as a survivor. Our family is released from a role as 'denier' or 'carer' and can walk alongside us as we rediscover who we can be with dementia.
Three overlapping phases of rehabilitation are recovery of function, validation of pain, and the discovery of a "survivor mission" (Friedell, 2001). Martin Luther King, Jr - spoke to black Americans who suffered from "a degenerating sense of nobodiness". We persons with dementia know what that's like. He inspired them to a mission: '..If you will protest courageously and yet with dignity and Christian love, when the history books are written in future generations, the historians will have to pause and say: there lived a great people-a black people-who injected new meaning and dignity into the veins of civilization. "
Our presence here is part of our own survivor mission. On the one hand we are bearing witness to our faith - Christine as a Christian and Morris as a Jew. On the other hand we are working toward a world where not only persons with dementia, but also all persons who are disabled, or weak, or poor will be given the resources, hope and dignity they deserve. And in so doing we are contributing towards our own healing.
We suggest that the physical healing of our dementia is not as important as our emotional healing, in which we are restored in our relationships with others and are able to address past. and present issues holistically and realistically. Our spiritual healing is the most valuable, as it lets us search for final meaning and to transcend loss (Boden, 1998; Frankl, 1984).
Our vision is for a future in which dementia, the dreaded "D" word, has lost its toxic power to create 'deniers', carers' and 'victims'. In this utopia we seek out diagnosis as soon as the first signs of memory loss and confusion appear, immediately receive anti-dementia drugs which restore some cognitive function, and begin a rehabilitation program. We receive appropriate social support from our families to address these challenges, and together accept some difficulties, but courageously build a new life, achieving spiritual, emotional and physical healing.
This healing occurs in a world that has moved beyond what Post(2000) has called the "hypercognitive" towards a focus on relationships. In today's world of global capitalism, successful people are those who rapidly process symbols in a competitive, emotionally sterile environment. In the new millennium we imagine a realization of the importance of relatedness -- between people, to the land and with the divine. When relatedness becomes more important than cognitive prowess the stigma of dementia will be removed.
Alzheimer's Associations around the world should aspire to a new paradigm --dementia survival with dignity. We and our families need your support to risk moving away from a dysfunctional social context of 'denier', 'carer', and 'victim.' We need to find a new identity that is not cast by any role held before diagnosis, nor is a product of pretence at normalcy or withdrawal into learned helplessness.
By making our presentation at this Conference we are claiming our full participation in cultural life, and thus making a stand for all persons with cognitive limitations. This is a move toward transforming our culture toward one honoring human dignity, or (in spiritual terms) humankind as created in the divine image.
Australian National Advisory Committee for UNESCO (1973). Australian Aboriginal Culture, AGPS.
Boden, C. (1998) Who will I be when I die? HarperCollins, Melbourne.
Cheston, R. and Bender, M. (1999). Understanding Dementia, Jessica Kingsley, London.
Frankl, V.E. (1984) Man's Search for Meaning, Touchstone, New York.
Friedell, M. (2001) Dementia Survival--A New Vision
Herman, J. (1997). Trauma and Recovery. Basic Books, New York.
Kitwood, T. (1993). Person and process in dementia, Int. J. Geriatric Psychiatry, 8 (7) 541-545.
Kitwood, T. (1995) A dialectical framework for dementia. In Woods, R. T. et al. (eds.), Handbook of Clinical Psychology of Ageing, pp. 267-282.
Post, S. G. (2000). The Moral Challenge of Alzheimer's Disease, 2nd ed., Johns Hopkins University Press.
Prigantano, G. and Ben-Yishay, Y. "'Psychotherapy and Psychotherapeutic Interventions in Brain Injury Rehabilitation," in Rosenthal, M. et al., Rehabilitation of the Adult and Child with Traumatic Brain Injury, 3rd ed. Philadelphia: Davis, 1999.