Dementia, Responsibility, and Identity
In Alzheimer’s disease there is the loss of the personality, a diminished sense of self-worth. A highly productive person has to wonder why he is still alive and what purpose the Lord has in keeping him on this earth. As I struggle with the indignities that accompany daily living, I am losing my sense of humanity and self-worth. Blessed is the person who can take the Alzheimer’s patient back to that happier time when they were worthwhile and allow them to see the situation in which they were of some use.
—Robert Davis, My Journey into Alzheimer’s Disease
For me now, any question of identity becomes profound and difficult. Without memory you lose the idea of who you are. I am struggling more than ever to find answers to questions of identity. I am flooded with early memories preserved in protected places in my brain where Alzheimer’s does not reign supreme. These memories become the last remnants of my search for who I am.
—Thomas Debaggio, Losing My Mind: An Intimate Look at Life with Alzheimer’s
Some major psychiatric disorders can change the central core of a person. This raises acutely the problem of the boundary between the person and the illness. There are questions about where the boundary comes between medical treatment to cure an illness and interventions to change someone’s character and personality. The boundary between the person and the illness is also important for decisions about responsibility. It seems unfair to blame people for things coming directly from illness.
When a psychiatric or neurological disorder seems to take over and distort an individual’s whole personality and character, how should we respond to what they do?
Frontotemporal dementia involves some major changes not typical of other dementias. At the mild end are breaches of etiquette and other social norms. More serious are emotional blunting, loss of empathy, and loss of the inhibitions that normally check bizarre or antisocial behavior. People with frontotemporal dementia tend not to feel remorse. In contrast to the standard account of antisocial personality disorder, though, they are rarely manipulative or given to deception.1
One man in his sixties had changed over four years. He showed less concern for others, intruded into people’s offices, butted into their conversations, and would eat indiscriminately (including garbage). He stopped taking showers. He hoarded things and filled his pockets with restaurants’ napkins and sugar. For the first time in his life he began stalking and trying to molest children. He was arrested for exposing himself to children. He could describe in detail what he had done and agreed it was wrong and harmful.
A man in his fifties had changed over two years. He started to laugh inappropriately. He became emotionally detached. He did not react to the death of his mother or visit his wife when she was in the hospital. He became disinhibited—without embarrassment blurting out distressing comments, belching, or being partly undressed in front of others. When driving he struck a van with passengers in it, but drove on. He could describe what he did, and knew hit-and-run driving was wrong, but said he did not feel a need to stop at the time.2
Such cases bring out the difficulty any legal system still using only the M’Naghten criteria for responsibility would have in responding adequately to crimes committed by people with frontotemporal dementia. Quite apart from the evidence of brain atrophy, clearly these two men have recently developed character-disrupting psychiatric problems. Treating them as fully responsible for their acts would be bizarre. But it is hard for a M’Naghten-based system to avoid doing so. Do they know the nature and quality of their acts? They can describe them clearly, together with their consequences. Do they know that molesting children or hit-and-run driving are wrong? They each admit the wrongness of what they did. Under the M’Naghten rules, recognizing diminished responsibility would depend on stretching the word “know” to include an emotional awareness of the seriousness of the acts. It is not clear that M’Naghten-based systems would allow that stretching.
On the other hand, some might hold such people fully responsible. Accepting or rejecting an excuse is largely about how much an apparently bad action does or does not reflect the person’s character. Excuses protect a person’s character by disconnecting it from objectionable actions. So it seems strange to accept the excuse that psychiatric disorder has made someone’s character worse. Does not this mean that the person’s present character is open to precisely the criticism the objectionable action suggests?
People often change radically. They have religious conversions. They may change partners and jobs and emigrate. They take up drugs or enter convents. Any of these upheavals may change character sharply. But the immigrant or the nun are still praised or blamed for what they do. The new actions flow from the new character and personality. It is still appropriate to evaluate the person on the basis of what they do. Normally, with a kind of Aristotelian common sense, we do hold people responsible for their characters. Despite being newly acquired, the novice nun’s piety and the immigrant’s new patriotism still come into our picture of them. So why should a new willingness to molest children, shaped by dementia, be different?
Those who have to live with this behavior mainly do see it as different. Where a medical condition causes this kind of radical transformation, they see it in terms of the illness rather than the person. They may suggest (with varying degrees of literalness) that his very identity has been affected: “He isn’t the man I married.”3 Blaming the person may show a lack of understanding.
It is not just that the original person has changed. We have seen some limits to Aristotle’s view that character comes from habits, in turn coming from freely chosen actions. It does not do justice to the pressures often behind the slide into addiction. It fits dementia even less well. The nun’s piety or the immigrant’s patriotism come from upheavals they freely chose. But dementia is not the intended result of anyone’s choices. So this disaster, although internal to the person’s body, is seen as striking from “outside.” The urge to blame is rightly checked.
Do you understand I am not dying, just disappearing before your eyes?
—Thomas Debaggio, Losing My Mind: An Intimate Look at Life with Alzheimer’s
To some extent others—family, friends, and caregivers—can support the person’s identity. They often know what the person cares about. Dr. Catherine Oppenheimer describes a patient with dementia, lonely after losing her husband, and frightened. This patient called the emergency services a dozen times a day. She stubbornly fought attempts to persuade her to leave her home. Buying the house and making it a home had been a shared project with her husband: “To leave her home would have meant finally losing her husband and herself.”4
Protection of identity can come from understanding, and from supporting attempts to communicate. Jennifer Radden cites the kind of undramatic everyday support that makes a difference. A man (J) with dementia was leaving his house. Where he was going his shabby, worn, and unmendable couch might put people off. But it was laden with memories: he had repaired it and had shared it with his dog. Should he take it with him? When he tried to decide, he “wavered and hesitated, forgot, remembered, and began over, entirely unable to keep in view all the factors and their respective weights.” To help him with his decision, his two adult daughters held on to the different strands of the problem, giving him each strand as it was needed. Jennifer Radden says this recognition (of such things as his ability to repair furniture, his feeling for the dog, and his hopes for his new home) in turn supported these parts of his identity.5
When a medical condition brings about a radical transformation of someone’s character, we are inclined to say, “It is not him but his illness.” Whether or not this thought is accepted affects the relationship. Aggression that seems to reflect the person is resented. If it reflects only the illness, we may be more detached. But the boundary between the person and the illness is often elusive.
Even where someone with severe dementia acts most of the time in quite uncharacteristic ways, the question of how much of the original person is left may be complicated. People are more than their deliberate actions. Iris Murdoch wrote, “When we apprehend and assess other people we do not consider only their solutions to specifiable practical problems, we consider something more elusive … their total vision of life, as shown by their mode of speech or silence, their choice of words, their assessment of others, their conception of their own lives, what they think attractive or praiseworthy, what they think funny … what, making two points in the two metaphors, one may call the texture of a man’s being or the nature of his personal vision.”6
Toward the end of her life, Murdoch herself developed Alzheimer’s disease. Her husband, John Bayley, described its severity: “The power of concentration has gone, along with the ability to form coherent sentences, and to remember where she is or has been. She does not know she has written twenty-seven remarkable novels, as well as her books on philosophy; received honorary doctorates from the major universities; become a Dame of the British Empire.”7 She started to ask many anxious, repetitive questions that faded out in midsentence. Bayley found her questions often hard to interpret: “At such times I feel my own mind and memory faltering, as if required to perform a function too far outside their own beat and practice.”
It is humiliating to give up our areas of responsibility. There is a distinct feeling of the loss of self and all that we have been. Yet all is not gone.
—Robert Davis: My Journey into Alzheimer’s Disease
In interpreting dementia, it is important to avoid the tempting metaphors that describe someone as a shell, a husk, or being gone, by which we remove people from moral significance.
—Stephen G. Post, The Moral Challenge of Alzheimer Disease
The thought that someone is quite gone can be mistaken. Sometimes Iris Murdoch was able to say something grimly appropriate, as that she was “sailing into the darkness.” Even under these adverse conditions, John Bayley found that they still had a kind of communication: “like underwater sonar, each bouncing pulsations off the other, and listening for an echo.” And he noted the need “to feel the unique individuality of one’s spouse has not been lost in the common symptoms of a clinical condition.”
Bayley was able to say, “Iris remains her old self in many ways.” His account suggests that those ways had to do with the “something more elusive” about which she herself had written: the texture of her being, and especially what she thought funny. Speaking of times when he could not understand what she tried to convey, Bayley said, “The continuity of joking can very often rescue such moments. Humour seems to survive anything. A burst of laughter, snatches of doggerel, song, teasing nonsense rituals once lovingly exchanged, awake an abruptly happy response, and a sudden beaming smile … Only a joke survives, the last thing that finds its way into consciousness when the brain is atrophied.”
Even in quite severe dementia, there is often something of the original person. But the blankness can grow. At a late stage of her illness, Iris Murdoch would pick up from the street old candy wrappings, matchsticks, and cigarette ends. Indoors, she made and rearranged piles of clothes, books, stones, cups, and shoes. Sometimes she was “silently scouring the house, or on the rampage downstairs, drumming on the front door and shouting to the outside world ‘Help me—help!’ ”8
Before the illness, the Iris Murdoch who wrote so well about the texture of a person’s being or the nature of a personal vision would not have thought any of this hoarding and turmoil was hers. None of it comes from any conscious self-creation. It did not even come about in the less conscious Aristotelian way, through the ossifying of freely chosen actions into habits and then character. It came from atrophy of the brain. The lack of any element of self-creation is the main reason why the behavior reflects the illness and not the person. Through self-creation the person we become reflects our own values. We do not do things intended to bring on dementia. This disaster comes “from outside” in that it is not under our present or past control. The piles of stones, cups, and shoes reflected the illness, not the real Iris Murdoch.