Approximately five million people in the U.S. have some degree of dementia, a number assured to increase with the aging population. Dementia is sometimes mistakenly considered to be one disease, but it includes Alzheimer’s disease, vascular dementia, Lewy body dementia, alcohol-induced dementia and others. Dementia is the most common reason driving placement in nursing homes, costing taxpayers in excess of 226 billion dollars this year.
Dementia is not just a set of symptoms; it describes a particular way of being that has cultural significance. To become deeply forgetful and intellectually vulnerable within a Western culture prioritizing intellect over other human aspects has a deeply negative meaning.
The medical model of dementia defines and catalogues patients as having a conceived set of deficits, malfunctions and losses. This definition can result in a malignant social positioning that impacts the way society approaches patients, potentially depersonalizing them through assignment of inaccurate definitions. Once a person is positioned socially as representative of a diagnostic category, his or her essential humanity and social persona beyond that of a burdensome patient becomes obscure. It may become erased.
Steven Sabat, a Georgetown University professor of psychology, and Tom Kitwood, a pioneer in the field of dementia research, have challenged the standard story of dementia. They view the disease as relational and social as much as it is neurological.
Sabat persuasively asserts: “the neurology of dementia doesn’t destroy the self. Any dissolution of the self reflects a dissolution of community.” Real distancing occurs in the relationship with the person in dementia. Visits become difficult and rare when a person no longer recognizes a loved one. However, it isn’t the patient doing the distancing; his or her community is to blame.
Maintaining the self is dependent upon a relationship with a community. If we limit the stories we tell about dementia to negative ones- a collection of defects- we remove the person from their personhood. The community must consciously will to keep the person alive, the true nature of love, and reinforce that it is good that he or she exists. Most importantly, communities must be the rememberers of patient stories.
Our culture is one in which clarity of mind and economic productivity determine the value of human life. Our hyper-cognitive society assigns moral and social significance to such traits as intellect, reason and rationality. Herein lies the danger when we begin to distribute scarce financial resources.
Dementia is the only cause of death in the top ten diagnoses that cannot be prevented, slowed or cured. This ”no light at the end of the cost tunnel” then calls upon clinicians and policy-makers to consider the social justice principle of bioethics, requiring the fair allocation of scarce financial resources.
If communities dissolve their relationships with a population that is not valued, and dementia patients have forgotten who they once were- who will be their voice and assign them worth? If physicians are legally permitted to assist in suicide or euthanize, what pressures will they face to ascribe scarce resources to the acute needs of hyper-cognitive persons versus the chronic custodial care of the demented?
Philosophers such as Peter Singer believe that sufferers who have lost both their sense of identity and their personhood have lost their right of moral protection. Such theorists endanger the future of the vulnerable. Is assisted suicide or euthanasia their solution for a burdensome population?
John Swinton’s book, Dementia: Living in the Memories of God, beautifully describes alternatives to the medical model of dementia. His theological perspective calls upon the willful love of communities, such as churches, to exert a conscious effort of determination and intentional desire to be with the other- no matter what.
Swinton sensitively queries, “am I still me when I have forgotten who I am?” The rememberers of the story are crucial to those suffering from dementia. If there is dissolution of community, the consequences could be lethal. Does social justice require that we focus our resources on persons who can tell their own story? Or can we count on our moral community to remember the stories for those who cannot?