Session 8A: Decline and Renewal

1st Global Conference

Friday 3rd July – Saturday 5th July 2009
Mansfield College, Oxford

Addressing the experience of the self in dementia from philosophical, psychological and neurological perspectives can enhance our understanding of the illness as well as our appreciation of the interests of each discipline in approaching the concept of the self in the course of a life.

Since the seventeenth century modern philosophers have looked into the development of the self. Descartes referred to cognition, Locke brought up consciousness and Hume emphasized the importance of bundles of sense data as factors necessary for concept of the person. Kant suggested people were born with basic categories of space and time on which are grafted individual experience. Subsequent inquiries have included hypothetical examples for their positions but tend to ignore the actual experience of people over their life span, particularly those with dementia and other disorders of the experience of the self.

Meanwhile twentieth century theories of psychological development have emphasized the life process as a series of stages each with a unique conflict that must be mastered for the person to move on. Emotional growth depends on a capacity for insight and self- regulation. Implicit in the process is the assumption that someone with a cognitive disorder would be less likely to be able to master the developmental task and so would be deficient in many aspects of personhood. Society monitors consent and autonomy in these individuals who may not be competent to make decisions about their own lives.

Dementia is a unique illness in that it affects temporal, physical and psychological aspects of the self. Disorders of the experience of the self can be divided into two groups. The first group reflects the development of a sense of personal identity over time and asks what factors are necessary for a person to retain a sense of self. Personal identity depends on establishing spatio-temporal continuity and then remembering points along the continuum. Dissociative identity disorders are most representative of this group of time-based disorders. In dementia a person gradually loses the memories that form the basis of a subjective sense of self. Early in the illness a person may be aware of the loss or may have anosognosia which can be seen as a form of self-deception different from limited insight or denial.

Spatial disruption of the self can be seen in the experience of the uncanny or in derealization/depersonalization processes. In the former we sense that something is not right but we have difficulty articulating why this is so, while in the latter we can feel a disconnect between ourselves and the world or within ourselves. These spatial disorders address our perception of the world and our place in it. In dementia people experience apraxias and misidentification syndromes like Capgras and Fregoli, and so neither acknowledge physical limitations nor recognize people close to them.

Late-life dementia highlights aspects of the meaning of the self. The course of the illness highlights the necessary and sufficient criteria for personhood philosophers have brought up for centuries. Their continued debates bring a better understanding to the difficulties caregivers face when they are reminded that their patient is a person. Even more so we can appreciate the despair people feel when they sense they no longer have the capacity to live the same life. They are asking are they still themselves.

Intimacy among the Socially Dead: Examining Intimacy among Institutionalized Elders with Mid to Late Stage Dementia
Johanna Wigg
Bowdoin College, Brunswick, Maine, USA

This paper explores intimate relations between elders living with dementia in long-term care settings. By intimate relations, I am referring to holding hands, cuddling, touch, as well as loving relationships lasting months or years. With elderly populations expected to double over the next twenty years, the number of elders living with dementia and requiring the services of long-term care will also rise. The paper’s theoretical framework contrasts views of dementing illness as a social death sentence with observational data suggesting evidence of rich, intimate relations between elders living with mid to late stage dementia in long-term care settings. The data suggests demented residents experience a simultaneous social death and life. While family and friends may distance as the disease progresses, peers living with similar cognitive challenges may engage in intimacy within the long-term care environment. The data challenges the loss of personhood, related to social death. Shorter time frames, lack of past recollection and limited use of language are unique traits of the intimacy examined in this paper. The data was collected through seven months of observation at a large-scale nursing institution and ten years of participant observation at a small, homelike facility.

Download Draft Conference Paper (pdf)

Re-Writing the Myth of Women and Aging
Barbara Flood
Women’s Wisdom Emerging Inc. Bailey, CO, USA

The cultural myth of the Western World prior to World War II held that women were generally not financially or socially independent nor did they desire to be so. Women were regulated to the duties of the home not the world. Women who were independent were referred to as ‘Spinsters’ or ‘Old Maids’. Women as they aged were generally invisible, regulated to caring for the grandchildren offering basic child care. Women had lost their place as spiritual wisdom keepers and were no longer consulted when important decisions were made, politically, spiritually, financially, either within families or within communities. The onset of Feminism challenged that myth and created a cultural conversation addressing the contribution of women in all areas of life. Our aging process as women can not be exempt from this conversation. This presentation will offer anecdotal research from both individual and group conversations/interviews with women in the US and Europe that explores the origination of the myth, the responsibility of the spiritual elder/crone, and the legacy of a generation inspired by the cultural onset of feminism.

Download Draft Conference Paper (pdf)