Chapter 2 Living with Someone both Here and Gone: Trauma and Dementia
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Abstract
Globally, the World Health Organization estimates that more than 35 million people are living with dementia; that number will triple by 2050, making it a public health priority. As a progressive syndrome, dementia stresses the care recipient in insidious ways, but family and caregivers are also seriously impacted: formally in their role relationship with the parent or spouse, and physically and psychologically because of the emotional stress of caring for someone with Alzheimer’s or other forms of dementia. Pauline Boss argues that ‘dementia creates ambiguous loss,’ a loss for which ‘there is no possibility of closure’1 because the loss of the person you knew, and the relationship you had, comes and goes from moment to moment. For some caregivers the ambiguity and pre-death grief leads to post-traumatic stress. Since living with dementia prevents closure, this chapter turns to strategies for coping with the trauma of dementia. Three concepts coming out of the wrap-up session at the ttp 3 conference have special relevance to this project: (1) how ambiguity exacerbates the trauma for patient and family, (2) the role of repetition in manifestations of the disease and the stress felt by family and caregivers, and (3) how telling stories restores agency and thereby provides a way of responding to the trauma of dementia. Because storytelling bears witness to recovery from trauma and the narratives demystify the ambiguous loss of coping with dementia, I have included stories as a central mode of expression in this chapter.