Writers with Dementia: the Interplay among Reading, Writing, and Personhood

Abstract

People with dementia have eloquently described their experiences with written language. Most professional discussions of Alzheimer’s disease and related dementias mention losses in reading and writing skills, while simultaneously commenting that maintaining these activities is good exercise for the brain. In this chapter, we consider how people with dementia make use of reading and writing activities to enhance memory, satisfaction, self-esteem, and interpersonal communication. Then we review empirical findings and lived experiences concerning declines in reading and writing abilities during the progression of Alzheimer’s disease and other related dementias. Strategies for coping with these losses are featured next. We conclude by emphasizing the learning, courage, and creativity involved in maintaining one’s sense of self in dementia and the role of reading and writing in that process.

Although my body may still be sputtering along, the day will come when I can no longer write a clear sentence and tell a coherent story. That day will be the actual time of death. The person in me who lives on until natural death occurs is only a shadow left by the deadly laugh of Alzheimer’s.

(DeBaggio 2002: 117)

I used to love to read science articles and thick literature novels and non-fiction. I find reading difficult now, but think it is important to keep these skills up. And so I try to read simple stories with clear descriptions that produce strong pictures in my mind, or writing that is very beautiful or humorous.

(Truscott 2003: 15)