The Experience of Dementia Dolores Colgan, MSW, LCSW
Published in Nassau Newsnotes, Winter 2011. New York State Society for Clinical Social Work, Inc.
Every day I learn something new about how her personality was shaped. She often perceives herself as a little girl now experiencing the present from her 8 or 10 year-old self. During a brief hospital stay, she was weighed and measured. Though she has no recall of the hospitalization, she comments very somberly that the only thing wrong with her is that she is too short. I laugh but take her seriously knowing she feels diminished from having been teased about her height as a child. I reassure her that she is petite and beautiful.
My mother was diagnosed with Alzheimer’s disease six years ago, late in her life, and its progression has been slow. Though she may not always remember my name, or that she lives with me, she still shows concern. She worries her family does not know where she is and wants to call home to reassure them she is okay. She says something 'unusual' is happening to her. She speaks phrases in Italian she hasn't used in years.
I get glimpses into her young self, social and family life: expectation of leisurely meals, romantic times reflected in the 1930s song lyrics she sings, interest in appearance and self-care. A loss of memory and higher reasoning has not changed her core personality or joy in life’s simple pleasures.
In Forget Memory (2009), Anne Davis Bastings addresses the question of how our fears of dementia and aging shape and are reinforced by scientific, medical, social and economic forces. Others including Stephen Sabat (2001) Hughes, Louw and Sabat (2006), Tom Kitwood (1997) and Stephen Post (1995) have expressed this social constructionist view that holistically thinking social workers are likely to embrace.
At a recent caregiver conference, Teeper Snow, dementia care expert and educator (you can catch her on You Tube) demonstrated symptoms of different types of dementia. She explained that dementia is an umbrella term for as many as 60 different types of dementia including the most prevalent ones -- Alzheimer’s disease, Vascular, Lewy Body and Frontal Lobe dementias. No one experiences dementia in the same way and chemical as well as physical brain changes are responsible for emotional and behavioral fluctuations.
To help clients with dementia and their families cope, we need to be aware of our own fears of cognitive impairment and learn as much as possible about particular dementias. We help well when we understand our multi-dimensional clients within the context of culture, relationships and societal preconceptions.
Dolores Colgan, MSW, LCSW helps patients and caregivers cope with illness and complex life issues. Her website is www.counselingforhopeandchange.com. She serves as treasurer for the Nassau Chapter of NYSSCSW.
Bastings, A. D. (2009). Forget memory: creating better lives for people with dementia. Baltimore, MD: Johns Hopkins University Press.
Hughes, J.C., Louw, S.J. & Sabat, S. (Eds.). (2006). Dementia: mind, meaning and the person. Oxford University Press.
Kitwood, T. (1997). Dementia reconsidered. Buckingham, UK. Open University Press.
Post, S. (1995). The moral challenge of Alzheimer’s Disease. Baltimore, MD: Johns Hopkins University Press.
Sabat, S. (2001). The experience of Alzheimer’s Disease. Malden, MA: Blackwell.
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