IJE Advance Access originally published online on August 27, 2004
International Journal of Epidemiology 2005 34(1):36-39; doi:10.1093/ije/dyh146
| ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
IJE vol.34 no.1 © International Epidemiological Association 2004; all rights reserved.
Photoessay |
From doctor to ‘silly patient’: seeing beyond the disease label
Department of Sociology, Social Policy and Criminology, University of Stirling, UK and School of Social Work and Human Service, The University College of the Cariboo, Canada
Photographs and text by Wendy Hulko
This photoessay is based on a grounded theory study of the relationships between older people's experiences of dementia and the intersections of ‘race’, ethnicity, class, and gender, undertaken from September 2002 to August 2003 in Ontario, Canada. The research methods included interviews, participant observation, photography, and focus groups with eight older people with dementia, who were selected through theoretical sampling. Ethical approval was obtained from the relevant research and ethics committees; pseudonyms were self-selected by participants; and consent was negotiated throughout the research process, including consent to take photos at home and during the observation sessions, and to use them in publications arising from the research.
Presented here are the words and images of the two research participants who are former physicians (a cardiovascular surgeon and an internal medicine specialist). The selected verbatim quotes below, taken from individual interviews with ‘Julianna Molnar’ and ‘Jim Heather’, indicate a strong capacity for self-reflection and an awareness of societal attitudes towards ‘silly patients’. Their reflections may encourage other medical practitioners to see beyond the label of dementia.
The photographs that follow show ‘Julianna Molnar’ and ‘Jim Heather’ during the course of the research project—two active, engaged older people with dementia. These visual portrayals of everyday life with dementia may seem at odds with images of frailty and incompetence that are most often used to depict ‘silly patients’, such as those diagnosed with dementia.
|
‘I didn't know about Alzheimer's...I was a different type of medical doctor...I know well that at a certain age, there are certain things that are forgotten and your brain not working as it used to. For, at a certain level, at a certain level, I think it's normal but I don't feel good about it.’ Julianna Molnar
|
‘...and um I'm concerned about [my wife] um having the same feeling, you know is this going to be steep or shallow or what is it going to be and how is it going to affect both of us and what, what's, what um can we do or you know, you really feel that you've got no attack, from our point of view, to prevent what's going to happen.’ Jim Heather
|
‘I don't want to be completely stupid [laughs slightly]...But my memory is still good enough that I can...I can....I can keep...I can maintain...I can't say that it's not worth it to live.’ Julianna Molnar
|
‘I suggested that I felt that uh despite being on the board [of the local hospital] for three years, that I didn't want to be just a lamppost sort of standing in the, standing in the way of everyone.’ Jim Heather
|
‘It doesn't feel good that I can't remember certain things and I don't remember certain things that happened to me or when I was young. My memory has gotten worse quite a bit but I'm aware. But I'm aware.’ Julianna Molnar
|
Wendy (researcher): ‘Thank you. I really appreciate your taking the time to talk with me and to share your experiences.’
Jim Heather: ‘No I think that that was vital to get some idea of, more of what uh we silly patients are doing. So, uh, all the very best.’
Taken together, these representations—in words and images—of two former physicians living with dementia, and reflecting upon their changed social status, reinforce the need to see beyond the disease label to the actual person.
CiteULike 
Connotea 
Del.icio.us What's this?
| ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||