• Behind the stiff upper lip: war narratives of older men with dementia.

      Capstick, Andrea; Clegg, D. (2013)
      The concept of the stiff upper lip stands as a cultural metaphor for the repression and figurative ¿biting back¿ of traumatic experience, particularly in military contexts. For men born in the first half of the 20th century, maintaining a stiff upper lip involved the ability to exert high levels of cognitive control over the subjective, visceral and emotional domains of experience. In the most common forms of dementia, which affect at least one in five men now in their 80s and 90s, this cognitive control is increasingly lost. One result is that, with the onset of dementia, men who have in the intervening years maintained a relative silence about their wartime experiences begin to disclose detailed memories of such events, in some cases for the first time. This article draws on narrative biographical data from three men with late-onset dementia who make extensive reference to their experience of war. The narratives of Sid, Leonard and Nelson are used to explore aspects of collective memory of the two World Wars, and the socially constructed masculinities imposed on men who grew up and came of age during those decades. The findings show that in spite of their difficulties with short term memory, people with dementia can contribute rich data to cultural studies research. Some aspects of the narratives discussed here may also be considered to work along the line of the counter-hegemonic, offering insights into lived experiences of war that have been elided in popular culture in the post-War years.
    • Drawn from life: Cocreating narrative and graphic vignettes of lived experience with people affected by dementia

      Capstick, Andrea; Dennison, Alison; Oyebode, Jan R.; Healy, Lesley; Surr, Claire A.; Parveen, Sahdia; Sass, C.; Drury, Michelle (Wiley, 2021)
      Background: The growing literature on Patient and Public Involvement and Engagement (PPIE) and dementia identifies specific problems related to the influence involvement has on research outcomes, over-reliance on family members as proxies, and lack of representation of seldom-heard groups. Adaptations to the PPIE process are therefore needed in order to make possible the involvement of a broader spectrum of people living with dementia. Objective: To adapt the PPIE process in order to make participation in co-creation by people living with dementia accessible and meaningful across a spectrum of cognitive abilities. Design: Narrative elicitation, informal conversation, and observation were used to co-create three vignettes based on PPIE group members’ personal experience of dementia services. Each vignette was produced in both narrative and graphic formats. Participants: Nine people living with dementia and five family members. Results: Using enhanced methods and outreach it was possible to adapt the PPIE process so that not only family members and people with milder cognitive difficulties could participate, but also those with more pronounced cognitive problems whose voices are less often heard. Conclusions: Making creative adaptations is vital in PPIE involving people living with dementia if we wish to develop inclusive forms of PPIE practice. This may, however, raise new ethical issues, which are briefly discussed.
    • I'm wondering now if I'm the only person who remembers: using film and narrative biography to resist amnesia in dementia studies.

      Capstick, Andrea (2008)
      This study is grounded in my concerns, as a HE lecturer in Dementia Studies, about the difficulties practitioner-students face in writing reflectively about their work with people who have dementia. I introduced a short fiction film, Ex Memoria, into the curriculum, initially as a means of ascertaining whether the use of an arts-based approach would facilitate greater reflection among students more familiar with biomedical perspectives on dementia. The film attempts to convey the experiences of a woman with dementia, a Polish-Jewish refugee from wartime Poland, now living in a London care home. Twenty two students completed either coursework assignments or reviews based on the film. The findings suggest that the psychosocial perspective which underpins the Dementia Studies programme, and has been widely promoted as a corrective to the biomedical ¿standard paradigm¿ (Kitwood, 1997), itself contributes to the ahistorical and depoliticized positioning of people with dementia, their families, and professional caregivers. In conclusion I argue that the psychologisation of dementia has contributed to its academic marginalisation. A broader, more transdisciplinary approach is required; one which sets dementia in the context of 20th century history, and thus avoids the social amnesia (Jacoby, 1996) currently affecting dementia studies.