Academic journal article The Qualitative Report

Picturing Leisure: Using Photovoice to Understand the Experience of Leisure and Dementia

Academic journal article The Qualitative Report

Picturing Leisure: Using Photovoice to Understand the Experience of Leisure and Dementia

Article excerpt

In a growing body of research investigators are exploreing the experience of dementia from those living with the disease (e.g., Beard, 2004; Beard, Knauss, & Moyer, 2009; Clare, Rowlands, & Quin, 2008; de Witt, Ploeg, & Black, 2009; MacQuarrie, 2005, Phinney, 2006). In these studies, the researchers frequently collect data using qualitative interviews and participant observation (e.g., Beard, 2004; Hubbard, Downs, & Tester, 2003; Nygard, 2006; Phinney, 1998; Phinney, Chaudhury, & O'Connor, 2007). These methods have been particularly fruitful in exploring how persons living with dementia experience their symptoms and how they manage daily life with memory loss. However, as communication can change with dementia, finding alternative ways to research the lived experience of memory loss becomes increasingly important.

This emergent body of knowledge focusing on the experiences of persons living with memory loss stems from Kitwood's (1997a) personhood approach to dementia. Personhood was developed as a counterdiscourse to the biomedical approach, which focuses on neuropathology, thereby neglecting the perspectives of those living with memory loss. The personhood paradigm resulted in a change in the way we think about dementia, leading to research that includes persons with dementia, rather than only relying on proxy voices from formal and informal care providers. Kitwood's reconceptualization of dementia was motivated by the desire to improve the lives of people living with dementia (Morton, 1999). Defined as "a standing or status bestowed upon one human being by others in the context of the relationship" (Kitwood, 1997a, p. 8), personhood acknowledges both individual values and possibilities for improving quality of life (Li & Orleans, 2002). According to Kitwood (1997a), personhood aims to include "... a richer range of evidence than the biomedical model ... it provides a rationale for an approach to care that looks to more human than to medical solutions" (p. 2).

Kitwood (1997a) argues that personhood should be linked to feelings, emotions, and the ability to live in relationships. Recognition of the essential unity of all human beings regardless of differences in mental capabilities is vital to personhood. Personhood can be maintained for individuals with dementia by enabling choice, using remaining abilities, through expression of feelings, and by living in the context of relationships (Kitwood, 1997a).

In developing personhood, Kitwood drew upon Buber's (1937) "I-Thou" perspective (Kitwood, 1997a; Morton, 1999). Buber contrasts "I-It" relationships with "I-Thou" relationships. I-It relationships are characterized by detachment (Kitwood, 1997a). I-Thou relationships imply "going out towards the other; self-discovery, spontaneity ..." (p. 10). I-It relationships are ordinary and trivial, but I-Thou relationships rise above that, to include not only anxiety and suffering, but also fulfillment and joy (Kitwood, 1997a). Kitwood's approach to dementia calls for a move away from relating to persons living with dementia in the I-It mode to relating to them in the I-Thou mode, where the person is met with openness, tenderness, presence, and awareness. It is Kitwood's (1997b) belief that I-Thou relationships replenish personhood, which involves lowering our defences and allowing our true feelings to show.

As a result of the I-Thou-inspired personhood movement, we are beginning to understand the meaning of daily activities and occupations, including leisure. Literature suggests that leisure participation may be relevant to the experience of dementia (Beard et al., 2009; MacRae, 2010; Phinney et al., 2007) and important for maintaining identity and nurturing personhood for those living with dementia (Genoe, Dupuis, Keller, Schindel Martin, Cassolato, & Edwards, 2010; Genoe, 2009; Genoe & Dupuis, 2011; Murray Alzheimer Research and Education Program (MAREP), 2011). …

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