2.2.1 Dementia: a terminal condition
A central interest of this project lay in developing palliative care practices of RACF staff in caring for people with dementia. It is therefore important to consider the literature that supports the view that dementia is a terminal condition. It is accepted that on average people with dementia have a life expectancy of 7 to 10 years after diagnosis (Clark 2000; Wolfson et al. 2001; Larson 2004; Walsh et al. 1990; Warner & Butler 2000). There remains debate in the literature as to whether people die “of” or “with” dementia (Thomas et al. 1997; Burns et al. 1990; Whitehead & Hunt 1982; Molsa 1986; Olichney et al. 1995; Fabiszewski et al. 1990; Kammoun et al. 2000; Agüero-Torres et al. 1999). Nonetheless, as Small, Froggatt and Downs (2007 p.7) have pointed out, what is clear is that “dementia heralds a biological process leading to death”. Research that has reported on the characteristics of the dementia trajectory is important to this study as it provides compelling evidence highlighting the need for palliation.
2.2.2 Characteristics of the dementia trajectory
As already noted, research investigating the features of the dementia trajectory was limited at the commencement of this study. Mitchell et al. (2006) have pointed out a range of methodological limitations in the current body of literature. Most notable limitations include small sample sizes; retrospective analysis; samples restricted to hospital settings; and reliance on data from secondary databases/sources (Lamberg et al. 2005; Mitchell et al. 2004a; McCarthy et al. 1997; Lloyd-Williams, 1996; Ahronheim et al. 2000). Despite these limitations, a number of studies have been valuable in contributing to understanding the symptom burden experienced by people with advanced dementia.
Research (McCarthy et al. 1997; Mitchell et al. 2004a) has reported that individuals dying of dementia have symptoms and health care needs comparable to those of cancer patients, however, individuals with severe dementia have been reported to endure symptoms (e.g. low mood, pain, confusion, urinary incontinence and loss of appetite, pressure ulcers), for relatively longer periods of time prior to death (McCarthy et al. 1997). Other studies have also reported considerable symptom burden experienced by people with dementia warranting palliation (Lloyd-Williams 1996; Volicer et al. 1994; Mitchell et al. 2004b). Covinsky et al. (2003) published the first empirical data that illustrated people with cognitive impairment experienced a gradual process of decline whereby, two years prior to death, they were found to be fully-dependent across four major functional measures1. Based on these findings, it was argued that “prolonged and progressive dwindling marks the end-of-life course” for people with dementia (Covinsky et al. 2003, p.495). Others (O'Connor 2004) have also recognised the importance of having care systems and models of care that will accommodate people who undergo protracted deterioration.
Over a decade ago Engle (1998) asserted that the provision of appropriate and responsive care for people in RACFs, including people with dementia, relied on a shift in the focus of care to acknowledging the presence of a “living-dying” continuum. This shift, it was argued, could transform the focus of health care professionals to “consider the quality of living-dying rather than the quality of life” (Engle 1998, p.1172). Such a conceptual shift with respect to the care of people with dementia has however largely been thwarted by a failure of health care professionals and family caregivers to recognise dementia as a terminal condition (Robinson et al.,
2005b). Mutragh et al. (2004 p.40) have explained that in most non-cancer conditions, dementia being a primary example, the “entry re-entry” death trajectories mean that there is no clearly-defined terminal phase. Hence, with a more ambiguous dying trajectory compared to other terminal (especially malignant) conditions (Brenner 1999; Hanson et al. 2002), as well as difficulties with diagnosis and estimating prognosis, means that the relationship between dementia and dying both conceptually and practically has not been overtly recognised (Robinson et al. 2005b; Mitchell et al. 2006; Ahronheim et al. 2000; Albinsson & Strang 2002).
2.2.3 Recognition of dementia as a terminal condition
Research investigating care provision for people with advanced and end-stage dementia has reported that inappropriate interventions and overly-aggressive treatment practices of health care professionals suggest a lack of awareness or acknowledgment of dementia to be a terminal condition (Mitchell et al. 2004a; Morrison & Sui 2000b; Hanrahan & Luchins 1995). Literature (Hsu et al. 2005) suggests that there are gaps in the knowledge of aged care staff about dementia that may contribute to poor management of care and inappropriate interventions. Additionally, nursing assistants (PCAs) have identified their needs for further training opportunities, more information about dementia and ways of improving their communication and behaviour management skills (Burgio & Burgio 1990; Mass et al. 1994; Morgan 1996).
Qualitative research has revealed that family members also do not consider dementia as a terminal condition. Chung (2000) reported in her qualitative study that family caregivers have predominantly “lay” understandings about dementia, based largely on personal experience. Similarly other research (Caron et al. 2005b) has reported that family caregivers of people with severe dementia have limited understanding of the natural course of dementia. Focus groups conducted with 28 family caregivers in a qualitative study in the US demonstrated that most of the participants were unable to conceptualise the trajectory of dementia, with the dying process reported as “unrecognised” and “disguised” (Forbes et al. 2000, p.257). Most family caregivers believed that their relative would die of a sudden medical event (e.g. heart attack or stroke) rather than a more progressive process of deterioration (Forbes et al. 2000) and hence, tended to “disassociate” their relative’s dementia from death (Gessert et al. 2001). Not surprisingly, family caregivers have been identified as requiring
improved knowledge and information about the dementia trajectory (Arai et al. 2008; Albinsson & Strang 2003; Aggarwal et al. 2003).
Current research suggesting that family caregivers and aged care staff do not associate dementia with death begs the question as to what the possibilities are for initiating a palliative approach to care. Arguably, the recognition of the need for palliative care is enhanced by knowledge of the dementia trajectory. Therefore, this project offers an important opportunity to explore ways of working with staff and family caregivers to enhance their knowledge about dementia. The importance of investigating such strategies is highlighted by Small, and colleagues (2007 p.7) who eloquently make the point that, “to be living with dementia is to be dying with dementia”. With this in mind, insights from sociological literature suggest that cultural mores also shape the way that people, such as family caregivers and RACF staff, conceptualise dementia and death.
2.2.4 Socio-cultural considerations: dying, death and dementia
A number of broad cultural factors have hindered palliative care from being embraced within society and in health care settings. Notwithstanding the debates around economies of care and cost-sharing (O'Connor & Pearson 2004), death is viewed within health care and the wider society as a “medical defeat or failure” (Ashby et al. 2005). Social anxiety about death prohibits an acceptance of mortality. With the emergence of medical dominance in Western society, aligned with values of modernity such as technical progress, individual empowerment and control over one’s world (Valentine 2006; Giddens 2006); death challenges medicine’s most fundamental goals of control and/or cure (McInerney 2007, p.392). Accordingly, Valentine (2006) has asserted that modern society has difficulty in reaching a resolve with human mortality. McInerney (2007), in her analysis of the “requested death movement”, has highlighted the social unacceptability that is associated with dying and how “grotesque” processes that accompany the loss of control over the body are understood as fundamentally altering the identity of the person.
Modernist values of contemporary society are not only challenged by death but also by disability and “defective bodies” (Wolfensberger 1994, p.400). The gross cognitive and physical deterioration associated with advancing dementia (such as incontinence, reduced communication skills, the inability to feed oneself and in later stages, loss of mobility, loss of verbal skills, limb contractures and the adoption of a
foetal position) has led it to be described as a “living death” (Small et al. 2007, pp. 103-104). The loss of physical and cognitive functioning has been associated with a loss of self-identity or a “dismantling” of the self (King 1997, p.277), with medicine ineffective in countering this process.
More recent advances consider the construction of the enduring nature of personhood beyond loss of cognition (Kitwood 1990, 1993a, 1993b, 1997). Kitwood (1997) has proposed person-centred care that continues to value the person’s identity as an approach to people with dementia. It relies on formal caregivers and those close to the person with dementia having intimate knowledge of the person’s life history, personality and lifestyle, so that care can be provided that supports the person’s identity and values their individuality (Kitwood 1997). Despite these developments, research suggests that the physical and cognitive deterioration and loss of control associated with advancing dementia have meant that the condition continues to be stigmatised as socially unacceptable (Zimmermann 2004; Dobbs et al. 2008). The socio-cultural context within which death and dementia are ascribed meaning, have resulted in neither death nor dementia being readily embraced within society.
Despite death being a “common occurrence” (O'Connor & Pearson 2004, p.32) in nursing homes, evidence suggests that it remains hidden with infrequent discussions on the topic (Forbes et al. 2000; Gessert et al. 2001; Komaromy 2000). Dying and death have undergone gradual privatisation, sequestered by institutions such as RACFs, and removed from public life (Froggatt 2001a; McInerney 2007). Consequently, Western societies have become largely devoid of positive death rituals (O'Gorman 1998). Komaromy (2000) has reported that institutional practices in nursing homes, which support the invisibility of death, contribute to a denial of dying. Forbes and colleagues (2000 p.256) have argued that in a social and institutional culture where death is concealed, considered taboo and largely “excluded from public and private discourse”; family caregivers of people with severe dementia have been required to make complex decisions in the absence of open and supportive communication. Consequently, there is an increased risk that people with end-stage dementia will be subject to inappropriate treatment, as family members feel compelled to “treat the ‘treatable’” (Forbes et al. 2000, p.255).
Death in RACFs however, is not an uncommon process. Arguably, the way that death has been framed by dominant cultural imperatives and practices as a hidden phenomenon (Komaromy 2000) while simultaneously as highly “normalised”
(O'Connor & Pearson 2004; Komaromy 2000), undermines opportunities for the provision of palliative care. O’Connor and Pearson (2004) have argued the case for openly acknowledging death and dying in RACFs at policy and practice levels. More recently, developments within the field of palliative care have seen the emergence of a more generalist model of care for people with life-limiting conditions and a gradual movement toward greater death awareness in society.