In nursing history, the value of older persons as individuals, particularly those in large institutions, was not considered and care was based on rigid rules and task orientation that served the
organisation rather than the people (McCormack 2004). The centrality of care was person-as-body, a body that required washing, dressing, feeding, and moving around the care home in accordance with the schedules and routines of the institution rather than the needs of the residents who were rarely given the opportunity to express their choices and preferences (Aggarwal et al. 2003; Dewing 2002; Moyle et al. 2013).
Care was conceptualised within the medical model as the management of the pathological symptoms of the disease, rather than care of the person (Beattie 2009). People with cognitive impairment were viewed as ‘patients’ with problematic behaviours and a medical condition which required managing (Aggarwal et al. 2003; McCormack 2002). The emphasis on tasks and physical care was at the expense of valuing the whole person and their individual physical, emotional, and spiritual needs (Abbey & Alzheimer's Australia 2013; Kitwood, T 1997).
While it essential and humane to alleviate the symptoms of any illness, particularly those that induce pain or distress, the clinical framing of care which over-privileges symptom management was at the expense of personhood. Although a medical model of care pervaded healthcare generally, care of
people with dementia was often more depersonalising than for most of the population who were more able to exercise some control over their lives (Dewar & Nolan 2013).
Negative attitudes towards people with dementia and dehumanising practices prevailed for many decades until the seminal work of Kitwood and Lawton challenged the depersonalising effect of the medical model of care, which they argued further contributed to a decline in cognitive capacity and well-being (Bredin et al. 1995; Lawton 1997; Zeisel 2010). Rather than solely a result of their illness, the loss of personhood and sense of self argued as an outcome of the way people with dementia were treated as ‘less than human’, objectified, and not valued as individuals (Behuniak 2011; de Vugt & Dröes 2017; Kitwood, T 1997).
Lawton, an early environmental gerontologist, stated that values such as dignity and privacy are an ‘inalienable right’ (Lawton 1981, p. 245). He promoted the need to focus on subjective well-being and understood the importance of the complex person-environment interaction on well-being (Lawton 1977; Pearlin et al. 2001). Kitwood, T (1997) developed the concept of Person-Centred Care (PCC) that was based on valuing the person and providing personal choice and autonomy. The contributions of these scholars were significant in reframing western thinking about people with dementia and informed both scholars and the aged care culture in recent decades.
Valuing personhood became a central tenet and the key goal of nursing and care practice (Dewing 2004) although the concept of ‘personhood’ is complex and contentious and with various
interpretations within health-related academic circles (Higgs and Gilleard, 2016). PCC is based on staff connecting with and getting to know the residents personally so that care can be tailored to the needs of the individual (Ortigara & McLean 2013). The intent of PCC is that each person is free to make choices regardless of their impairments (McCormack 2004). Thus, PCC is a moral position that protects the rights of individuals, respecting their value as a person and their dignity.
The PCC model is viewed by many as the ‘gold standard’ of dementia and aged care (Beattie 2009; Moyle et al. 2013). There is little doubt of the positive impact made by Kitwood with his concepts of personhood capturing the intrinsic worth of persons, which provided a new sense of purpose for care staff (Moyle et al. 2013). The concept of valuing personhood is a fundamentally noble ideal,
representing a universal ‘moral principle that extends beyond politics, religion, wealth, privilege, cognition, rationality, or ability’ (McCormack 2004, p. 33). Higgs and Gilleard (2016) however, maintain that terms such as ‘personhood’ are unhelpful concepts to underpin models and standards of care as they are too abstract and not clearly understood.
PCC was a significant move from ‘pathology to people’, and there is widespread support of this concept, although the philosophy of valuing personhood does not always translate into practice (Dewar & Nolan 2013; Nolan et al. 2006). PCC is not without issues, especially within the current context of performance-based care and inadequate resourcing to care for highly dependent residents (Dewing 2004). As discussed in Chapter 2, RACFs are reputably under-resourced for the demands of caring for people with dementia and several detractors argue that PCC has added complexity and created tensions within organisations (Dewar & Nolan 2013; Fazio et al. 2018; Nolan, M et al. 2006). McCormack (2004) concludes that despite the long-term inclusion of PCC in policy, public discourse, and research literature as a concept, there is little empirical evidence articulating the benefits and organisational perspectives of implementation. Several scholars are critical of the concept of PCC regarding care delivery when definitions are inconsistent and specific dementia care training is often non-existent (McCormack 2004; Moyle et al. 2013; Ortigara & McLean 2013). Popham and Orrell (2012) found that even when the staff knew about PCC, it was seen as an ideal rather than a realistic
goal. Management practices and organisational structures often remain focused on task efficiency and care of residents’ basic physical needs (Aggarwal et al. 2003; Moyle et al. 2013).
Critics argue that PCC can be conceptually limited and is a somewhat misguided and overused term that has lost some of its original value and intent (Adams 1996). As a result, PCC has become part of what Nolan et al. (2004, p. 46) refers to as ‘contemporary speak,’ which he critiques as a ‘heroics’ model that fosters notions of independence and privileging autonomy that is unrealistic and potentially undesirable for people with ongoing declining health and cognitive abilities.
Further, several researchers caution that we must be careful not to be driven by the model and the ‘ideal of personhood’ but strive for a more general humanist approach in everyday practice
(McCormack 2004; Nolan et al. 2006). While respect for personhood is fundamentally about supporting well-being and overcoming the issues of the previous task-oriented care model, PCC continues to position the cognitively impaired person as a passive receiver of care (Nolan et al. 2004). Thus, PCC risks marginalising other people in the care relationship as it focuses on the benefits of the care relationship for the person with dementia, notionally rendering both family and staff roles as peripheral (Nolan et al. 2004; Nolan et al. 2002).
Caring is a complex process, and there are many factors, including the built environment, which influences the quality of care and relationships between residents, family, and staff. As discussed in Chapter 2, supportive relationships with significant others and remaining in a familiar environment have been identified as the most critical factors in determining the quality of care and supporting well-being for people with dementia (Davies, S & Nolan 2006; Fleming & Purandare 2010; Hadjri et al. 2012).
In response to the issues identified with PCC, a model of care has been proposed that is predicated on reciprocal relationships (Nolan et al. 2002; Smith et al. 2010). The concept of well-being
promoted by reciprocal care relationships expands the notion of PCC to include people in the caring relationship: the person with dementia, the family, and staff. Reciprocal relationship-centred care is more inclusive and recognises that the caring relationship has benefits and meaningfulness, as well as strains, sacrifices, and challenges for all parties.
Further, and crucial to this study, is the conclusion of Dewar and Nolan (2013) that interconnected reciprocal relationships are situated within an inter-related social and physical environment. The ideal relationship is based on an appropriate balance of independence, interdependence, and dependence supported within the social and physical setting. Reciprocal relationship centred care is based on the Senses Framework developed by Nolan and colleagues to provide an enriched
environment of care so that the six senses of security, significance, continuity, belonging, purpose, and achievement are experienced by all in the care relationship; residents, family, and staff (Nolan et al. 2006; Wilson et al. 2013).
The reciprocal care model is in the early stages of research and implementation in care organisations, and Dewar and Nolan (2013) acknowledge that further development and evidence is required. While a more detailed discussion is beyond the scope of this thesis, the core mission of valuing all in the care relationship inspired and informed the research approach taken in this study, as described in Chapter 4.