Autonomy in elderly care: A literature review
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Published: Tue, 11 Apr 2017
Older persons in history have been regarded as dependent because of the physical body changes that come with growing older. These physical changes greatly affect the normal functioning and the effectiveness with which they operate and hence the need for external support both at the physical and social levels (Agich, 2003). As the physical energy wanes, so does the level of activity not only to support themselves physically but also on a wider scale. It is these very changes that bring to light the issues of care and dependence of older persons on caregivers and/or family support. However and important to note, like in the rest of other social groups, older persons are a heterogeneous group in terms of gender, race, culture, class and otherwise (Bond and Corner, 2004) and therefore, there needs vary accordingly. Further, as Bond and Cabrero (113: 2007) point out, mental and physical incapacity and disability which lead to dependence are common stereotypes of human ageing. Older people in care or not have been seen as frail and therefore unable to make decisions, communicate, and engage in meaningful relationships with their surrounding environment. As a result, their autonomy in care has been compromised. Jacob (1999) cited in Townsend (2009) compounds it further that professionals and families of older people as well consciously and unconsciously bear discriminatory assumptions about them. To this end, this paper explores autonomy of older people in care in depth, evaluates existing social work practice and suggests strategies to ensure both caregivers and service users promote an interdependence that would help in reinforcing control and respect for service users.
Collopy (1988) defines autonomy as a set of notions that promote freedom, self-determination, independence that is signifying control and the power to make decisions by the individual. From a medical view point once one is admitted into care they are not well and therefore cannot cope on their own let alone make decisions. Because of this, they are viewed as patients who are incapacitated and therefore have to depend on caregivers. However, one wonders whether all older persons are incapacitated on all fronts. Even when they are fragile, do the Caregivers have sufficient expertise to socialize and communicate with them? These and other questions remain largely unanswered. This view therefore tends to ignore the strengths and abilities of the older persons. Like Runciman cited in Bond and Corner (2004) explains, in understanding social status, it is more meaningful to study individuals from their perspective and values so as correct judgments are made about them. Like all other social groups, older people too would be better understood from the view point of their everyday experiences at an individual level other than having to impose what we think is best for them. This would imply that understanding older persons’ desires means a lot to them rather than assuming that we know all they need.
Understanding of Autonomy and Care for Older Persons Contextually
Autonomy as a concept connotes a different set of meanings depending on the setting or context. It is defined differently in a sense that it means different things to different users and therefore taking one meaning or usage would very much complicate its very usage at the different cultural and societal levels on the whole (Agich, 2003). The fact that it spells out different meanings and qualities, in care for older persons too, would be quite a challenge for both the service users and the Caregivers themselves. Autonomy as a cultural ideal under the guise of freedom of choice especially in the western context is very much viewed as a necessary feature for any individual. In regard to United States for example, freedom is seen as a basic of life and therefore without which, is deprivation of an individual of a basic right (Agich, 2003). It is important to note that this freedom starts at birth throughout life and therefore including in old age, whether in care or not. In care too, without the liberty for one to advance their choices would be seen as degrading by the service user and therefore subservient to the caregiver (Agich, 2003). However this raises the question of what might happen when the service user is suffering from a severe cognitive impairment? This clearly indicates the challenge of according full autonomy to service users.
On the other hand in countries like South Africa where the elderly are seen as very important assets within their communities, it is argued that freedom begins with avoiding taking elders away from their very communities to institutionalized care (Lombard and Kruger, 2009). Institutionalized care would be seen as denying older persons an environment they consider natural and fulfilling. This entails an environment which allows them to share their older age with their kith and kin; who in this case know them better and therefore interdependence remains natural. Further, this kind of setting allows for respect and control of older persons based on cultural values. Even when older persons are mentally incapacitated, the family caregiver will know what they have always desired that is, their favorite food, dressings, entertainment and the like. This in a sense allows for older persons freedom in a manner that is fulfilling in this kind of context. However, it cannot go without mention that this kind of setting requires strong family structures that allow for time and financial capacity from the family members to take care of the elderly. With the spread of neo-liberalism that promotes capitalism and individualism, some of these especially extended family systems have broken down hence rendering older persons susceptible to dependence on hired caregivers in a family setting or institutional care (Lombard and Kruger, 2009).
Evaluation of Existing Social Work Practice and Care Provision for Older People
Inasmuch as the intentions of care for older persons are seen as good, the outcomes of both institutionalized and family care are not always pleasant (Talerico, 2004). When service users are put into care, the assumption is that it is for the wellbeing of the service users because they are being given help physically, socially and otherwise. This in many a case does not always happen because of the very nature of how older person are perceived in the eyes of the caregivers. The societal perceptions of older persons delude caregivers of the capacities and strengths that service users possess. As Townsend (2006) theorizes it, these very perceptions give birth to the ideas of ‘structured dependence’ for older persons. For example a situation where the state deliberately introduces structures and policies like compulsory institutional care for older persons that are very much underpinned by the very disempowering and biased perceptions held strongly by society.
Caregivers base their understanding of service users on the very notions they grow up with which in many cases misguides their treatment of older persons (Jacobs, 1999 cited in Townsend, 2003). In which case, service users find themselves in a difficult situation that is, cannot voice their concerns either because the surrounding environment is not supportive enough or for fear of retaliation from the caregivers (Townsend, 2006). In an investigation conducted in the United Kingdom by ‘Help the Aged International’ (2002), older persons in long-term care have suffered a series of blows partly due to the lack of quality assurance on part of the institutions and also a lack of competence from the caregivers on how to communicate with service users to deliver the required services (Townsend, 2006). A classic example in this investigation highlights a woman who was suffering from Alzheimer’s disease; she was dying of dehydration but no one could tell and she finally passed on. This is clearly an indication of lack of expertise on part of the Caregivers and as well an indicator of many others who are in the same or even worse-off situation. The fact that they could not communicate with her, they decided to take matters in their own hands; clears indicates of how dependence on Caregiver can get messy especially when there is a lacking in skills or quality assurance by the caregivers whether in institutional or family setting.
On the other hand, very few studies explore the experience of older persons’ autonomy in care, whether in institutionalized or family in the developing world. Nonetheless, in a study conducted in South Africa, there is an indication of a shift in policy of primarily taking away older persons from institutionalized care to community based care with a view of keeping them closer to their kith and kin (Lombard and Kruger, 2009). However, due to issues of neo-liberalism which advance capitalism and individualism, this leaves older persons in family care at even greater risk as would-be caregivers opt for work and hire caregivers who despite the cultural attachment with these older persons, are little known to the service users. Despite being in family settings, little is known whether the hired caregivers promote values of preferences and control of older persons. This puts the issues of meaningful relationships and interdependence in question for the older person in this kind of setting. As cited by Zubi and Conolly (2013), as well in cases where the institutional care exists, there are cases of understaffing and under funding of care activities for older persons. As a result, this raises the levels of fatigue and emotional exhaustion which leads to compromise in the quality of care. This is a clear depiction that with burnout of caregivers, self-determination of service users is not anything that would be given priority.
Further, in a study conducted by Leece and peace (2009), in which an attempt to understand what autonomy and independence of service users in care meant to caregivers, majority of them concluded that a service user had to be in a position to do everything on their own. Considering the wider and contextual understanding of autonomy; for example in terms of decision making and positive relationships, this is an indicator of how caregivers unconsciously take service users for granted in care and hence a need for evaluation of social care practice. It is important to note that inasmuch as some service user are not in a position to make decisions on their own, Talerico (2003) stresses that caregivers have taken no initiative in trying to understand how to communicate with them so as to create an environment of interdependence; that is understanding their daily activities, abilities, values and histories. All this would go a long way in shaping the caregiver’s approach to interdependence in care (Agich, 2003).
Strategies to Improve Older Persons’ Autonomy in Care
As stressed by Talerico (2004), care settings are congregated environment in which the most important thing is maximizing health and support. She adds that these very goals defeat the very purpose of autonomy because as oppose to individual choices generalist care is promoted. It should be noted however that this can raise ethical questions because service users are different and therefore their needs vary. As fronted by Leece and Peace (2009), establishment of personalized care for services users would go a long way in addressing this. This means that caregivers give a special attention to individual to not only understand their histories, values and choices but establishing effective skills of communicating with them on the whole. Even older persons with cognitive difficulties can communicate (Agich, 2003). Therefore, Caregivers must be equipped with these skills to give more meaning to care for older persons.
From the earlier discussion of caregivers who understood autonomy of older persons in care as only being able to perform tasks independently, it is very clear that communities of practice are very important. These mainly refer to a multidisciplinary approach to working with older persons in care. This emphasizes working with different professionals who work together to determine what’s best for service users (wenger et al cited in May, 2009). As nurses focus on the medical component, social workers focus on their values and preferences and policy makers advance policies that promote older people’s necessities at all levels. This promotes a better understanding older person whether in care or not. As well, this implies better working relationship not only among professionals but also with service users who are engaged at different levels. Further, this in a sense, promotes interdependence among them as dependence is phased out. In addition to promoting a better understanding older persons, specialist skills training would be important for the effective intervention of professionals at different levels. This explains the case for being able to communicate, identify their strengths and abilities and the like.
Advocacy for the rights of older people would serve to bring their issues to the forefront (HelpAge International, 2010). Historically and socially, older people have been looked at from a medical view point as frail and therefore unable to perform task let alone making their own decisions. This is clearly a sweeping generalization that does not fit the bracket of all older persons. But because this has been the case for a long time, it has come to be accepted and upheld. This line of thought therefore very much underpins the policies and activities that are geared towards older people where they are seen as ‘dependent’ as oppose to partners in working. Therefore, in deconstructing this line of thought, advocacy through community dialogue and raising aware awareness of older persons’ issues autonomy in care among which, would go a long way rectifying the age-old negative connotations about ageing. As communities accept to dialogue and become aware of the reality of old age, policies and agendas will begin to come up. In the long run this shapes the societal outlook of older persons at every single level. HelpAge International (2010) highlights how Tanzanian older women have been branded witches by their societies. As a result, this explains the kind of nasty treatment that they have been accorded whether in care or not. But by dialoguing with communities, the trend is changing for the better. Important to note is that advocacy would not directly promote autonomy in care for older persons but rather it goes a long way in pushing for older persons’ concerns high on the agenda. With the guidance of social workers, this in the short run would guide social policy and in the long run challenge and change societal outlook of ageism.
In a nutshell, if older persons are to gain control over their lives in care, then there needs to be a re-conceptualization of caring for older people; “where caregivers become supporters and advocates but not custodians and guardians as it were” (Nolan et al, 2001). As oppose to older persons being passive recipients of care, they become active participants who have some sort of control over their life while in care. This very much promotes interdependence between service users and caregivers. Concretely, as advanced by Rogers (1974), an individual-centered approach to caring, where the service user is placed at the centre of activities, would help caregivers in identifying the specific strengths and abilities of service users and therefore creating better working relationships which in the end promote interdependence and an acceptable level of control of service users.
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