Aging in America: Adult Caregiving Conflict essay part 2
Aging in America: Adult Caregiving Conflict essay part 1
The costs of caregiving
As their everyday life changes drastically, caregivers face time, work and money loses, putting them into conflict with the surrounding environment. Thus, the US Federal Program providing health insurance to the elderly and special care for them accounts for over 10% of country’s GDP (The National Alliance for Caregiving, 2009). Though medical expenses not covered by insurance companies often are not taxed (like mileage of car trips to a doctor or clinic; prescription drugs and medical equipment, the cost of some meals, etc.), families and those caring for the elderly people still often pay out a lot of expenses of their own pocket, and these costs never get covered by insurance plans. For example, as “Valuing the Invaluable” research (AARP Public Policy Institute, 2011) states, the value of informal caregiving in 2011 exceeded the value of paid home care at almost $450 billion, which was more than total Medicaid spending in 2009.
Besides, 70% of caregivers simultaneously suffer work-related problems due to their caregiving roles (Coughlin, 2010, p. 355), which forces them to reorganize their schedule, decrease working hours, use FMLA law to take a 12-week unpaid forced leave, refuse from a promotion, retire early, or even fully give up work (Gordon et al., 2012; Lai, 2012; Wang, et al. 2013). As a result, according to 10 million caregivers aged over 50 lose nearly $3 trillion having faced the loss of wages, health insurance, retirement savings, social security and other possible or potential benefits (Earle & Heymann, 2012, p. 363), whereas the costs of absenteeism are even higher for the U.S. economy, being estimated at over $25 billion due to productivity loss (Witters, 2011). On a whole, approximately 17% of full-time workers who provide care to the elderly skip 126 million workdays annually (Wang, et al. 2013, p. 1054).
Instead, according to AARP Public Policy Institute (2011), caregivers spend on average 20.4 hours per week providing care, while for those who live with the care recipient, this figure is even greater and reaches 39.3 hours per week. In the long term, only 30% of caregivers provide care for less than one year, while in most cases the average duration of caregiving exceeds 4,5 years, with 15% cases of caring for 10 or more years (Lai, 2012). The growth of caregiving duties leads to the significant reduction of caregivers’ private time for habitual activities by 27%, which often presents a several times stronger effect on their personal and family life than the effect on employment (Coughlin, 2010, p. 462). These facts move us to discussing the inner conflicts caregivers experience while performing their roles.
Positive and negative aspects of caregiving: Love and sympathy vs. stress and burden
Everyday care for an elderly recipient can bring valuable experience but at the same time be a stressful and difficult task. As it was mentioned above, helping the elderly cope with the hardships of aging and life-threatening diseases, caregivers are often put under pressure of demands from work and family along with the emotional, physical, financial and spiritual shock.
On the one hand, providing care and assistance bring a feeling of satisfaction and of fulfillment. In particular, it was found by Carbonneau et al. (2010) that 55-90% of family members caring for an elderly relative find in their role some aspects that bring them moral satisfaction. Among others, there are moments of unity, great fun, common insights into the past, vivid memories, close relationships with the elderly forged due to more spare time found for socializing. In caring for elderly relatives, another positive side is the possibility to take care of those you love, those you had lived under the same roof with for quite a while and shared all the hardships of life. Thanks to the efforts of caregivers, family member will look nice, wear one’s own clothes and live in one’s own house, which brings joy to caregivers themselves. Some respondents believe that the implementation of these requirements is a fairly easy thing to do, but as Carbonneau et al. (2010, p. 335) rightfully mark, this lasts until the elderly persons starts showing the symptoms of dementia.
Indeed, providing care and assistance for the elderly is not a static process, because this person’s needs change along with the changes in the state of one’s health. At the same time, care recipients inevitably dependent on their caregiver, and consequently, they are vulnerable in terms of attitude and quality of the care and assistance provided by the particular person, while the caregiving process involves continuous change and adaptation in the relationships and in the role of guardian. In particular, in the case of acute disorders or long and intensive care for the elderly many caregivers cannot do without the help of other people with whom they could share (or delegate) their duties. It is, therefore, not surprising that becoming a caregiver a person often raises difficult personal issues of responsibility and duty, compliance with requirements and feeling of guilt which often not only increase the direct load, but also bring indirect effects. For example, as it was fixed by Lai (2010), Lee and Tang (2013), Coughlin (2010), and Gordon (2012), caregiver’s private time is significantly reduced, one is forced to spend energy and funds which could be directed to satisfy other vital needs, moreover, the role of the caregiver can have a negative influence on professional work, social life and relationships with others.
Taking into account the extra energy, time and efforts required for patient care, along with emotional loading and significant impact on the support system, it is easy to understand why many caregivers believe that this role significantly affects their welfare. Increasing number of studies on the effect of patient care over the past 20 years allows a deeper understanding of the state of caregivers and provides a solid foundation for individual assessment and intervention in each case. By now, experts have realized and structured the difficulties faced by caregivers treating sick relatives, moreover, statutes and guidelines have been developed that recommend or require paying attention to the needs of caregivers.
Thus, several studies (Alzheimer’s Association, 2011; Carbonneau et al., 2010; Lai, 2010) have found that over a third of people taking care of their elderly relatives with dementia experience excessive stress, suffer from depression or other mental illness. They also report of more frequent communicational misunderstandings than people of the same age who are not engaged in care; moreover, in Holstein’s (2010) opinion, these group of caregivers has worse physical health and they take more drugs prescribed by doctor than the sample of people matched to them by age. Caregivers with elderly relatives have difficulty in coping with stress, and this becomes the main factor influencing the decision to place them in care homes (Brank & Wylie, 2014).
Using the latest data, Funk and Stajduhar (2009) have developed a descriptive longitudinal phasic model of care and assistance, based on information from interviews with caregivers supporting people with various stages of dementia. The authors identify the six stages of this model implying: replying on the past; recognizing the needs; accepting the challenge; addressing it; achieving goals; starting over. The basic process of “stress-assessment-overcoming” (stress recognition and assessment, evaluation of resources and ways to overcome the stress, start of action and its evaluation) occurs at each of these stages. This model encourages doctors to consider the caregiver “career” in dynamics and adapt the necessary intervention to the appropriate stage of the process. A completely different model was proposed by Bialon and Coke (2012): in their view, caregiver should be guided by the basic, perhaps not clearly expressed, set of beliefs. These beliefs along with the needs of the care recipient affect the goals and objectives of the caregiver. Then the goals and objectives define the set of practical actions and behavior overtaken by the caregiver accompanied by the corresponding emotions and experiences. The advantage of this model is that it focuses on the role of core beliefs and values, and broadmindedness. This makes this model applicable to different circumstances of the caregiver and allows developing interventions corresponding to particular moment, not focusing on stress and onerous duties.
When assessing the degree of stress manifestation in a caregiver, it is important to differentiate between objective and subjective burden. As Brannen and Petite (2008) state, objective burden is the amount of practical support (or work) the caregiver is to provide (or execute) depending on the need of the care recipient in it. Subjective burden is the emotional and cognitive reaction of the caregiver to the situation, as caregivers depending on their interpretation of their own situation may differently perceive the same amount of care work based on tasks they need be fulfill (i.e., the objective burden).
Probably the most famous interview to assess the burden is the one designed by Zarit in 1980 (cited in Holstein et al., 2010). It is a questionnaire of 29 items for self-completion and is designed to assess subjective burden. In the original study, the study sample was medium-sized (n=29), and consisted entirely of persons who provided care for relatives with memory problems. The range of possible responses from “not at all” to “extremely” is not clearly defined, psychometric features and construct validity of the scale is not clear. Nevertheless, its face validity is high, it is suitable for caregivers and is widely used. In a carefully executed review of 53 studies on the care of the elderly people with cognitive impairments Bedard and colleagues found that the burden assessment interview (Zarit) (or the value obtained when using it) was used in 25 (47%) studies (Holstein et al., 2010). Conversely, the scale applied by Brank and Wylie (2014) allows estimating the degree of objective and subjective burden of stress caused in a caregiver by a variety of factors. Both scales are long and detailed, therefore they provide detailed reflection of the picture of the support given, as well as the reaction of a caregiver to every aspect of one’s role. Thus, Behavioral Assessment Scale of Later Life is primarily used to assess the behavior, and it does not contain psychometric tests as a component reflecting the response of a person providing care to a sick relative. Nevertheless, it gives a fairly complete picture of the individual and may provide a clinical picture useful for targeted interventions reducing the stress. Carers’ Assessment of Difficulties Scale contains quite good psychometric features and the results allow distinguishing stress experienced in each of the five spheres (for example, the difficulties of providing assistance in everyday routine, and the difficulties associated with caregiver support network). It does not specify the stressors affecting directly the changes in relationships.
It is good to know not only the kind of assistance provided by individuals and how it affects their emotional state, but also how they cope with the stress. Bialon and Coke (2012), as well as Brannen and Petite (2008) developed a list of questions, applying Caregivers’ Assessment of Managing Index (CAMI), which allows getting a description (from the words of the caregiver) of methods with which the one copes with stress, and assess whether they are useful when used along with the Caregivers’ Assessment of Difficulties Index. Funk and Stajduhar (2009) also developed a scale of ways to overcome the stress associated with care giving that can be used to find out which methods caregivers prefer. It consists of three subscales that reflect different ways of coping with stress.
On a whole, stressfulness, manageability and satisfaction level of experiences perceived by a caregiver depend on several factors related to 1) the care recipient (severity of disorders; patients’ behavior), 2) the caregiver and relationships with the patient, and 3) family circumstances. The ability to find meaning in a particular situation allows many caregivers to continue to carry out their responsibilities and get a feeling of satisfaction from them. Research results and opinions of modern authors suggest that caregivers who are able to use different ways to cope with stress adapt to the demands of treatment easier. Some believe that problems solution and active coping with stress enhance the level of psychological well-being, whereas avoidance or coping with stress through emotional reactions lead to less effective adaptation.
Radical forms of conflict: violence against the elderly
Violence against the elderly is another serious social problem that is often left unnoticed. Although this phenomenon is not new, the pace of population aging around the world raise concerns about the fact that the frequency, incidence and complexity of the abuse of elderly people can grow as well. Globally, the number of cases of mistreatment of the elderly is projected to increase, as many countries have a rapidly aging population, whose needs cannot be met adequately due to limited resources. The situation is aggravated by the fact that, in most cases, older people completely depend on their offenders.
Basing in Daly (2011) and Anetzberger (2012), the concept of violence in this case often involves intentional or unintentional neglect of duty of care, such as providing inadequate levels of nutrition, personal care, health care or communication, unwillingness to be next to an old and weak person. In particular, gerontophobic-minded people like the elderly only as long as they can bring at least some benefit. Once there is none, the question occurs of isolation and delimitation of a useless person. There have been also observed extreme instances of gerontophobia when people stop feeding the elderly, do not let them go anywhere or even kick out of the house (World Health Organization, 2011).
However, gerontologists have a definite opinion: if an elderly person does not pose a threat to others, one must live in society (Daly, 2011; Anetzberger, 2012). The mistreatment of elderly people entails a number of consequences for both individuals and societies. Victims of such treatment often experience great suffering, and emotionally might never completely recover from the trauma. The person may suffer from an overwhelming feeling of insecurity, disease, anxiety or depression. According to UNESC (2012), maltreatment, including neglect, also leads to a stronger dependence in executing daily living activities, more frequent visits to trauma services, higher levels of mortality and self-destructive behavior of elderly people suffering from ill-treatment, which may even lead to suicide. For the elderly people the consequences of violence can be particularly serious because they have more fragile bones that take longer to recover. At the level of the society, maltreatment is associated with increased direct costs of health care, case detection and personnel training, as well as indirect costs associated with the loss of social capital and weakening of the ability of people to make a productive contribution to society (World Health Organization, 2011).
At the same time, there is no publicly available data about the mistreatment of the elderly that would allow a comparison on an international scale, which complicate the sufficient understanding of the magnitude of the problem, and tracking its trends. In addition, the mistreatment of elderly people remains a taboo subject within their community, and they usually remain silent fearing of explosion of the family member, deprivation of care or placement in a nursing home against their will. As Anetzberger (2012) states, elderly people who have suffered from abuse are usually torn between the feelings they have for their oppressors and the desire to speak about such treatment. Moreover, the identification of abuse of persons with disabilities or reduced capacity for work, for example, Alzheimer’s disease or other forms of dementia, may be even more complex, as these people might not be able to express their need for support (Daly, 2011; Alzheimer’s Association, 2011). That is why, even in countries where reporting of mistreatment is obligatory the magnitude of data underestimation can be significant. According to WHO (2011), the information about the mistreatment are underestimated by at least 80%. WHO (2011) estimates that about 4-6% of the elderly are subjected to one or another form of ill-treatment at home.
Some countries are trying to better understand the current situation by conducting the surveys using different data sources and methodology. For example, France uses the data of national hotline calls for the offended elderly people as an indicator of the actual incidence of abuse. In 2011, the service received 3,850 calls with messages about mistreatment of the elderly, with 75% of reports concerned persons living at home. Extrapolation of these figures shows that maltreatment in France occurs in a ratio of 5% of those aged 65 and older, and 15% of those aged 75 years and older, which corresponds to no less than 600 thousand people (Anetzberger, 2012, p. 15-16). Another noteworthy example is an international study on abuse and health of elderly people in Europe, conducted among persons aged 60-84 in seven European countries (Germany, Greece, Italy, Lithuania, Portugal, Spain and Sweden). The study found that 19.4% of surveyed elderly people suffered from psychological abuse, 2.7% from physical, 0.7% from sexual, 3.8% from financial, and 0.7% from injuries (World Health Organization, 2011). In general, there is an obvious necessity to improve the accessibility of reliable national and international data as a basis for the development of evidence-based policy.
Aging in America: Adult Caregiving Conflict essay part 3
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