Today, we are currently living in a society where it is becoming the norm that older adults are living much longer and thriving in their later stages of life. While this is becoming the “new normal”, there are still a great number of older adults that are facing an array of health challenges and consequently become reliant upon a caregiver daily. As older adults are faced with health challenges, they become more dependent. With this in mind, there are a select number of individuals that take on the task of supporting these older adults by assisting them with completing tasks in various aspects of their lives. However, as caregivers begin to take on the role as caregiver of an older parent or spouse there is caregiver burden and stress that comes along with this responsibility. In an effort to maintain the health of the older adult receiving care, it is necessary to also provide supportive services and resources to caregivers to successfully continue in their role.
Research has been conducted to demonstrate that there are multidimensional issues and there are physical and psychological risk factors associated with the health of caregivers. When it comes to the type of care that is offered to older adults, there are usually informal and formal caregivers that uphold the responsibility of caring for a mother, father or spouse. As one begins to educate themselves on the problems associated with this particular population, there are interventions and supportive resources present to combat the caregiver burden that is involved in caring for a dependent family member.
This literature review will discuss the problems associated Older Adult Caregivers as well as evidence based practices that have been effective with this population. This literature review will also discuss the burden and stressors that they face, caregiver relationships amongst family members, gender differences in caregiving practices, inaccessible support programs and the limited results of psychological treatments for older adult caregiver.
Review of Literature
Caregiver Burden/Stress
Taking on the responsibility as caregiver for an older parent or spouse is a major task that has the potential to take a toll on the body physically and mentally. Often times, the caregiver’s physical, emotional and mental well-being is not considered when assessing their relationship to the recipient of care. It is important to specifically define caregiver burden, in which the term “burden” generally refers to the management of specific tasks to be carried out, whereas “stress” more frequently refers to the more subjective form of strain on the caregiver as stated by Pilisuk and Parks’ in their qualitative account on where caregiving families need help (1988). Pilisuk and Parks (1988) suggested that a complete understanding of the impact of caregiving on the family unit should be gained; objective burden, which includes physical and financial responsibilities, and subjective stress, must be studied closely to evaluate the different meanings of events to the individuals experiencing them (Niederehe & Fruge, 1984; Pearlin & Lieberman, 1979; Poulshock & Diemling, 1984). Each caregiver experience is distinct and unique, however some generalizations can be gathered in regards to the objective burden that is experienced. For example, on a typical day the primary caregiver will spend more than six hours carrying out tasks that include attending to personal hygiene, medication, household chores, shopping and transportation as reported by Pilisuk & Parks (1988). Emotionally, this creates another form of burden as well when physical assistance needs to be provided to a disabled elder of the family. Somners (1985) found that emotionally the burden of caregiving for an elderly parent or spouse is different from caring for a healthy baby or young child because in spite of the objective burden that caring for them presents there is a sense of fascination and potential that will eventually manifest. However, Somners states that in an elderly parent or spouse it becomes a source of gradual disintegration in which, the psychic representation translates into a deeper sense of loss, frustration and death (1985).
Role of the Family
For many families, caregiving is a task that immediate family members will assume simply based on the connection. In a study of the role of informal and formal caregiving for the elderly by Litwak (1985) asserts the normative view that the family possesses a very special place in the practices and expectations of caregiving, this view still holds to be true in the present time. In most cases, studies have shown that sometimes one relative will operate as the sole caregiver. In spite of this fact, caregivers who still receive additional forms of support such as frequent calls or visits from other family members are likely to experience less burden (Zarit, Reever, & Bach-Peterson, 1980). Although, caregiver burden is common there are additional benefits that come along with caring for an elder parent or spouse. Caregiving has been shown to increase the bond between parent and adult family caregiver on various levels. For instance, Kaye and Applegate report that as far as intimacy, interconnectedness, and reciprocity the result in an increased connection between adult child and elderly parent. On the other hand, research (Wallsten & Snyder, 1990) has presented the fact that caregiver families experience more stress and burden than non-caregiver families.
When it comes to members of the family who take on the responsibility of fulfilling the role of caregiver, most often elderly wives or daughters handle the responsibility of providing care. Pilisuk and Parks (1988) report that about 13 percent of the caregivers were husbands and 28 percent were daughters. Additionally, approximately one in four of the daughters caring for an elderly parent and an equal number of female caregivers have familial obligations that interfere with the caregiving responsibility (Pilisuk & Parks, 1988). For majority of the women that are caregivers, work has become a point of conflict. With the demands of caregiving, employment has been threatened (Brody, 1985), has led to women having to reduce work hours, change schedules or take time from work without compensation. Within the family, these are just a few of the issues that are associated with the role of the family in the caregiving process.
The Caregivers’ Support Network
It is believed that when the caregiver has various forms of support, it decreases the level of burden or strain. Overall, caregiving to the frail or elderly by the family has been linked to stress symptoms, an increase in psychotropic drug use, and decreased participation in social, recreational activities and life satisfaction (George & Gwyther, 1986; Kaye & Applegate, 1990; Snyder & Keefe, 1985). Yet, the assistance and support that caregivers receive can clearly mediate the degree of strain experienced by the adult children or spouse of the elderly. In many cases, Brody (1990) found that the most common and difficult strains of caregiving are emotional, despite caregivers reporting the physical and financial strains. Therefore it is primarily important for familial relationships to remain in tact during this time. Bass (1980) and Jutrus & Veillux (1991) found that much of the literature on caregiving strain has examined the degree of help, social support, and community resources present for the caregiver; if the caregiver support system is solid and the quality of social services is excellent the caregiver will also experience less burden in caring for an elderly spouse or parent. For many family caregivers, their work will go unpaid (Pilisuk & Parks, 1988). For example, Pilisuk and Parks found that fewer than 10 percent of family caregivers report the use of formal services. This finding of caregiver’s low utilization of services demonstrates the lack of or insufficient availability of services (1988). It has also been noted that it is more likely for family caregivers to seek informal or non-professional services and would deem these services to be effective. Multiple researchers have noted that many caregivers feel that it is less complicated to discuss emotional issues with a member of the clergy, a family physician, school personnel or even a hairstylist because these type of individuals are often free from the restriction of scheduled appointments or fees of service just to engage in conversation with (Pilisuk & Parks, 1986).
Familial relationships must also be taken into consideration in family caregiving. Pilisuk and Parks also note that even though most caregiving occurs within the family, families vary in size, composition and in geographical proximity as well as emotional closeness (1988). Therefore, relationships with family members outside of the caregiving role should be maintained, if possible. First, a considerable amount of research has done to demonstrate that caregivers sense of burden is more influenced by the relationship with the elder, more specifically reciprocal affection, than by the severity of the older adults illness (George & Gwyther, 1986; Sheehan & Nuttall, 1988; Zarit, 1982). During this time, family cohesion, adaptability and communication is necessary between family members because there are various levels of changes that take place, while caregiving. In addition, the caregiver to elder relationship dynamic is ever evolving. Brody (1990) asserts that the caregiver must have the ability to nurture the parent, for example, without overturning the power dynamic and parenting the parent because struggles for control, conflicts, and guilt can begin to settle in over what type of help needs to be given. Lawton et al., 1989 found that relationships with other family members are important factors in deciphering the degree of burden involved in caregiving; interviews with female caregivers have exhibited relationship consequences throughout the family system in the amount of social support received, etc. Therefore, Zarit (1985) lends two specific suggestions for family intervention, which include describing the specific strengths and weaknesses of family response and creating ways of bringing out more strengths while complementing the deficiencies and second, taking time to figure out the resources, money, personnel, information and services that caregiving family must have when taking on such a great responsibility.
Gender Differences in Caregiving Practices
In families where caregivers are present the majority of responsibilities are entrusted to the female while the male has partial responsibilities. Numerous studies have examined the gender and relationship differences in caregiving. The three key findings demonstrate that, “First, the majority of caregivers to elders are women (Stone et al., 1987), and the bulk of care provided is given by women (Finley, 1989; Horowitz, 1985; Stoller, 1983). Second, men and women display different patterns of assistance that are consistent with a gender-based division of labor (Stoller, 1990). Third, women experience greater negative consequences of caregiving, typically referred o as “burden” or “stress” (Horowitz, 1985; Stoller, 1983)” as cited by Neal et al. (1997). For example, most of the daily care is provided by women in comparison to men who are more likely to engage in making arrangements for services or care management, which most times involves handling financial or legal matters.
On this topic, we must also consider the very fact that most caregivers also have professional jobs outside of their caregiving role. Research findings have shown in past research that a large and increasing number of women, also known as traditional caregivers are employed outside the home, with 58% of all American women aged 16 and older in the labor force in 1993, with an additional increase of 5% forecasted by the year 2005 (Metlife, 1994, cited in Doty, 1995). Among the caregivers of the elderly that are employed, Anastas et al., 1990 have revealed that there is a more weighty effect on work-family conflict and work-role strains for women than for men. Furthermore, Spitze, Logan Dene snd Zerger (1994) found that men who work more hours were less likely to be in a position of distress by caregiving than were those who worked fewer hours. This finding indicates that employment may operate as a justification for not providing more help in the caregiving process (Spitze et al).
Finally, to give a more specific depiction of what tasks men and women frequently specialize in caregiving, the results of the tests run to determine differences in Task Performance and Involvement by Gender have shown that “female employees consistently provide transportation, help with shopping, check on the elder by phone, and visit and give emotional support more frequently than do male employees while men were found to not significantly be more involved than women on any of the measures studied” (Neal et al., 1997).
Psychoeducational Treatments For Older Adult Caregivers
Psychoeducational treatments have been one of the heavily utilized treatments for caregivers. In a quantitative study conducted by Zabalgui et al. (2008) showed that psychological treatments are effective when it comes to reducing the self-perceived burden, anxiety, and depression in people that are attending to the needs of elderly family members. Within the previous study mentioned, results have rendered that it is necessary to improve the efficacy, effectiveness and efficiency of psychological treatments in caregivers because their results, despite being generally positive are limited (Losada et al., 2006 ; Sörensen et al., 2002 ). This particular study’s goals were to investigate the efficacy of a psychoeducational intervention on caregivers that target goals are reducing symptomology and feelings of psychological distress which should result in improving the psychological health of caregivers (Luminana-Gras et al., 2016). The ultimate goal of psychoeducational treatment is to preserve or improve caregiver’s psychological health by targeting risk and protective factors to delay or prevent the appearance of a psychopathology (Peinado & Garces, 1998). In order to accomplish these goals, researchers suggest a face-to-face group format as well as a distance format of treatment. To give greater insight to what the treatment entails, “Face to face group treatment consisted of eight sessions and included the contents that have been proven effective for improving the distress of caregivers (Gatz et al., 1998). This cognitive-conductual treatment through which caregivers are provided with information and training in improving skills for their own care and that of others (Losada et al., 2006; Magliano & Fiorillo, 2007).” For the face-to-face group treatment, sessions were an hour and a half and were scheduled weekly with homework tasks to complete. “The distance treatments (used as a control group or for comparison purposes) had minimum content on self-care. This information was given individually to each participant by means of a small exercise book adapted for this format” (Luminana-Gras et al., 2016). Of the most recent research results presented, this concept of treatment seems to be most effective for a face to face group modality as results have shown that the magnitude of change post intervention were significant as evidenced by caregivers displaying stable mental health.
Group Proposal
I am proposing a psychoeducational group that is based on the theme of Caregiver Training and Support. The Caregiver and Training Support Group will have a triage approach. This psychoeducational group will serve the purpose of teaching it’s members the basic practices on caregiving on how to properly prepare to care for a relative, self-care practices in the caregiving process, as well as encouraging connecting with members of the caregiving community by participating in caregiver outings.
This group will be facilitated by a geriatric social worker that is educated on common issues that caregivers and older adults face as well as a peer-facilitator that has direct experience in serving as a caregiver to an older adult. In this type of psychoeducational group it will be important as a facilitator to be the type of leader that demonstrates active listening skills, reflecting feelings, supporting, setting goals and empathizing.
The Caregiver Training and Support Group would be organized by a team of social workers and peer facilitators that have successfully demonstrated competence in caring for older adult family members. The members would be recruited through Adult Day Health Care Centers and Community Senior Centers. The screening of potential caregivers would take place by requiring interested group participants to complete a questionnaire that assesses the needs through asking questions that include the various level of information and support that will be provided during the psychoeducational group. It would also be a good idea to have spokespersons that volunteer to hold informational sessions at Adult Day Health Care Centers and Community Senior Centers to gather prospective members. The goals in screening the members is to find caregivers who are experiencing varying levels of burden or strain, assisting those who may be new to the caregiving role or recruiting caregivers that are emotionally overwhelmed by the caregiving role and responsibilities.
I would facilitate a closed psychoeducational support group that is comprised of ten group members to begin with, that meets once a week for 12 weeks. I propose that in working with this population it would be best to meet at a community center recreational room or church fellowship hall. Being in an environment where families frequently gather is important to consider. In my research, caregivers felt more comfortable discussing their caregiving issues with members of clergy, for example so being in a church/place of worship would suit this type of group well because it is non-threatening to the group process.
I anticipate that the group process in the beginning would focus on opening the sessions with group participant introductions and as the facilitator introducing the focus of every aspect of the group. The beginning stage would also focus on members discussing why they chose to seek assistance and support and the target areas they would like to be educated on. I expect the middle stages of the Caregiver Training and Support Group to dive deeper into the psychoeducational piece by educating them on the themes associated with their role such as how to prepare for caregiving, the tools that are needed to provide quality care in the home to elder relatives, knowing the risk factors associated with caregiving, creating a caregiver-work-life balance and last preparing for legal and financial matters. I anticipate that the final stages of the group would continue to instill the importance of self-care practices by encouraging members to actively set aside time to participate in an activity that brings joy and relaxation. In addition, educating members on how to incorporate the importance of recreational exercise and attending to their personal health needs; this is an important aspect of this psychoeducational group because caregivers cannot properly care for their parent or spouse if their personal health isn’t maintained well.
The problems that I would expect to arise is members be apprehensive to participate and having a difficult time in displaying why they have a need for pursuing being apart of the caregiver training group. I would assess the group progress by asking each member to complete a post-session questionnaire at the end of each session. The post-session questionnaire will be a feedback tool used where group members are giving their perspective on if/how the current weeks group and topic served its purpose for their specific circumstance.
The overall goal of the Caregiver Training Support Group will be set in place to operate as a helpful guide for those who are providing care at different levels and desire to bring about positive change.