Caring for aging family members: implications and resources for family practitioners
Robert Del Campo, Diana Del Campo, and Marcilla DeLeon
Abstract
The caregiving role is often bestowed on an adult child by default and can be distressing to the family system. Precautions need to be taken to protect adult child caregivers from role overload as they become sandwiched between caring for an older parent and helping their own children launch into adulthood. This manuscript will describe some of the positive and negative aspects of caregiving. It will also offer suggestions and resources that Extension educators, family therapists, and family service providers can use to support adult child caregivers as well as to plan effective treatments, educational programs and services for this rapidly growing group.
A significant demographic trend of the 20th Century was the increase in life expectancy. This trend continues as we begin the 21st Century. As a consequence, the proportion of the population that is over age 65 has expanded substantially and will continue to escalate for the foreseeable future. By the year 2020, the number of Americans aged 65 and older is projected to grow by 60 percent compared to a 4 percent growth rate of individuals aged 25-54 (Rachor 1998). This trend can be attributed to baby boomers now beginning to enter this age group. Johnson (1998) reported that approximately 76 million U.S. “baby boomers” are beginning to enter the retirement years and most will spend more years in middle age and retirement than they did raising children.
As the concentration of older people in the population increases and as life expectancy continues to extend, the problem of caregiving in the later years is emerging as a central issue in society. Caregiving as used in this paper can be conceptualized as occurring when an elderly person depends upon another for assistance with one or more activities necessary in daily living. Initially this other person is a spouse. However, adult children ultimately undertake the caregiving role as their parents age. The issue of adult child caregiving is the focus of this paper; it holds many implications for the family system as it interfaces with the larger society.
Nearly one in four U.S. households (an estimated 22.4 million) are currently caring for elderly family members or friends and this number is rapidly increasing (Rachor 1998). Caring for elderly family members is also impacting the American workforce as many caregivers reduce or change their work schedules to care for an elderly relative. Ranchor (1998) states that caregiving-related issues such as increased absenteeism, poor work quality from an employer’s point of view, lost wages, and delayed promotions for employees, will continue to impact corporate America as the baby boom generation matures.
Gerontological literature is addressing family caregiving issues by focusing on the topics of normalizing the caregiver role, the preponderance of women as caregivers, and the stresses and burdens assumed by family caregivers (Miller 1998). Extension educators, family therapists, and family service providers have used this literature to plan and update educational programs and services that meet the needs of the family system. This manuscript extends this body of knowledge and offers recent information and resources useful for helping adult child caregivers and their families. The information could be used as a basis for family practitioners to build increasingly effective programs and services for these caregivers.
The adult child caregiver
The “baby boom” generation is entering middle adulthood and baby boomers’ parents are entering older adulthood. As aging parents need care, the responsibility for this care typically falls upon the adult children’s shoulders. Brody (1995) suggests that nearly 90 percent of care to the elderly comes from their families. Within the family system, the identified caregiver is usually a wife, daughter, or daughter-in-law, although recently, men are beginning to take on this role (Rachor 1998). Caregiving can prove to be especially trying on adult children who have been characterized as “the sandwiched generation” since they are often in the process of launching their own children into young adulthood while trying to care for their parents (Ward and Spitze 1998). The competing demands are very stressful.
As an example, it is not uncommon for the adult child caregiver to be expected to work full time, look after the financial affairs of her elderly mother, keep up with her mother’s home regarding repairs and general cleaning, provide transportation for the mother to places like the pharmacy, grocery store, dentist, and physician, simultaneously shuttle her own children to their various school and extracurricular activities (being expected to attend many of these activities), and also have time in the evenings to check homework and generally “be there” for the children. After these tasks are accomplished, whatever time (if any) is left is spent with a spouse or on personal pursuits.
The ensuing stress precipitated by these overwhelming time demands often leads to tension in the marital relationship, anxiety, depression, irritability, sleeplessness, and fatigue. These stressors are exacerbated when a parent (or parents) moves in with an adult child’s family because of declining health or other circumstance. This can necessitate a total reorganization of the family’s lifestyle. About a third of aging parents who need help currently live with their children (Topolnicki 1996).
The phenomenon of elderly parents actually residing with their adult children is becoming a significant issue in society because there are now ten people 85 and older for every 100 who are 50-64 (Topolnicki 1996). The 3.7 million Americans 85 and older are the fastest growing segment of the older population, expanding at 3 percent a year. Half need assistance with one or more of the essential activities of daily living: bathing, eating, using the toilet, walking, and getting in and out of a bed or a chair. Therefore, the number of elderly parents residing with their adult children is expected to increase.
Older parents residing with their adult children can be stressful on the family system. In one recent study nearly all the caregivers noted that caregiving greatly reduced the amount of time they could spend with spouses and children as well as in their own leisure activities (Lachs 1998). Many perceived that caring for a parent had negative effects on children in terms of reduced time the parent could spend with them, as well as in terms of the children having to adapt to the grandparent’s schedule. When considering caregiving in terms of balancing work and life, Rachor (1998) reported that a study conducted by The Gallup Organization showed that those employees with caregiving responsibilities were more stressed and less satisfied with their jobs than their co-workers. They were also leading candidates for job burnout, saying they didn’t have time to get everything done at work and home. Furthermore, caregivers reported more frequent minor health problems than those employees who did not have caregiving responsibilities.
Merrill (1997) suggests that caregiving over a period of time is a career that progresses through different stages determined by the older family member’s decline, remissions and relapses in illness, waxing and waning of assistance from others, nursing home placement, and eventual death. Merrill (1997) did a qualitative study of 50 primary caregivers for elders. The caregivers were mostly female, aged 45-64, and they represented both the middle class and working class. He reported that gender, position in the sibling network, social class, stage in family life cycle, ethnicity, and competing responsibilities influenced the recruitment of the primary caregiver. Merrill found that one-third of the respondents became caregivers because no one else was available or willing. One-fifth of the caregivers were selected by siblings during a family meeting, and an equal percentage were selected by their parents. Only 14 percent had volunteered.
Adult child caregivers are confronted with conflicts regarding their aging parents (Pillemer and Suitor 1998). In one respect, aging family members can be a source of both financial and emotional support to the caregiver and her family. Many caregivers look to their aging parents for financial help with living expenses. In addition, aging parents can be a source of emotional support, wisdom, and the “keepers of the family history” for younger family members. However, they are also seen as burdensome as they age and need more daily care. Adult child caregivers often experience intense guilt and feelings of confusion because of this paradox.
Despite the wide geographic dispersion of contemporary extended families, there is evidence that emotional attachments and some degree of caregiving between adult children and their parents is accomplished across large geographical distances. However, these “long distance” caregivers report that problems occur when support services often needed by the elderly, such as transportation to doctor’s appointments for medical procedures, repair and maintenance services from plumbers, electricians, and handymen and other daily tasks can no longer be secured by the elder parent who lives some distance from the adult child (Hareven 1996).
These problems can compel the elder parent and adult child to move closer to each other. This brings about other issues related to displacement of the elder from his or her community, because it is usually easier for the elder to move than it is for the adult child to relocate. If a physical move is not possible, at least, the adult child will make some accommodation towards improving access to the elder parent. This is often done through more frequent visits, phone calls, electronic mail, and the like. Silverstein (1995) found that elderly parents, as their self care abilities decline, ultimately move closer to their adult children in order to facilitate the needed contact.
Assessing a family’s need
There are several issues that must be considered when assessing the needs of a family system that includes an adult child caregiver to an elderly family member. Harway (1996) offers a unique approach. The approach involves assessing three dimensions of the elderly family member’s life and then considering how these dimensions impact the caregiver. The dimensions are the physical, the psychological, and the spiritual.
The physical dimension for the older adult includes problems related to general health. As part of the aging process, one’s internal systems and organs become slower and not as efficient. As a result, many physical illnesses or diseases may arise. Illnesses such as cancer, chronic pain, dementia, and Alzheimer’s disease are examples of some of the more severe physical conditions. These situations could prove to be financially draining and time consuming for the family system in general, and the adult child caregiver in particular, because of doctor’s visits, keeping up with medications, and accommodations in lifestyle due to the illness. One important issue that is not typically considered is the interaction of medications taken by the elderly family member. While these medications may be necessary to combat the physical problems encountered by the elderly family member, they also could precipitate negative psychological reactions from the elder such as depression, insomnia, irritability, and anxiety.
These physically related problems often produce difficulties in relationships in the larger family system. Family members become concerned about the well-being of the aging loved one and are also challenged to have compassion for the expanding needs of the elder family member. This burden is most manifest in the primary adult caregiver because it is she who is expected to be the most responsible for the elder. Consequently, it is she whom others in the family turn to for guidance in dealing with the elder’s needs. What family members should realize is that providing support and understanding for the primary caregiver combined with giving the caregiver respite from the responsibilities of interacting with the elder (e.g., taking the elder for examinations, tests, etc.) can be most beneficial in mitigating some of this burden of the primary adult child caregiver.
A primary caregiver’s sister might show insight into the adult caregiver’s plight by offering to care for the adult caregiver’s children while the caregiver takes the elder to a doctor’s appointment. Or, she might take on the responsibility of regularly having the elder’s medication prescriptions filled or be willing to see to the financial affairs (e.g., paying property taxes, completing federal and state income taxes, estate planning, etc.) of the elder. Any tasks that family members other than the primary caregiver take on will ease the caregiver’s burden and can mitigate stress in the primary caregiver and throughout the family system.
The psychological dimension consists of concerns regarding adult development that raise questions about the way the elderly person has chosen to live life. Older adults also have to effectively confront the facts that the future is shorter, and physical impairments or limitations may increase. All of this may threaten an elderly person’s self worth and could precipitate depression. Caregivers should be aware of the elder’s need to talk about such personal issues such as how the elder perceives having lived his or her life, attitudes toward death, and feelings about the family and life in general. Should the conversations become too intense, professional intervention could be solicited for the elder including psychopharmacological interventions and talk therapies. Again, the notion of sharing the responsibility of talking and listening to the elder among family members can help the adult child caregiver in effectively confronting this task. At the same time, this can aid in strengthening relationships among the elder and other family members.
The third dimension useful in assessing a family’s needs is the spiritual and existential dimension of health and healing. This area is concerned with questions about the meaning of life. Family traditions, rituals, and love coupled with participating in religious services can enhance self-esteem in the elder and create meaning in life. Rituals and traditions add meaning, cohesiveness and a sense of history to the family system, especially for the elderly family member. A spiritual component may also prove important when dealing with grief and loss issues, whether it is for other family members or the elder.
For example, if an older family member were to lose a spouse, the grieving process could largely incorporate spiritual or religious components that are evident in the family as a way to find meaning and comfort in the loss. In addition, the emotional bond between the adult child caregiver, other family members, and the elder can be a significant medium through which the elder can feel a sense of belonging in the family. This could help the elder more effectively work through the grief process as well. The emotional and physical demands on the primary caregiver can be overwhelming at this time because the adult child is likely mourning the loss herself. Family members would do well to understand this and share the responsibilities of being there for the elderly family member.
Implications and resources for practitioners
Close emotional ties have been shown to be associated with psychological well-being and increased longevity. Thus, strengthening family relationships could prove to be very effective in helping families who are caregivers for an aging family member. One way to achieve this is through programming. Programs from the Extension Service, for example, are often perceived as non-invasive and non-threatening by attendees and therefore can create awareness about potentially serious problems in a relaxed environment. Workshops and printed publications could present information on building family strengths, helping family members understand the process of aging, promoting self-esteem, learning about stress reduction techniques, balancing work and family time, and finding respite care opportunities. By framing these issues as normal needs of families who care for an aging family member, challenges in caregiving could be more easily embraced and significantly reduced.
In caring for elderly family members, the person in the role of the caretaker is usually the family member experiencing the most pressure and stress. It is important for other members of the family to recognize the commitment on the part of this person and look for ways to aid in maintaining this caregiver’s mental and physical health. Receiving support from other family members, setting limits as to what one person is capable of doing, allowing the caregiver to reward him or herself, learning relaxation techniques and sharing one’s plight with others in similar situations can be very effective practices for caregivers.
When challenges in caregiving seem overwhelming, family therapy may be useful. It is important that therapists encourage the involvement of all members of the family at various times throughout the therapeutic process. This could include the elder’s grandchildren, children, siblings, cousins, or anyone directly involved with the family. It will often be necessary to involve the adult child caregiver in couples therapy with her spouse for several sessions as it is not uncommon for the caregiver’s marital relationship to take a back seat to other demands of caregiving, work, and family. During family therapy, it would be helpful for each member to understand the perspectives of the others in the family about the implications of caring for the elder. This could provide insight to family members and aid in readjusting or renegotiating responsibilities. Individual sessions may be in order as well, and these could be focused on providing support and understanding of the emotional impact of caregiving. One typical therapeutic goal could be to increase the involvement of more family members in the responsibilities related to the caregiving and to develop positive working relationships among the family members.
Finally, some psychoeducational interventions could help family members experience caregiving more positively. These could include helping family members learn time management and stress management techniques. Ultimately, when a family comes together and rallies around the challenge of caring for an elderly family member, the family can evolve from the experience into a more cohesive, integrated system.
There are resources that can be helpful as well. Information on local and national groups focused on caregiving issues can be invaluable in empowering families with the means to embrace the challenges of caregiving effectively and with less burden to any one family member. For example, “Children of Aging Parents,” (1-800-227-7294) is a clearinghouse for information devoted to family caregivers. Their Web site, http://www.careguide.net, provides a search engine for elder care, such as assisted living, hospice, and nursing home referrals. There are a variety of chat rooms on family issues including adult child caregiving at http://www.drkoop.com/community/chat/aging.asp. The American Association of Retired Persons also offers information for caregivers at http://www.aarp.org/caregive.
For those caregivers struggling with a loved one suffering from Alzheimer’s disease, information and links to local support groups can be found at http://www.alz.org. There is a government clearinghouse for information about government agencies and organizations for seniors at http://www.seniors.org as well. For those in rural areas, where services may be limited, respite through videotapes designed for elders with dementia or Alzheimer’s disease can be obtained from Innovative Caregiving by calling 1-801-272-9806. Finally, for local information on services and programs for the elderly, Eldercare Locator can be accessed by calling 1-800-677-1116.
Summary
number of parents who will request assistance from their adult children. Because adult child caregivers are often “sandwiched” between the needs of the older parent and the needs of their children, they are at risk for burnout. This can have implications for corporate America in terms of loss of work production, wages, and productivity and also has implications for the entire family system. Challenges associated with caregiving can be effectively embraced through education on a variety of topics such as understanding the aging process and seeking respite on the part of the primary caregiver. This is where the Extension Service can play a major role. In the event there are extreme difficulties with the caregiving situation, family therapists can assist families with solutions and provide a forum of support for the caregiver.
It is essential that families look at elderly family members with compassion and insight. They should be aware that older family members may need assistance with everyday living tasks now or at some point in the future. Accessing some of the growing number of effective, positive, services for aging family members can help families find effective solutions to caregiving issues and will help the family system stay healthy and intact.
References
Brody, E.M. 1995. Prospects for family caregiving: response to change, continuity and diversity. In Family caregiving in an aging society: Policy perspectives, edited by R.A. Kane and J.D. Penrod. Thousand Oaks, CA: Sage Publications, pp 15-28.
Hareven, T.K. 1996. Aging and generational relations: life-course and cross-cultural perpectives. Hawthorne, NY: Aldine De Gruyter.
Harway, M. 1996. Treating the changing family: handling normative and unusual events. New York: John Wiley & Sons, Inc.
Johnson, D. 1998. The consequences of living longer. The Futurist 32(5): 8-9.
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Merrill, D.M. 1997. Caring for elderly parents: juggling work, family, and caregiving in middle and working class families. Westport, CT: Auburn House.
Miller, B. 1998. Family caregiving: telling it like it is. The Gerontologist 38(4): 510-513.
Pillemer, K., and J.J. Suitor. 1998. Baby boom families: relations with aging parents. Generations 22(1): 65-69.
Rachor, M.M. 1998. When worlds collide: elder caregiving poses new challenges for balancing work and life. Employee Benefits Journal 23(3): 20-23.
Silverstein, M. 1995. Stability and change in temporal distance between the elderly and their children. Demography 32(1): 29-45.
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Authors
Robert Del Campo, Ph.D., is a Professor of Family and Child Science, Department of Family and Consumer Sciences, New Mexico State University, rdelcamp@nmsu.edu .
Diana Del Campo, Ph. D., is a Child Development and Family Life Specialist, New Mexico Cooperative Extension Service, New Mexico State University, ddelcamp@nmsu.edu .
Marcilla DeLeon, M.S., is a Graduate Student in the Department of Family and Consumer Sciences, New Mexico State University.
Cite this article:
Del Campo, Robert; D. Del Campo; M. DeLeon. Caring for aging family members: implications and resources for family practitioners. The Forum for Family and Consumer Issues 5.2 (2000): 28 pars. July 2000.
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