Family Health & Caring for Elderly Parents
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Abstract
This review of the literature summarizes the risks and benefits for adult children taking care of elderly parents, with a view to the potential consequences for the health of other family members and the overall well being of the family unit. Based on the review, a "Family-Friendly" action plan is outlined for health professionals who work with the elderly or their family caregivers.
Key Words: Caregiving, elderly, adult children, family health
Rosemary A. Ziemba is postdoctoral fellow, School of Social Work, University of Michigan, Ann Arbor, Michigan, 48109. Electronic mail may be sent via the Internet to rzie@umich.edu.
Care of the elderly is a major concern of nursing, gerontology and policy makers as needs of aging societies continue to increase in dramatic proportions (Brubaker & Brubaker, 1992; Tennstedt, 1999). Eighty percent of all care to elders in the United States is provided by family members (Westbrook, 1989), primarily by the spouse or adult daughters (Brody, 1985; Reece, Walz, & Hageboeck, 1983; Montgomery, Gonyea, & Hooyman, 1983; Stone, Cafferata, & Sangl, 1987).
There is no doubt that the illness of any family member is stressful, and this review focuses on how taking care of elderly parents affects the health of the family. The consensus in the literature, built on a strong foundation of empirical evidence, is that caregiving of the elderly can be hazardous to the caregiver's health (Grunfeld, Glossop, McDowell, & Danbrook, 1997; Schulz & Beach, 1999; Schulz, Visintainer, & Williamson, 1990). However, the health effects on others in the caregiver's family—such as spouse, siblings, or children—are relatively unknown (Leiberman & Fisher, 1995).
Research on family caregiving of the elderly has concentrated on the "primary caregiver," or the person who provides the most care to the patient, or who has the principal responsibility for the patient's care. This approach tends to obscure the involvement of—and consequences to—other family members or the family unit. In one of few studies that broach this gap, Lieberman and Fischer (1995) reported negative effects on both mental and physical health of the caregiver's spouse and offspring. Due to the scarcity of direct evidence, inferences for the health of the caregiver's family will be derived in this article from a review of the effects of caregiving on the primary caregiver.
The empirics of family care of the elderly have been built on the general stress model, which contributes to the casting of family caregiving as primarily a negative event, or "burden" (Warnes, 1993). In this review, current thought on the benefits of caregiving will be included to offset negativity. In addition, a life course perspective for individual and family development will counterbalance the negative potential of caregiving that is emphasized in the literature, as well as provide the structure of an action plan for health professionals.
Definition of Family Health
For the purpose of this review, family health is defined as the collective emotional and physical health of a family. A life course perspective on parent care is foundational to understanding family health over time (Bengtson & Allen, 1993). Families denote groups of individuals connected across the lifespan, in which energies are often shifted to address new demands, for example, childcare or major illness. In times of any caregiving demand, family health is the balanced comfort level of a family unit, in which the needs of the care recipient can be met without deleterious consequences to other family members.
A significant caregiving event is by necessity a shared family event, and the roles and experiences of all players need to be considered in balancing the resources of the family unit to solve the crisis or needs of one particular family member. Extending the definition of health to include family members automatically complicates the picture. When focusing on one person, it is easier to evaluate benefits and risks of actions to that individual. But when the health of the family is considered, it is much more difficult to tally the total impact.
For the purpose of this review, it is assumed that principal costs or risks to the family unit can be calculated as the personal consequences to the primary caregiver, especially emotional and physical, as well as financial. These costs to the primary caregiver can be extended to the family unit. While it seems likely that family members would react negatively to the loss of attention from the primary caregiver, such effects have not been studied. Relatively little is known about the role or reactions of the caregiver's spouse. Adult children report feeling the loss of the parents' previous support (Ziemba, 2002), but is in unclear to what degree others in the caregiver's family experience similar losses. Nonetheless, it makes intuitive sense that grandchildren might suffer the loss of their parents' attentions as well as the loss of the grandparents.
Family Caregiving & Cultural Diversity
Family roles and expectations are shaped by cultural values (Burr et al. 1979), with varying degrees of prescriptive custom. For example, in contrast to the U. S., many societies clearly designate the particular child in the family who has primary responsibility for the care of parents (Sokolovsky, 1990). Cultural heritage could constitute either an additional stressor or a mitigating resource for families of various backgrounds seeking care in the United States.
America is a large, complicated and diverse nation, and is typically classified as a unique culture with historical connections to western European traditions. Family participation in care of the elderly is further complicated in American culture, which, driven by values of autonomy and informed choice, tends to focus on the preferences and perspectives of the patient, with little systematic accommodation for the needs and views of other involved family members (Collopy, Dubler, & Zuckerman, 1990; Hardwig, 1990; High, 1991).
Despite differing racial and ethnic preferences or customs, the following common issues transcend cultures and families and may affect relationships between health care providers and patients' families:
- Variations of family structure and degrees of family cohesiveness (or collectivism)
- Gender roles and relationships with authority figures
- Family structures for decision making
- Desired degree of family presence in health care situations
- Extended families and available social support
- The interface with the health care delivery system and the predominant cultural group.
Health of the Primary Caregiver
Psychological Health
Because of the burgeoning demands for care represented by an increased number of frail elderly in American society, much has been written since the 1960s about the experiences of family caregivers of the elderly. The majority of research studies have been conducted from the perspective of the general stress model (Barer & Johnson, 1990; Given & Given, 1991). As a result of the demands or stressors, caregivers of the elderly are at risk for "burnout," depression, lost income, and isolation (Sayles-Cross, 1992; Tennstedt, 1999; Wright, Clipp, & George, 1993). Family caregiving commonly results in psychological distress and increased risk for clinical depression (Mellins, Blum, Boyd-Davis, & Gatz, 1993; Reese, Gross, Smalley, & Messer, 1994; Schulz et al., 1990; Skaff & Pearlin, 1992). Schulz, Visintainer, and Williamson (1990) reviewed over thirty studies on family caregivers and reported that a majority contained evidence of demoralization, and a higher rate of depressive symptoms. Indeed, despite a wide variety of measurement and selection issues, the finding of depression and depressive symptoms among caregivers is robust.
In order to effectively help caregivers of the elderly adjust over the long haul it is important to distinguish clinical depression from shock, loss, and grief. Daughters have consistently reported that one of the hardest parts of taking care of elderly parents was dealing with emotions—their parents' as well as their own (Given & Given, 1991). It is important to keep in mind that the parents may be depressed or traumatized by the changes in health and independence, and such moods will affect those who care for them. Grief and loss are dominant themes in narratives about caregiving and are to be expected (Hausman, 1979; McCarty, 1996; Shaw, 1987; Ziemba, 2002). Adult children are likely to report guilt, anger, depression, and role reversal (Bowers, 1987; Fischer, 1985). In one study, daughters used the term "role reversal" to define the experience of losing the prior support of the parent, in combination with the new demand to provide the safety net for the parents (Ziemba, 2002).
While empirical investigation is lacking, it is likely that others close to the caregiver could be affected by the caregiver's depressive symptoms, depression, and grief. Other family members might be a source of support and mitigate the negative impact on the primary caregiver, but could also be another source of conflict or a stressor for the primary caregiver due to their own distressed or negative reactions to the situation.
Social Ties
The social effects of caregiving include isolation (Aneshensel, Pearlin, & Schuler, 1993; Given & Given, 1991; Jepson, McCorkle, Adler, Nuamah, & Lusk, 1999) and disrupted relationships with other family members (Mellins et al., 1993), including conflict with one's own children (Franks & Stephens, 1996; Pruchno, Peters, & Burant, 1995).
Parent care has been proposed as a developmental task of the sibling network (Cicirelli, 1994; Goetting, 1986), but siblings are often a source of conflict for adult children taking care of elderly parents (Brody, Hoffman, Kleban, & Schoonover, 1989; Hausman, 1979; Suitor & Pillemer, 1993). Parent care can revive sibling rivalries and other long-standing family issues. Forty percent of adult children in one study reported conflict with another family member, usually a sibling who was not helping as expected (Strawbridge & Wallhagen, 1991). However, siblings are also likely to be identified as a major source of instrumental support (Suitor & Pillemer, 1996).
Often it is assumed that people from different ethnic or minority backgrounds enjoy the added assistance that comes from large, extended families, and values of family collectivism. However, such assumptions may lead to false security among health care professionals that the needs of family caregivers are being met. For example, the majority of studies reviewed by Dilworth-Anderson and colleagues (2002) that examined social support and culture indicated that non-Hispanic whites have a less diverse set of extended helpers than do minority caregivers. However, the studies did not support the common assumption that minority caregivers receive more informal social support. For example, when other factors were controlled, it was more likely that African Americans were sole providers of care and in greater need of formal support services.
Thus, family and extended family could be actual or potential resources to the primary caregiver, but could also represent additional sources of strain. Caregiving itself could lead to decreased socialization and isolation for the caregiver.
Work & Other Roles
Balancing multiple roles—including work—is a common and central task for family caregivers (McCarty, 1996). The typical caregiver of elderly parents is female, married, and employed full-time. Adult children may fill many other social roles, such as raising their own children, and pursuing a career. Work roles may be a source of added stress for some, but may provide others with information and referral, as well as an escape from caregiving by means of distraction and socialization (Barnes, Given, & Given, 1995; Reece et al., 1983). However, caregivers often make adjustments in employment status to facilitate caregiving, such as reducing or quitting work, or taking an early retirement (Guberman, Maheu, & Maille, 1992; Kingson & O' Grady-LeShane, 1993; Pohl, Given, Collins, & Given, 1994).
Another strategy to address the care needs of the aging parent is for the parent or child to move in with the other (Tennstedt, 1999; Ziemba, 2002). This has implications for other people in the household and typically requires adjustment to the new living arrangements. Thus, multiple roles—including work roles or childcare—may provide respite, distraction, or resources that offset the demands of caregiving. However, the constellation of benefits and conflicting demands of multiple roles will depend on the situation, and caregivers and their families may face difficult choices or periods of adjustment.
Physical Health
In contrast to the large volume of studies on the psychosocial effects of caregiving, there is less certainty as to the risks for physical health (Reese et al., 1994; Schulz et al., 1990) but caution is warranted. Health problems could result from the deleterious effects of stress on the immune system, resulting in less resistance to acute or chronic disease. Shulz and Beach (1999) found a 63% higher death rate in caregivers who reported role strain. The family could be at risk for "double trouble" if the caregiver's health is affected by caregiving demands.
Other Risks Over the Lifespan
In addition to health risks, caregiving can threaten financial well-being. In the short run, there may be additional costs of hired help, which can be very expensive (Grunfeld et al., 1997; Levine, 1999). Tennstedt (1999) reported analyses by Harrow et al. (1995), using a market value approach that estimated family care contributions at $9,552 per year.
Caregivers face other expenses when replacement costs of providing direct care services are considered. In the long run, many caregivers reduce work hours to provide care, take early retirement, or pass up promotions or career changes (Guberman et al., 1992; Kingson & O'Grady-LeShane, 1993). For women pursuing careers, the disruption caused by family caregiving could decrease total earning power, and divert energy and funds from the development of the caregivers' own retirement prospects (Grunfeld et al., 1997; Kingson & O' Grady-LeShane, 1993). In addition, care demands can disrupt work schedules, concentration, and productivity, thus placing the caregiver at risk of losing a job (Gottlieb, Kelloway, & Fraboni, 1994; Neal et al., 1993).
The Beneficial Effects of Caregiving
Most of the research to date has emphasized harmful consequences on caregivers of the elderly. Belief in the benefits of family caregiving helps to build a strong platform of support for caregivers as a result of a more positive outlook, and thus promotes family health (Louderback, 2000). Many caregivers do not report role strain or other negative consequences (Tennstedt, 1999). In life-span developmental approaches, care of elderly parents is often viewed as a developmental task of middle- to late-life through which the adult child gains maturity and wisdom for their own later years (e. g, Blenkner, 1965).
While caregiving has potential risks, real costs, and serious implications, it is simply unavoidable for many families when the call comes. As part of the human experience integral to family relationships, family caregiving is often not an option, but a certainty. Adult children feel their duty, and parent care is often assumed out of obligation.
Rewards of Caregiving
The most obvious benefit to family health is protection of the well being of the care recipient and the satisfaction of knowing that a parent was well cared for (NAC & AARP, 1997; Riedel, Fredman, & Langenberg, 1998). In a national survey, the majority of family caregivers (57%) described their experiences positively, using terms such as "rewarding" or "enjoyable" (NAC & AARP, 1997), and identified additional benefits of pride in doing a good deed, of making the care recipient happy, and of earning the care recipient's gratitude. Other common themes were fulfilling family obligations, and repaying parents.
Such rewards and benefits of caregiving accrue not only during the time spent caregiving, but increase in value long after the parent's death. A life course or developmental model suggests latent benefits for caregivers since they avoid guilt and find comfort in rewarding memories. A good resolution of the "filial crisis" means that adult children attain greater maturity and are better prepared for their own aging (Blenkner, 1965).
Greater emphasis on the ultimate or "spiritual" meaning of being a caregiver may be a more fruitful approach than focusing on costs. McLeod (1999) asserts that accepting the difficult aspects of caregiving is a realistic approach, and that for caregivers to grow from the event they must internalize the experience in terms of life goals and the importance of human, caring relationships.
Improved Family Relationships
The most salient and persistent influence on all aspects of caregiver burden is the quality of the relationship between caregiver and care recipient (Tennstedt, 1999). Caregiving can stress relationships, but it can also improve them. About a third of caregivers in one study reported an improvement in their relationships as a result of assuming a caregiver role (Ziemba, 2002). Spending time with the care recipient is another reward of caregiving (NAC & AARP, 1997). Likewise, whereas 40% of adult children named their siblings as a major source of conflict, 60% reported no such problems and some took pride in how siblings matured, and worked together to meet the parents' needs (Strawbridge & Wallhagen, 1991).
Action Plan for Health Professionals
The role of the health care professional is aimed primarily at helping the caregiver cope with the increased demands, and to help caregivers balance responsibilities to the care recipient, to themselves, and to other family members. Health professionals may find it helpful to choose from the many lifespan developmental and family systems frameworks to guide therapeutic interactions with adults involved in parent care (e. g., Bengtson & Allen, 1993; Blenkner, 1965; Kramer, 1993; Worthington, 1987). While general stress models highlight the hazards of caregiving, developmental and family systems theories are useful in that parent care is acknowledged as an important and temporary challenge to the family, and thus redirect emphasis to long-term benefits of caregiving as well as draw attention to the roles and needs of other family members.
It is helpful to distinguish between stress and a state of crisis. Caregiving can be viewed as normal family stress but with the potential to cause deleterious health effects on the caregiver and other family members if a state of crisis persists. The need for care can arise suddenly and dramatically, or can build gradually over many years. Or, sudden death of the parent may preclude the need for caregiving, but not for griefwork.
Health professionals with middle-aged clients or family practices need to be alert to the likelihood of caregiving of elderly parents as an emergent or future stressor on the adult child, with potential effects on the caregiver's health especially at midlife and beyond. Health care professionals also need to recognize that adult children may be responsible for the care of both parents, either at once, or sequentially. As a result, some adult children face cumulative loss and strain (Ziemba, 2002).
Adopt "Family-Friendly" Policies
Concerned health care professionals should invite family participation and assess family concerns. Respect for cultural diversity and family preferences mandates assessment of patient preferences for the presence and involvement of family members, especially concerning the procedures and roles of family members in major decisions. Policies supportive of cultural diversity also include awareness of gender roles and patterns of interaction with authority figures (such as with parents, or with health care professionals). Assessment of the family structure can potentially strengthen resources for the primary caregiver as well as open avenues to understanding the effects of the elder's illness on others in the family.
Strategies can be implemented to help patients and their families discuss caregiving concerns and to make health-related decisions. Studies suggest that caregivers in general fail to prepare, plan, or anticipate events associated with caregiving (Archbold, Stewart, Greenlick, & Harvath, 1990; Archbold et al., 1995; Horowitz, 1985; Pohl et al., 1994; Tennstedt, 1999). Health professionals can start by encouraging either the care recipient or the caregiver to formulate anticipatory strategies, such as Living Wills.
It takes an adjustment for many elderly parents to accept help from their children, for fear of becoming a burden to them, or from fear of losing independence, control, and privacy (Brakman, 1994; McCullough, Wilson, Teasdale, Kolpakchi, & Skelly, 1993; Motenko & Greenberg, 1995; Strandberg, Norberg, & Jansson, 2000). Adult children may be overprotective or conversely, might need to take charge in the presence of unsafe situations. Parents may even hide their infirmities from their children (Ziemba, 2002). Adult children may have negative memories of their own upbringing, and parent and child may not necessarily get along. Despite interpersonal conflict, adult children are often compelled by obligation to persist as caregivers. Therefore, health care professionals need to be sensitive to the perceptions and needs of care recipients and caregivers, in order to help both parties negotiate new roles and behaviors, and attain healthier outcomes for all involved.
Caregivers may be so concerned about their parents that they might be overlooking signs of trouble for other important family members. Health care professionals can inquire about the potential effects on others in the family, such as children who might be feeling ignored or left out.
Respect, Comfort & Counsel
The number one need of caregivers is to be appreciated for what they do and how they are feeling (Levine, 1999). Recognize and respect the significance of the caregivers' loss and emotions, including grief. Caregiving represents painful realities experienced amid a host of heavy emotions such as guilt, anxiety, worry, and frustration. These are normal reactions and it will take time to resolve them.
Inform & Guide
Caregivers often report a need for information (Levine, 1999; NAC, 1998). Learning needs may be simple or complex. Acquiring a sense of mastery can ease caregiving (Tennstedt, 1999). Caregivers may need help to access information and services. The health care system itself is often a source of frustration and stress for caregivers, due to gaps in the continuum of care and barriers to information. This problem could be especially intimidating to families with language barriers or cultural values prohibiting the questioning of authority figures. Caregivers need to be persistent in tracking down information and services that work for them. Good places for caregivers to start their search are the local Area Agency on Aging; social work departments in health care agencies; the Visiting Nurses Association or other home care provider; and libraries and bookstores. Ethnic, religious, and alternative communities often provide services and direction to their members.
There are numerous websites as well. "MEDLINEplus" is a consumer-oriented on-line reference available to the public on many aspects of health and is maintained by the National Library of Medicine and the National Institutes of Health (http://www.nlm.nih.gov). Under the heading of "Caregivers," MEDLINEplus contains linkages to advocacy sites, the latest research, and many other helpful resources (http://www.nlm.nih.gov/medlineplus/caregivers.html). Or, simply typing in "caregiving" in any on-line search engine will yield thousands of web links. Surfing through the first few should be enough to connect caregivers to on-line support (e. g., http://www.caregiving.com).
Promote Balancing Acts & Caregiver Self Care
Achieving and maintaining balance are important and central tasks of adult caregivers (Shyu, 2000). Help caregivers to evaluate options, set limits to their involvement, and dash the cherished myth of being all things to all people. Assist caregivers to recognize the importance of maintaining their own health and peace of mind to the greatest extent possible. Encourage opportunities for caregivers to reflect on the deeper meaning of caregiving and to maintain their spiritual health (McLeod, 1999).
Some of the adult "children" of the elderly are themselves elderly and at risk for health problems. Encourage caregivers to maintain check-ups and screening such as mammograms, etc. Explore and encourage the recruitment of other family members, friends and services to provide respite so that caregivers can renew their energies and outlook.
Build in Support for the Long Term
While there can be a great variation in the duration, intensity, and sequelae of the caregiving trajectory, the average length of time as a caregiver is four to five years (NAC & AARP, 1997; Strawbridge & Wallhagen, 1991). Be aware of the major transitions that caregivers may face, from combining households with the parent, to changing work status. Be alert to the potential for caregiver engulfment, burnout, and depression (Skaff & Pearlin, 1992). Caregivers may avoid seeking additional help because of beliefs that the problem will be quickly resolved, from unrealistic expectations of themselves, or from a simple lack of awareness of available services. Caregivers involved in individual or family counseling face better outcomes (Whitlatch, Zarit, & Eye, 1991).
Since caregivers find it helpful to talk with others who have been through similar problems (Suitor & Pillemer, 1996), encourage them and their family members to join caregiver support groups. There are many resources on caregiving, including support groups at local agencies, a wide range of self-help books in bookstores, and numerous virtual communities (e. g., http://www.caregiving.com).
Encourage Quality Family Time
Encourage opportunities for "quality family time," that is, recreational time with the care recipient, and don't leave out the grandchildren. Despite caregiving's bad reputation in the literature, this time can also be one of great meaning and enjoyment. Interventions aimed at family enrichment (e. g., Archbold et al., 1990; Archbold et al., 1995) enhance the caregiving experience and contribute to the ultimate aim of pleasant memories of time well spent.
Respite, Advocacy & the Health Care System
Last, but perhaps most important, engage in critical self evaluation of services provided to the elderly and their families. Advocate for family-friendly policies and procedures such as family conferences, flexible scheduling for office visits, house calls for frail elderly, workplace support for caregivers, and reduction of barriers to information and services. In addition, meeting the needs of caregivers requires improvement in the continuum of respite services and long-term care options available in the community.
Conclusion
In summary, taking care of elderly parents is an important event to adult children and their families. Health care professionals can enable adult children as caregivers through supportive and family-focused strategies. While health risks and benefits to other family members are not as well delineated as those for the primary caregiver, cautious inquiry is advisable in order to prevent secondary harm to the family unit. Involvement and recognition of the potential contributions of other family members may help to reduce the deleterious effects on the primary caregiver as well as to promote growth of other individuals in the family. Such concern and intervention can help families through a difficult time, strengthen family bonds, and promote comforting memories of their time together as a family.
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