ADULT CAREGIVING ISSUES

            by Dwight L Adams

            Due to the "graying of America," the issues of caregiving for adult family members becomes a serious future concern. By the year 2010, it is estimated that the AVERAGE U.S. family will consist of 5 generations living TOGETHER! Spread over this and the next lesson, you'll read concerning the very important area of caregiving in the United States:

I. The Sandwich Generation

            Role strain in the adult child caregivers has shown to be a significant source of burden, especially the "sandwich generation," those individuals who are taking care of both younger and older relatives (most often parents and children).

            The literature suggests that unpaid family caregivers, who are impacted emotionally, socially and financially, form the bulk of the caregivers to the frail elderly in America.

            Huston and Rempel (1989) deal with research concepts in evaluation of 1) how interpersonal attitudes and dispositions develop and 2) how these developed dispositions can influence the participant's behavior towards others deemed close (in family as well as in other close bonds).

            Individuals in a group influence each other; in close relationships "...each person's overt behavior affects other members thoughts, feelings and behaviors...[this] extends over a considerable period of time." The agreement over time between parties provides social support which produces shared perceptions and positive affect. This leads to the desire of the participants to share more time and more experiences together. The context of the happenings may be conducive or destructive to this growth of the relationship.

            As a result of numerous experiences in context, interpersonal attitudes are developed. People development trust or love through a series of experiences that have a cumulative effect. Trust can build via belief that the other is sincere and benevolent and will continue to be so in the future.

            Obligation may come from 1) the parent's dependence 2) the need to reciprocate for earlier care given to the child 3) the sense that there are few or no alternatives 4) women, especially, may feel obligated due to their socialization as nurturers and economic constraints (the woman's job being "less important" than the man's). For the elderly, 71% (Blieszner & Mancini, 1987) report that it is normal for adult children to visit them out of a sense of duty.

            Discretionary motivation such as affection, closeness, and enjoyment of the relationship may aid in caregiving. Abel (1986) suggests that the mother-daughter bond may contribute to discretionary motives for giving care, and throughout the life course studies suggest that mother-daughter interaction is normally more frequent with more emotional attachment than is father-son or even mother-son relationships. A review of the literature suggests that filial obligation has suffered an "historical erosion" and that discretionary motives are probably more predictive now, but both feelings will emerge. (Walker, et al., 1990)

            Both types of motives are equally salient to some individuals while neither motive is particularly influential to a few. This may be due to "socially desirable" answers coming out.This study backs up earlier work by Nydegger (1883) which states that caregiving is motivated "...not solely by goodwill but also by a sense of duty." The findings also are consistent with Jonas & Wellin (1980) that the elderly perceive aid in ways "...that minimize their dependence...Perceiving assistance as social and discretionary on the part of the care provider may reduce the costs of accepting it." Mothers perceiving little discretionary motive also perceived that they had been receiving aid longer and experienced less intimacy with their daughters.

(Walker, et al., 1990).

            Strongly promoting family care has unintended negative consequences; it can impede efforts to promote income and employment equality for women, delay needed quality improvements in institutional care, and increase the guilt felt by relatives of institutionalized family members. Rather than a single focus on family care, we need to work for parallel improvements in the quality and acceptability of institutional care. (Strawbridge & Wallhagen, 1992)

            It is likely that increasing numbers of elderly will continue to move into the homes of their adult children. Areas identified as major factors in multi-generational households included dependency, sibling relationships, depression, demanding and egocentric behavior. Factors to consider during family therapy include respite care, age interdependence, dignity, provision of care, decision-making processes, and involvement of all members of the household in planning for the future. (Feinauer, Lund & Miller, 1987)

            Older adults frequently cope with difficult times by turning to significant others for assistance. Particular kinds of stressful experiences may actually promote greater isolation from others. Chronic strain tends to promote distrust of others, and that distrust in turn leads to greater isolation from network members. Not all stressors are involved in this process. In particular, recent deaths are not related significantly to distrust or to social isolation. The process leading to less contact with others is more likely to involve older adults in lower social status positions. (Krause, 1991)

            The older one becomes, the less likely one is to send support and more likely one is to receive it. Results show that both support-sending and support-receiving decline with age. The respondents report giving more support than they receive until age 85+. This pattern applies more to exchanges with family members, as all forms of role reversal are less likely in exchanges with non-family. (Organ, Schuster & Butler, 1991)

            Motivators and inhibitors of attitudes of filial obligation. Obligation is not simply a product of affection but that the degree of obligation is also explained by such structural and demographic factors as distance and role conflict. Associations of predictor variables with filial obligation vary by parent type and by gender of the adult child. (Finley, Roberts & Banahan, 1988)

            Spouse and child caregivers vary in care provisions

and caregiving distress (burden and mental distress outcomes); spouses display fewer adverse effects. (Young, 1989)    When the caregiver is wife to the patient, it is well recognized in the literature that spousal interactions differ in kind and extent from those characterizing child-parent relationships. Wives are also now more likely to be in the work force than before (Denton et al., 1990) with the result of an increased burden from handling both employment and caregiving responsibilities.

            When the caregiver is a daughter or daughter-in-law, employment of such a caregiver has been shown to qualitatively change the type of contributions they are able to make to the well-being of elderly parents; employment sacrifices have been made for meeting caregiving requirements and combining both work and caregiving may lead to role overload (Matthews, et al., 1989; Pett, et al., 1988; Stone & Short, 1990). National economic changes suggest that more and more the elderly will find themselves in homes with their adult children, as the children "...constitute the first and often the only resource" to turn to (Feinauer, et al., 1987) and when patients' mobility is impaired (Meyer & Cromley, 1989).

            Gender relationships will simultaneously impact caregiving outcomes; when assessing strain of major caregiving groups, daughters exceed wives and husbands in distress. (Young, 1989).

            Providing assistance to an older person over an extended time period undermines the elder helper relationship. Despite evidence that extended helping is difficult, the helpers in this panel continued to respond to the older person's need for assistance. (Stoller & Pugliesi, 1989)

            The high level of fertility among women during the 1950's will result in greater proportions of future elderly persons having surviving children. Declines in mortality, coupled with increases in rates of marriage, increase the probability that both men and women will have spouses surviving in their old age. (Himes, 1992)

            Spouse and adult children in shared households experience similar levels of care-related strain. However, comparison of adult children in shared and separate households show considerable cross-setting difference in strain, with those in shared households having significantly greater activity restriction but less relationship strain. (Deimling, Bass, Townsend & Noelker, 1989)

            Spousal caregivers devote large amounts of time to caregiving, and husbands spend no less time than wives. Most caregivers receive little assistance from other family members and friends, but husbands receive more than others. Employment does not affect the amount of paid help received by adult daughters. (Enright, 1991)

            A multifactorial model of caregiving strain. Work disruptions associated with caregiving significantly affected caregiving strain and the perceived likelihood of job termination. Work interference was in turn affected by the care recipient's level of impairment and the perceived adequacy of the support received. Respondents with more flexible job responsibilities reported lower levels of work interference than did other respondents. (Scharlach, Sobel & Roberts, 1991)

            Parent care experiences of five groups of daughters (married, remarried, separated/divorced, widowed, and never married). Women with husbands had more socio-emotional and instrumental support, much higher incomes, less financial strain from caregiving, and less depression. They felt their own particular marital status made caregiving easier than did the three groups of not-married women. (Brody, Litvin, Hoffman & Kleban, 1992)

II. Gender in Caregiving

            Male and female caregivers differ in care provision and caregiving distress (burden and mental distress outcomes); males display fewer adverse effects. (Young, 1989)       Gender is important since the sexes differ on the kind of caregiving provided; men usually give smaller time and intimacy commitments and they are frequently in the secondary, rather than primary, caregiver role--even for their own parents.

            One study (Young, 1989) disclosed that the extent of care provided (hours of assistance) did NOT relate to adverse caregiver outcomes. Burden and role strain DID vary according to gender and the relationship to the patient. Women experienced greater strain regardless of whether they were caring for a physically or mentally disabled person. Even husbands and wives significantly differed in outcomes. Significant differences were found in the patient-caregiver dyad due to closeness of relationship; wives and daughters provided similar care, yet did not suffer uniform adverse effect. Daughters were significantly more adversely affected than any others in this study.

            Preliminary analysis indicates that caregiver gender and health is associated with their perception of burden. Additionally, elders whose caregiver is female report better health than those with male caregivers. (Paton, Applegate & Elam)

            Women, non-spousal caregivers, and daughters, in particular, experienced the most severe aftereffects. Patient-caregiver relationship is an essential component of caregiver strain. (Young & Kahana, 1989)

            Net of other caregiver and care-receiver characteristics, daughters were 3.22 times more likely than sons to provide ADL (assistance with activities of daily living) assistance and 2.56 times more likely to provide IADL (assistance with instrumental activities of daily living) assistance. (Dwyer & Coward, 1991)

            A distinguishing feature of family caregivers is that the majority are women. A greater involvement of men may be needed to cope with future demands, including expanded need for caregivers, a drop in the size of the American family with fewer children available, and an expected increase in the number of women entering professional roles. (Mathew, Mattocks & Slatt)

            For men engaged in caregiving tasks, the men report having found emotional gratification an important motivating factor, and they tended to ascribe to themselves many affective traits usually associated with the female role. (Kaye & Applegate, 1990)

III. Family Relationship Status in Caregiving

            The analysis revealed that siblings and friends provided the caregivers with approximately the same amount of support; however, siblings were by far the greatest source of hassles. Both logistic regression and qualitative analyses showed that the associate's caregiving experience was associated with a greater likelihood of providing support, as was emotional closeness. The associate's caregiving experience and emotional closeness were associated with a lower likelihood that an individual would be a source of hassles. Geographic distance also reduced the likelihood that an associate would be a source of hassles - network members who lived further away were more likely to be reported as sources of hassles. (Suitor & Pillemer)

            Filial caregivers' views of their own and their siblings' costs and contributions to the care of their parents. The respondents viewed their siblings' responses to the parents' needs as remarkably similar to their own, in spite of there being no actual similarity. Despite these perceived similarities, however, respondents perceived their siblings as contributing less than themselves, gaining less satisfaction, feeling freer to alter their caregiving, and being resistant to increasing their relative contributions. In order of importance, the extent of contact between the siblings, their feelings of closeness, the extent of parents' needs, their gender, the extent of resources spent, and personal regard for their siblings were significant predictors of these egocentrically biased perceptions. These egocentrically biased perceptions were important predictors of personal regard for their siblings. (Lerner, Somers, Reid, Chiriboga & Tierney, 1991)

            Caregivers reported the most and brothers the least service provision and strain; sisters fell in between, and also equaled caregivers in strain from inter-sibling problems. Negative inter-sibling interactions are associated with less emotional closeness in the families and the mothers' greater care needs. (Brody, Hoffman, Kleban & Schoonover, 1989)

IV. Burden in Caregiving

            Numerous studies have developed the issue of burdens on the caregivers to the elderly, including measurements of dwindling resources of time, energy and money (Bunting, 1989; Fitting, et al., 1986; Gwyther & George, 1986). Economic trails of the caregiver role have been documented (Cohen & Eisdorfer, 1986) as well as the problems with social participation and mental health due to the caregiving role (George & Gwyther, 1986).

            Caregivers are "...likely to be disadvantaged with respect to social, physical, and financial resources than is the case of the general population" (Matthews, 1988).

Deterioration of physical health, immune system functioning, health care utilization, and psychiatric condition have been shown to be associated with prolonged caregiving (Schultz, et al., 1990). Caregivers' deterioration of health is also associated with higher institutionalization rates of the patient, and, in some cases, even the caregiver (Wilson, et al., 1987).

            Sacrifices on the caregiver's part for the benefit of the patient are often documented in studies, especially with respect to delaying patient entry into nursing homes or other institutional care facilities (Arling & McAuley, 1983; Chenoweth & Spencer, 1986; Clip, et al., 1986).

            Longitudinal studies have been made observing some caregivers who may persist in the caregiving role beyond the limits of their own health in order to keep the patient home rather than be institutionalized (Colerick & George, 1986; Collins et al., 1989). Depression in caregivers, assessed as stemming from the caregiving role, has also been addressed (Cohen & Eisdorfer, 1988; Townsend, et al., 1989).

            In general, their levels of depression, stress & burden were high at the baseline evaluation, but their physical health was, overall, better than anticipated. Both personality & mood affect how stress is experienced, leading him to conclude that distress occurs most in vulnerable individuals. (Koin, Walsh, Gallagher-Thompson & Vitaliano)

            Results show no overall change in mean levels of depression or burden. Depression at Time 1 was not correlated with depression at Time 2. Burden at Time 1 was highly correlated with Burden at Time 2. No relationship of caregiving status, initial health status, level of care, of generation to change in depression. Burden, However was related to generation and caregiver status, with primary caregivers more burdened than non-primary or non-caregivers, with burden increasing over time for primary caregivers but not for others. (Trickett, Gatz & Karel)

            Significant levels of anger are expressed by caregivers of dementia patients.(Florsheim, et al.)

            Status transitions and future outlook. As predicted, future outlook had a powerful association with dyadic conflict. Other strong predictors of conflict for care receivers were current state of happiness and changes in the relationship over a 3-year period. For caregiver, conflict was associated with care receivers' lack of social participation with family and friends, and changes in dyadic relationship. (Litvin, 1992)

            Family conflict is an overlooked yet potentially critical component of the caregiving experience. In a study of 100 Adult child caregivers, 40% were experiencing relatively serious conflict with another family member, usually a sibling. Most conflict arose because the relative failed to provide sufficient help. Caregivers experiencing family conflict had significantly higher perceived burden and poorer mental health than did caregivers without conflict. (Strawbridge & Wallhagen, 1991)

            Social exchange theory identifies three relationship types: intrinsic (45%), ambivalent (34%), and conflicted (21%). These types differ in the extent to which the women receive rewards from interacting with their partner, experience costs in their interaction, handle conflicts that arise in their relationship, and express feelings of concern for each other. Daughters in intrinsic pairs have fewer children and shorter caregiving histories than daughters in ambivalent or conflicted pairs. (Walker & Allen, 1991)

            Daughters generally rated their mothers more negatively than themselves. Within this pattern of generally negative evaluations, varying types of impairment function differently. Functional impairment is not related to assessments of mothers' personalities, whereas psychological and cognitive impairments are. (Albert, Litvin, Kleban & Brody)

            Objective stressor, caregiver resources, and subjective appraisal of caregiving (operationalized as caregiving satisfaction and burden) were studied. Among adult children, high levels of caregiving behavior resulted in both greater caregiving satisfaction and burden. Burden, in turn, was related to depression in both groups but, among adult child caregivers, positive affect was not affected by caregiving satisfaction. (Lawton, Moss, Kleban, Glicksman & Rovine, 1991

            Revealed three factors for mothers, Helplessness, Feeling Loved, and Anger; and three factors for daughters: Insufficient Time, Frustration, and Anxiety. Limited influence of demographic variables and significant influence of situational variables. Of particular importance for daughters is the role of perceived intimacy with the mother: Daughter with better relationships experience fewer caregiving costs. Mothers' health plays a critical role in the outcomes of care receiving: Mothers in poorer health experience greater helplessness and are less likely to feel loved. (Walker, Martin & Jones, 1992)

            The multiple roles of caregivers may impact the quality of care given and the caregiver well-being both in a positive and a negative manner; the roles played outside the family being more associated with positive caregiver well-being than intra-family roles (Stoller & Pugliesi, 1989).

            Social exchange theory identifies three relationship types: intrinsic (45%), ambivalent (34%), and conflicted (21%). These types differ in the extent to which the women receive rewards from interacting with their partner, experience costs in their interaction, handle conflicts that arise in their relationship, and express feelings of concern for each other. Daughters in intrinsic pairs have fewer children and shorter caregiving histories than daughters in ambivalent or conflicted pairs. (Walker & Allen, 1991)

            Two generations agreed on the primary person in each network and on the overall hierarchy of sources of support, but they differed on the two networks' size, specific composition, and members' relative centrality. Suggesting the need to distinguish this network from the general caregiving network. (Townsend & Poulshock, 1986)

            Status transitions and future outlook: As predicted, future outlook had a powerful association with dyadic conflict. Other strong predictors of conflict for care receivers were current state of happiness and changes in the relationship over a 3-year period.

V. Up lifts in Caregiving

            Not all factors associated with caregiving are negative to all caregivers. Uplifts, satisfactions and positive events have been measured among some caregivers (Kinney & Stephens, 1989; Moss, et al., 1987; Stephens, et al., 1990; Stoller & Pugliesi, 1989).

            Objective stressor, caregiver resources, and subjective appraisal of caregiving (operationalized as caregiving satisfaction and burden) were studied. Among adult children, high levels of caregiving behavior resulted in both greater caregiving satisfaction and burden. Burden, in turn, was related to depression in both groups but, among adult child caregivers, positive affect was not affected by caregiving satisfaction. (Lawton, Moss, Kleban, Glicksman & Rovine, 1991)

VI. The Care Recipients' Viewpoint

            Literature reviews as early as 1965 show that parents, especially mothers, expect help from their adult offspring. Not surprisingly, adult children report a sense of responsibility to their parents. But the association between these feelings and actions taken have not previously been studied, nor has the correlation between the quality of the feelings and the quality of the results. It has, however, been shown that unrealistic expectations about caregiving on the daughters' part has been correlated to higher burden by denying the daughters own needs.

(Walker, et al., 1990)

            "While motives for caregiving are unrelated to most demographic variables, caregiving motives are related to intimacy, a factor intrinsic to the relationship." Mothers who believed daughters wanted to give care also reported more intimacy. The "sense of duty" reported by Blenker (1965) was not supported in this study. Obligatory motives were associated in this study with intimacy only when they coexisted with high levels of discretionary motives. (Walker, et al., 1990).

            Preliminary analysis indicates that caregiver gender and health is associated with their perception of burden. Additionally, elders whose caregiver is female report better health than those with male caregivers. (Paton, Applegate & Elam)

VII. Changes Over Time in Caregiving Relationships

            Huston (1989) shows that people tend to view events in their relationships in clusters of patterns of behaviors set in time (Ex: She laughed at my jokes during lunch -short time- or "He hasn't helped with the dishes since we've been married" -long time span view)."Behaviors may be general because the stream of behavior has been partitioned into large, temporally extended units or because they encompass multiple actions at different points in time."

            Cognition and emotions can range over many behaviors (ex: anger can "spill over" into other phases of life than the original irritant) and impact behavior streams and influence the viewpoints of loved ones. The attributions, therefore, that one may give to a significant other are made up of the viewer's own emotions and cognition as well as the evaluated history of the others behaviors, as set in the viewers time relation. These developed attributions concern stability (how likely the attributed cause will continue to operate in similar circumstances) and globality (whether the cause will produce similar effects in other situations).

The amount of actual caregiving functions performed, not just the time spent, varied among respondents and is worthy of consideration when predicting outcomes. Therefore, the outcomes recorded in this paper are considered to be based upon the issues of gender and relationship status after passing through the varying nature of the caregiving role.

Walker, A. J. & Allen, K. R. (1991). Relationships between caregiving daughters and their elderly mothers, The   Gerontologist, 31(3), 389-396.

Walker, A. J., Martin, S. S. K. & Jones, L. L. (1992). The benefits and costs of caregiving an care receiving for daughters and mothers, Journal of Gerontology:Social   Sciences, 47(30, S130-139.

Walker, A. J. , Pratt, C. C., Shin, H., & Jones, L. L. (1990) Motives for parental caregiving and relationship quality, Family Relations, 39, 51-56.

Wilson, D., Bernard, J. E. J. & Napoleon, N. (1987). Caregivers' perceived health and its impact on institutionalization: A retrospective study of inpatient respite users, paper.

Young, R. F. & Kahana, E. (1989). Specifying caregiver    outcomes: Gender and relationship aspects of caregiving strain, The Gerontologist, 29(5), 660-666.

Zarit, S. H., Todd, P. A. & Zarit, J. M. (1986). The Gerontologist, 26(3), 260-266.

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Literature Review

      Papers Presented at GSA 1991

Bodner, J. C., Hannan, M. b. & Kiecolt-Glaser (1991).The impact of institutionalization on caregiver health and well-being.

Caserta, M. S., Lund, D. A. & Wright, S. D. (1919). Correlates of dimensions of the caregiver burden inventory.

Cicirelli, V. G. (1991). The attachment model of caregiving behavior.

Duhamel, L. & Moss, M. S. (1991). Daughter-in-law caregivers: Some observations.

Florsheim, M. et al. (1991). Anger in family caregivers of Alzheimer patients.

France, A. C., Alpher, V. S. & Vanzant, M. S. (1991). Interpersonal attributes of hostility in caregivers: A comparison of a community sample and support group caregivers.

Gallagher-Thompson, D. (1991)Interrelationships among caregivers' stress, physical health, and mental health.

Garcia, C. (1991). The myth of the extended family.

Gebhard, T. (1991). Reaction formation and conflict tactics: Coping with the challenge of caring for the elderly.

Haley, W.E. et al. (1991). Caregiving in context: Work, multiple roles, and life stress.

Keech, E. (1991). Caregiver burden in a dyad and system type of caregiving.

Morris, D. C. (1991). Caregivers and caregiving in Middleton: a survey analysis.

O'Bryant, S. L., Straw, L. B. 7 Edgar, E. D. (1991). Comparisons of the widowed caregivers with that of widowed non-caregivers.

Passuth, P. M. (1991). Coming to terms: Parent-Child relations in later life.

Paton, R. N., Applegate W., & Elam, J. (1991). The importance of gender in understanding caregiver perception of burden.

Quayhagen, M. et al. (1991). Coping with caregiving: Burnout an abuse.

Silverstein, M. & Bengtson, V. L. (1991). Do close parent-child relations reduce the mortality risk of older patients? A test of the direct & buffering effects of intergenerational affection.

Stoller, E. P. & Cutler, S. J. (1991). The impact of gender on configurations of care among married couples.

Suitor, J. J. & Pillemer, K. (1991). Sources of support or stress for married daughters caring for elderly parents suffering from dementia.

Thompson, E. H. et al. (1991). Components of caregiver burden and dimensions of social support in family caregivers.

Trickett, P., Gatz, M. & Karel, M. (1991) A longitudinal follow-up of depression and burden in caregiving and noncaregiving relatives of elderly family members.

Wright, L. Beisecker, S. & Kasal, S. (1991). Benefits and barriers to Adult day care: Perceptions of family caregivers of individuals with Alzheimer's disease.