- Email: [email protected]
Caregiving Issues: Covering the Spectrum From Detection to End of Life
EDITORIAL
Caregiving Issues: Covering the Spectrum From Detection to End of Life Dolores Gallagher-Thompson, Ph.D. “Only a life lived for others is a life worthwhile.”—Albert Einstein
I
n the past decade, there has been tremendous growth in the research focusing on family caregiving, particularly among those caring for a relative with Alzheimer disease (AD) or another form of dementia. Studies have primarily been descriptive, documenting ways in which caregivers differ from noncaregivers1 or ways in which caregivers of patients with AD differ from those caring for relatives with other psychiatric (e.g., schizophrenia) or medical (e.g., cancer) diseases.2 A recent review by Schulz and Martire3 echoes what prior reviews found, namely, that dementia caregivers are at greater risk for psychiatric disorders and symptoms (particularly depression and anxiety), as well as self-reported negative health effects, than demographically similar caregivers of elders with primarily physical (not cognitive) disorders. Ory and colleagues reported similar findings and also commented on the impact of relationship of the caregiver to the care recipient.4 They emphasized the need for more research on differences in the kinds of negative outcomes experienced by spouses compared with adult children, who assume very different roles in the caregiving process. Although this literature has led to many valuable insights regarding the impact of family caregiving on both mental and physical health, there are some notable limitations that have only recently begun to be addressed. First, most of the research before 2000 focused on
non-Hispanic whites, most of whom were middleaged or older women caring for parents, spouses, or1 parents-in-law. Persons of color, men caregivers, and other individuals (e.g., adult grandchildren or close friends) were not routinely recruited for studies5,6 despite evidence of their increasing assumption of caregiving roles. Second, few studies focused on the impact of caregiving on actual physical or mental health problems or biologic markers of physical or mental health status.7 Rather, most rely on self-reported mental or physical health status, which can be subject to measurement error, compared with use of more objective methods of psychiatric evaluation such as diagnostic interviews and/or results of laboratory tests or confirmed medical diagnoses.3,7 One of the few exceptions to this is the literature on the prevalence of depressive diagnoses, and depressive symptoms, in family caregivers; both have been documented to occur to a greater extent in caregivers compared with noncaregivers. Most studies report 30%–50% prevalence of depressive diagnoses and even higher rates of self-reported depressive symptoms among caregivers3 even across ethnic group comparisons.6 Third, although there is a growing body of information about advance directives and end-of-life care in the caregiving literature, there have been few systematic studies of how end-of-life decisions are actually made in this population8 and what factors might influence family members in one direction or another on this matter. Finally, relatively few theoretically based intervention studies, using a randomized clinical trial meth-
From the Department of Psychiatry & Behavioral Sciences, Stanford University School of Medicine, Stanford, California; and the Older Adult and Family Center, VA Palo Alto Health Care System, Palo Alto, California. Send correspondence and reprint requests to Dolores Gallagher-Thompson, 79 Willow Road, 182 C/MP, Menlo Park, CA 94025; e-mail: [email protected]. © 2006 American Association for Geriatric Psychiatry
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Editorial odology, have been conducted to determine in a rigorous manner what kinds of interventions are most helpful to specific subgroups of caregivers. More often, quasiexperimental studies are reported, or other methodological problems limit the confidence one can place in the results.9 –12 The seven studies in this special section address one or more of these limitations. The first two articles present original research on physiological indicators of chronic caregiving stress: Aschbacher et al.13 and McCallum et al.14 Aschbacher et al.13 demonstrated a relationship between the global clinical rating of dementia in care recipients and plasma level of the factor D-dimer in their spousal caregivers. The more elevated D-dimer is, the greater the likelihood of thrombus formation and the occurrence of other cardiovascular complications. Not only do spousal caregivers tend to have elevated levels of D-dimer when compared with noncaregivers, but also the greater the severity of dementia in the care recipient, the greater the elevated level of the plasma D-dimer. The authors also introduced an acute laboratory stress by requesting the caregivers to give a three-minute improvised speech on a topic that was not assigned in advance. The positive relationship between spousal caregiver level of D-dimer and severity of dementia in the spouse was even more prominent. Because one of the primary goals of this work was to ascertain the magnitude of the dementia severity effect on the caregivers’ D-dimer, the average predicted D-dimer value was obtained for each level of dementia along with the 95% confidence interval. A graphic representation of these values illustrates a steady increase in D-dimer across the entire range of care recipient dementia. This was apparent for the initial level of D-dimer and the change in D-dimer after the acute stress of an improvised three-minute speech. This study provides yet another objective finding for the comparatively small body of accumulating evidence in support of the argument that the sustained stress of family caregiving can, under certain circumstances, lead to disruption of physiological functioning and subsequent morbidity or even mortality. In this instance, the data suggest that as the dementia progresses and the burden of care increases, a specific substance in circulating plasma, which is a precursor to blood coagulation, becomes
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elevated in the caregiver, thus increasing the risk of thrombus formation and negative cardiovascular events. The clinical relevance of this work is readily apparent, and like many good studies do, it raises a number of important avenues for further research. For example, at what level of dementia severity is the procoagulant factor triggered? What interventions might be helpful in counteracting D-dimer elevations, and at what point should they be implemented? Replication of these findings using larger samples that can be followed longitudinally would be extremely helpful in addressing these and other questions. The second paper in this set by McCallum et al.14 adds to the small but growing body of current information on dysregulation of cortisol as a negative physiological response to stress among family caregivers.15,16 It also adds significant new information to the literature on how cultural factors influence the responsiveness of black women to being in the role of dementia caregiver. In fact, studying both ethnicity and physiological stress responses at the same time is a unique feature of this work. In this study of 54 caregivers (30 blacks and 24 Euro-Americans) and 63 noncaregivers (48 blacks and 15 Euro-Americans), cortisol was obtained from saliva; as is typical, five samples were collected daily for two consecutive days and findings were averaged for greater reliability. Measures were also taken of depressive symptoms, perceived stress, and other more culturally determined indices, including religious coping, cultural justifications for caregiving, and stress-related growth. They found, as expected, that scores on the culturally related variables were higher in the black caregivers, indicating more ability to experience positive aspects of caregiving, despite some stress as well, compared with the Euro-American sample. At the same time, both groups of caregivers were comparable on indices of depressive symptoms and perceived stress with average scores in the moderate ranges of intensity. Contrary to expectations, they also found that flatter diurnal cortisol slopes were present in both black samples compared with the Euro-Americans, suggesting that there is not a straightforward relationship between caregiving and cortisol dysregulation. This finding is very similar to that reported in the April 2006 issue of the Journal by Gallagher-Thompson and colleagues with Hispanic white samples of caregivers
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Gallagher-Thompson and noncaregivers.16 Both research groups posited that this finding may be either the result of or related to broader health disparities such as more serious comorbid medical illnesses in the minority samples, which was not investigated directly in either study and which should be the subject of future research. McCallum et al.’s findings14 lend further theoretical support to the use of a sociocultural stress and coping model17 when studying ethnically and/or culturally diverse samples of caregivers. That model emphasizes the role of cultural factors in determining caregivers’ responses—specifically, that ethnicity and cultural influences impact stress-related beliefs; these in turn affect mental and physical health outcomes. The model recommends that direct measurement of cultural beliefs and values be done, in contrast to prior thought on this matter, which used race or ethnicity as a simple “proxy” variable to examine culture. In the McCallum et al. report, they included direct measures of cultural values and beliefs, including, for example, a scale of “stress related growth,” to extend prior findings that blacks, as well as other nonwhite groups, do report more positive aspects of caregiving compared with their white counterparts.14 This has been reported by other research groups as well18,19 and suggests that further research is needed on how both positive and negative affects and views can coexist in the same individuals and how they may each independently affect mental and physical health outcomes. In the third paper in this set, by Gallagher-Thompson et al.,20 the focus is on effective recruitment strategies to engage Chinese caregivers in intervention research. This work stemmed partially from the Surgeon General’s report,21 which highlighted the fact that mental health services were being underused by ethnic minorities—although the need for such services was clearly in evidence. The report further encouraged research to identify the basis for disparities between availability and accessibility of services to minority groups. A number of explanatory factors have been considered for this discrepancy, including the appropriateness of recruiting strategies. The relevance of this issue for black and Hispanic American caregivers has been addressed in recent papers.22–24 Before the work presented here, however, there has been very little focus on the importance of how to recruit Chinese and Chinese Americans into dementia research. Studies by Guo et
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al.25 and Hinton et al.26 provided the first empiric data on this topic that emphasized the role of Chinese cultural values (filial piety, saving “face,” and avoiding stigma associated with “mental illness”) as critical factors to consider. Against this backdrop, the third paper in this set was conceptualized. The authors compared the effectiveness of three strategies used to recruit both white and Chinese American caregivers into research programs providing services to alleviate caregiver stress. Two of these were relatively impersonal: media advertisements (e.g., flyers, newspaper articles, spot ads on TV and radio, and so on) and information presented at formal talks, community workshops, and health fairs about the relevance of the research and how to avail oneself of the services provided. The third was more consumer-oriented, involving multiple contacts with Chinese health and mental health service providers who already had established trusting relationships with Chinese elders and their families. As expected, a greater proportion of whites than Chinese Americans enrolled in research, overall. There was also a significant strategy by ethnicity interaction: success of nonprofessional strategies was extremely low for the Chinese Americans, but highest of the three strategies for the whites. In contrast, and consistent with Chinese cultural values and beliefs, the most successful category for them was the professional (50⫹%). In other words, enrollment in research was more likely to happen when the study was presented in a culturally appropriate way by trusted Chinese professionals who understood its value and could communicate that to the caregivers. Consistent with other findings on successful outreach strategies for ethnic and culturally diverse groups, these results raise suggestions about allocation of resources for recruitment into future studies. For example, funds would appear to be better spent getting out into the community and networking with “cultural brokers” for that community versus investing in costly advertisements or using passive mechanisms such as posting flyers and expecting potential subjects to initiate contact. Whites, on the other hand, appear to respond well to media-based and similar approaches. This may reflect culture-specific differences in attitudes involving health and community institutions; there is perhaps less need to develop strong feelings of trust about health institutions and health services research in the latter group.
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Editorial In the fourth paper in this series, Rabinowitz et al. performed moderator analyses to determine if caregivers’ reported self-efficacy at baseline (before participation in an intervention study for distressed women dementia caregivers) would predict differential treatment responsiveness.27 The inclusion of moderator analyses is an important advance in intervention research because it enables one to identify baseline characteristics associated with either positive or negative outcomes. Typically, intervention studies do not include such analyses, but rather focus on simple main effects of treatment. Exceptions such as the work of Coon et al.28 are notable. In that study, the focus was also on identifying moderators of change, although from a different conceptual perspective. Coon et al. determined that those with a certain characteristic “style” of handling frustration and anger responded differentially to the two forms of psychoeducational programs being studied: those with an “anger-in” style responded better to the depression management program, whereas those with an “anger-out” style responded better to the anger management program.28 This led to suggestions for both clinical management and future research, because personality style variables have not typically been included in caregiver studies. Rabinowitz and colleagues27 similarly wanted to determine if certain specific caregiver characteristics would predict positive response to specific treatments so that effective preintervention screening methods could be implemented that could guide both clinical work and future research. To determine whether baseline self-efficacy (SE) would identify caregivers most likely to respond to the interventions being evaluated, S-E in three conceptually distinct domains was measured: obtaining respite, controlling upsetting thoughts about caregiving, and responding to disruptive care-recipient behaviors. Outcome measures included depressive symptoms, anxiety, use of adaptive coping strategies, and increase in perceived social support. The sample consisted of 213 female dementia caregivers, being the same sample used at the Palo Alto, CA, site of the REACH multisite collaborative study and building on the main outcomes reported by Gallagher-Thompson et al.29 Findings indicated that low baseline SE for the first two domains moderated the relationship between intervention condition and change in depressive symptoms, anxiety, and per-
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ceived social support. Baseline SE for responding to disruptive behaviors did not moderate the relationship between intervention condition and any of the outcome measures employed. In all cases, lower SE at baseline predicted significantly greater improvement in caregivers randomly assigned to the psychoeducational treatment condition compared with the support group control condition, suggesting that a skills-based intervention program is most effective for those with low skill levels to begin with. Although this may seem intuitively obvious, this finding has not been heretofore empirically supported. In the fifth paper in the series, Maust et al. reported some findings from the large Maryland Assisted Living Study (MD-AL) in which assisted-living facilities in Maryland were randomly selected stratifying by their size.30 A team of a geriatric psychiatrist, a nurse practitioner, and a psychometric technician visited each facility and assessed targeted patients for dementia. These residents were then classified as having or not having dementia. Comparisons were made with formal caregivers’ impressions of the diagnosis. Logistic regressions were completed to identify factors that predicted awareness of dementia on the part of the staff and also whether the residents were in treatment appropriate for dementia. Two-thirds of the residents worked up had dementia. Roughly 25% of these were unrecognized as having dementia by the caregivers. Of the 64 residents in the study without dementia, 11 were falsely identified by the caregivers as demented. Being male, having a higher Mini-Mental State Examination (MMSE) score, fewer neuropsychiatric symptoms, and higher instrumental activities of daily living were all associated with unawareness of dementia. Twenty of the 133 residents with dementia were receiving no treatment. Family or caregiver unawareness, higher MMSE score, and being female were associated with not receiving treatment. Not surprisingly, caregivers are more likely to overlook the possibility of dementia in residents who present few day-to-day problems. It is also not surprising that family unawareness of dementia was associated with a failure to treat dementia. This suggests that family advocacy is important in influencing treatment decisions. As more effective treatments for dementia are developed, it will become even more important to develop economic ways of identifying residents with dementia so that they can re-
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Gallagher-Thompson ceive appropriate treatment as early as possible in the disease process. In the sixth paper in the special section, Hirschman et al. report one of a very few studies to describe factors influencing advanced care decision-making by family members for persons with dementia.31 As dementia progresses, patients lose their ability to make decisions of importance to their general quality of life and, in particular, decisions concerning their health care. The burden of making healthcare decisions then typically is shifted to the primary caregiver, although family consensus about these decisions may be sought (not always successfully; see Haley et al.32). This study explored the standard used by family members to make such decisions. Thirty family members of patients with advanced dementia were asked to select one of two strategies used in making decisions and then were given an opportunity to explain their answer. Content analysis indicated that three approaches were used. Only two family members indicated that they made medical decisions based on what the patient would have wanted, which is referred to as substituted judgment; what the family member thought was in the best interest of the patient was selected by 17 of the respondents; 11 family members stated that they used a combination of the two, because they saw no difference between what the patient would have wanted and what was in the patient’s best interest. Roughly 60% of the family members recalled having discussions with the patient about healthcare preferences. Of the 13 who did not, 69% stated that if they now had the opportunity to do so, they clearly would discuss healthcare preferences, although it might be upsetting. It is noteworthy, however, that among the 17 family members who knew the patients’ preferences, many were influenced by other factors. One prominent factor was family consensus; another was presumed impact on the patient’s quality of life; a third was that the decision would not be in the patient’s best interests, and finally, the authority of healthcare professionals was also influential. Although the sample size is small, relatively speaking, findings clearly underscore the importance of understanding more about what influences families in terms of end-of-life decision-making for their demented relatives. It seems clear that in this study, at least, families wished they had had advance directives concerning desired care practices that they
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could fall back on when the time came that the demented individual was no longer capable of making his or her own decisions. Nearly two-thirds of the respondents wished they could go back in time to a point when their relative could discuss care preferences intelligently. Continued efforts to develop strategies that might encourage such discussions early in the disease process would improve caregivers’ ability to make healthcare decisions that reflect stated patient preferences. In the final paper in this series, Schulz et al. report findings from a prospective bereavement in a sample of 1,222 dementia family caregivers from the REACH national collaborative study.33 Over the past 3 decades of research on caregivers, the focus of most work has been on describing factors involved in caregiving, identifying persons in this role who are not coping well with the stress and might be at risk for serious negative outcomes, and developing intervention strategies to help them deal with the problems in a constructive way so that they can continue in the caregiving role effectively. Until recently, little attention has been paid to the bereavement caregivers undergo at the loss of the care recipient and how this might be intertwined with caregiving in accounting for subsequent postbereavement adjustment. The present authors have addressed this issue in a unique prospective study in which relevant psychosocial measures were obtained from caregivers before and after their care recipient’s death. Using the presence or absence of complicated bereavement as their main outcome measure, they estimated three multiple logistic regression models to identify preand postfactors related to this variable. Higher depression, perception of burden, positive evaluation of caregiving, and greater impairment in functioning as reflected in activities of daily living/instrumental activities of daily living and MMSE all were significantly associated with evidence of complicated bereavement and could be construed as risk factors for postloss adjustment problems. Furthermore, actually being in an intervention group designed to help them deal with the stress of caregiving before the death, in contrast to being in a minimal contact control condition, was associated with not experiencing complicated bereavement. This observation suggests that attempts to help the individual cope with the caregiving stress before death had definite protective effects during postloss
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Editorial bereavement. Perhaps this intervention, in combination with more specific bereavement counseling after the death, would be even more effective in alleviating postloss bereavement symptoms. The possible mechanism here is not clear, although one hypothesis might be that the intervention has an impact on other risk factors such as depression, which in turn improves postloss functioning. This study is a first of its kind and clearly warrants replication, although it can be difficult to obtain prospective measures. However, even without replication, these results raise the argument that interventions targeting specific risk factors are potentially warranted and should be considered for inclusion in future caregiver intervention research programs. Taken together, these seven studies represent continued advances in the field of caregiving research,
suggesting as they do numerous future studies and having specific clinical applications as well. Developing a more comprehensive understanding of what caregivers experience, how that might be influenced by cultural values and beliefs, and how certain stylistic features of the individual may influence their response to treatment interventions can only illuminate our work in geriatric psychiatry and related fields. We have only begun to understand some of the physiological mechanisms involved in caregiving stress responses as well as some of the psychological mechanisms of change. Continued collaborative research is needed to more fully articulate these processes. It will be well worth our efforts as the population of babyboomers will soon be older adults and family caregiving will become an even more urgent national priority.
References 1. Pinquart M, Sorensen S: Differences between caregivers and noncaregivers in psychological health and physical health: a metaanalysis. Psychol Aging 2003; 18:250 –267 2. Forester B, Antognini FC, Stoll A: Geriatric bipolar disorder, in Principles and Practice of Geriatric Psychiatry. Edited by Argonin ME, Maletta GJ. Philadelphia, Lippincott Williams & Wilkins, 2006: 369 –391 3. Schulz R, Martire LM: Family caregiving of persons with dementia: prevalence, health effects, and support strategies. Am J Geriatr Psychiatry 2004; 12:240 –249 4. Ory M, Hoffman RR, Yee JL, et al: Prevalence and impact of caregiving: a detailed comparison between dementia and nondementia caregivers. Gerontologist 1999; 39:177–185 5. Family Caregiving in the US: Findings From a National Survey. Final Report. Washington, D.C.: National Alliance for Caregiving, 2003 6. Pinquart M, Sorensen S: Ethnic differences in stressors, resources, and psychological outcomes of family caregiving: a meta-analysis. Gerontologist 2005; 45:90 –106 7. Vitaliano PP, Zhang J, Scanlan JM: Is caregiving hazardous to one’s physical health? A meta-analysis. Psychol Bull 2003; 129: 946 –972 8. Doka KJ Living With Grief. Alzheimer’s Disease. Washington, D.C.: Hospice Foundation of America, 2004 9. Brodaty H, Green A, Koschera A: Meta-analysis of psychosocial interventions for caregivers of people with dementia. J Am Geriatr Soc 2003; 51:657–664 10. Gallagher-Thompson D, Coon DW: Evidence-based treatments to reduce psychological distress in family caregivers of older adults. Psychol Aging, in press 11. Schulz R, Martire LM, Klinger J: Evidence-based caregiver interventions in geriatric psychiatry. Psychiatry Clin North Am 2005; 28:1007–1038 12. Sorensen S, Pinquart M, Duberstein P: How effective are interventions with caregivers? An updated meta-analysis. Gerontologist 2002; 42:356 –372
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13. Aschbacher K, von Ka¨nel R, Dimsdale J, et al: Dementia severity of the care receiver predicts procoagulant response in Alzheimer caregivers. Am J Geriatr Psychiatry 2006; 14:694–703 14. McCallum TJ, Sorocco KH, Fritsch T: Mental health and diurnal salivary cortisol patterns among African American and European American female dementia family caregivers. Am J Geriatr Psychiatry 2006; 14:684–693 15. Bauer ME, Vedhara K, Perks P, et al: Chronic stress in caregivers of dementia patients is associated with reduced lymphocyte sensitivity to glucocorticoids. J. Neuroimmunol 2000; 103: 84 –92 16. Gallagher-Thompson D, Robinson Shurgot G, Rider K, et al: Ethnicity, stress, and cortisol function in Hispanic and non-Hispanic white women: a preliminary study of family dementia caregivers and noncaregivers. Am J Geriatr Psychiatry 2006; 14: 334 –342 17. Aranda MP, Knight BG: The influence of ethnicity and culture on the caregiver stress and coping process: a sociocultural review and analysis. Gerontologist 1997; 37:342–354 18. Dilworth-Anderson P, Goodwin PY, Williams SW: Can culture help explain the physical health effects of caregiving over time among African American caregivers? J Gerontol B Psychol Sci Soc Sci 2004; 59:S138 –155 19. Haley WE, Gitlin LN, Wisniewski SR, et al: Well-being, appraisal, and coping in African-American and Caucasian dementia caregivers: findings from the REACH study. Aging Ment Health 2004; 8:316 –329 20. Gallagher-Thompson D, Rabinowitz YG, Tang PCY, et al: Recruiting Chinese Americans for dementia caregiver intervention research: suggestions for success. Am J Geriatr Psychiatry 2006; 14:676–683 21. Mental Health: Culture, Race, and Ethnicity—A Supplement to Mental Health: A Report of the Surgeon General. Rockville, MD, US Department of Health & Human Services, 2001 22. Curry L, Jackson J: The science of including older ethnic and
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Gallagher-Thompson racial group participants in health-related research. Gerontologist 2003; 43:15–17 23. Gallagher-Thompson D, Singer LS, Depp C, et al: Effective recruitment strategies of Latino and Caucasian dementia family caregivers in intervention research. Am J Geriatr Psychiatry 2004; 12: 484 –490 24. Reed PS, Foley KL, Hatch J, et al: Recruitment of older African Americans for survey research: a process evaluation of the community and church-based strategy in the Durham Elders Project. Gerontologist 2003; 43:52–61 25. Guo Z, Levy BR, Hinton WL, et al: The power of labels: recruiting dementia-affected Chinese American elders and their caregivers. J Ment Health Aging 2000; 6:103–112 26. Hinton WL, Guo Z, Hillygus J, et al: Working with culture: a qualitative analysis of barriers to the recruitment of ChineseAmerican family caregivers for dementia research. J Cross Cult Gerontol 2000; 15:119 –137 27. Rabinowitz YG, Mausbach BT, Coon DW, et al: The moderating effect of self-efficacy on intervention response in women family caregivers of older adults with dementia. Am J Geriatr Psychiatry 2006; 14:642–649 28. Coon DW, Thompson L, Steffen A, et al: Anger and depression
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management: psychoeducational skill training interventions for women caregivers of a relative with dementia. Gerontologist 2003; 43:678 –689 29. Gallagher-Thompson D, Coon DW, Solano N, et al: Change in indices of distress among Latino and Anglo female caregivers of elderly relatives with dementia: site-specific results from the REACH national collaborative study. Gerontologist 2003; 43:580 – 591 30. Maust DT, Onyike CU, Sheppard JE, et al: Predictors of caregiver unawareness and non-treatment of dementia among residents of assisted living facilities: the Maryland Assisted Living Study (MD-AL). Am J Geriatr Psychiatry 2006; 14:668–675 31. Hirschman K, Kapo JM, Karlawish JHT: Why doesn’t a family member of a person with advanced dementia use a substituted judgment when making a decision for that person? Am J Geriatr Psychiatry 2006; 14:659–667 32. Haley WE, Allen RS, Reynolds S, et al: Family issues in end-of-life decision making and end-of-life care. Am Behav Sci 2002; 46:284 – 298 33. Schulz R, Boerner K, Shear K, et al: Predictors of complicated grief among dementia caregivers: a prospective study of bereavement. Am J Geriatr Psychiatry 2006; 14:650–658
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Caregiving Issues: Covering the Spectrum From Detection to End of Life Dolores Gallagher-Thompson, Ph.D. “Only a life lived for others is a life worthwhile.”—Albert Einstein
I
n the past decade, there has been tremendous growth in the research focusing on family caregiving, particularly among those caring for a relative with Alzheimer disease (AD) or another form of dementia. Studies have primarily been descriptive, documenting ways in which caregivers differ from noncaregivers1 or ways in which caregivers of patients with AD differ from those caring for relatives with other psychiatric (e.g., schizophrenia) or medical (e.g., cancer) diseases.2 A recent review by Schulz and Martire3 echoes what prior reviews found, namely, that dementia caregivers are at greater risk for psychiatric disorders and symptoms (particularly depression and anxiety), as well as self-reported negative health effects, than demographically similar caregivers of elders with primarily physical (not cognitive) disorders. Ory and colleagues reported similar findings and also commented on the impact of relationship of the caregiver to the care recipient.4 They emphasized the need for more research on differences in the kinds of negative outcomes experienced by spouses compared with adult children, who assume very different roles in the caregiving process. Although this literature has led to many valuable insights regarding the impact of family caregiving on both mental and physical health, there are some notable limitations that have only recently begun to be addressed. First, most of the research before 2000 focused on
non-Hispanic whites, most of whom were middleaged or older women caring for parents, spouses, or1 parents-in-law. Persons of color, men caregivers, and other individuals (e.g., adult grandchildren or close friends) were not routinely recruited for studies5,6 despite evidence of their increasing assumption of caregiving roles. Second, few studies focused on the impact of caregiving on actual physical or mental health problems or biologic markers of physical or mental health status.7 Rather, most rely on self-reported mental or physical health status, which can be subject to measurement error, compared with use of more objective methods of psychiatric evaluation such as diagnostic interviews and/or results of laboratory tests or confirmed medical diagnoses.3,7 One of the few exceptions to this is the literature on the prevalence of depressive diagnoses, and depressive symptoms, in family caregivers; both have been documented to occur to a greater extent in caregivers compared with noncaregivers. Most studies report 30%–50% prevalence of depressive diagnoses and even higher rates of self-reported depressive symptoms among caregivers3 even across ethnic group comparisons.6 Third, although there is a growing body of information about advance directives and end-of-life care in the caregiving literature, there have been few systematic studies of how end-of-life decisions are actually made in this population8 and what factors might influence family members in one direction or another on this matter. Finally, relatively few theoretically based intervention studies, using a randomized clinical trial meth-
From the Department of Psychiatry & Behavioral Sciences, Stanford University School of Medicine, Stanford, California; and the Older Adult and Family Center, VA Palo Alto Health Care System, Palo Alto, California. Send correspondence and reprint requests to Dolores Gallagher-Thompson, 79 Willow Road, 182 C/MP, Menlo Park, CA 94025; e-mail: [email protected]. © 2006 American Association for Geriatric Psychiatry
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Editorial odology, have been conducted to determine in a rigorous manner what kinds of interventions are most helpful to specific subgroups of caregivers. More often, quasiexperimental studies are reported, or other methodological problems limit the confidence one can place in the results.9 –12 The seven studies in this special section address one or more of these limitations. The first two articles present original research on physiological indicators of chronic caregiving stress: Aschbacher et al.13 and McCallum et al.14 Aschbacher et al.13 demonstrated a relationship between the global clinical rating of dementia in care recipients and plasma level of the factor D-dimer in their spousal caregivers. The more elevated D-dimer is, the greater the likelihood of thrombus formation and the occurrence of other cardiovascular complications. Not only do spousal caregivers tend to have elevated levels of D-dimer when compared with noncaregivers, but also the greater the severity of dementia in the care recipient, the greater the elevated level of the plasma D-dimer. The authors also introduced an acute laboratory stress by requesting the caregivers to give a three-minute improvised speech on a topic that was not assigned in advance. The positive relationship between spousal caregiver level of D-dimer and severity of dementia in the spouse was even more prominent. Because one of the primary goals of this work was to ascertain the magnitude of the dementia severity effect on the caregivers’ D-dimer, the average predicted D-dimer value was obtained for each level of dementia along with the 95% confidence interval. A graphic representation of these values illustrates a steady increase in D-dimer across the entire range of care recipient dementia. This was apparent for the initial level of D-dimer and the change in D-dimer after the acute stress of an improvised three-minute speech. This study provides yet another objective finding for the comparatively small body of accumulating evidence in support of the argument that the sustained stress of family caregiving can, under certain circumstances, lead to disruption of physiological functioning and subsequent morbidity or even mortality. In this instance, the data suggest that as the dementia progresses and the burden of care increases, a specific substance in circulating plasma, which is a precursor to blood coagulation, becomes
636
elevated in the caregiver, thus increasing the risk of thrombus formation and negative cardiovascular events. The clinical relevance of this work is readily apparent, and like many good studies do, it raises a number of important avenues for further research. For example, at what level of dementia severity is the procoagulant factor triggered? What interventions might be helpful in counteracting D-dimer elevations, and at what point should they be implemented? Replication of these findings using larger samples that can be followed longitudinally would be extremely helpful in addressing these and other questions. The second paper in this set by McCallum et al.14 adds to the small but growing body of current information on dysregulation of cortisol as a negative physiological response to stress among family caregivers.15,16 It also adds significant new information to the literature on how cultural factors influence the responsiveness of black women to being in the role of dementia caregiver. In fact, studying both ethnicity and physiological stress responses at the same time is a unique feature of this work. In this study of 54 caregivers (30 blacks and 24 Euro-Americans) and 63 noncaregivers (48 blacks and 15 Euro-Americans), cortisol was obtained from saliva; as is typical, five samples were collected daily for two consecutive days and findings were averaged for greater reliability. Measures were also taken of depressive symptoms, perceived stress, and other more culturally determined indices, including religious coping, cultural justifications for caregiving, and stress-related growth. They found, as expected, that scores on the culturally related variables were higher in the black caregivers, indicating more ability to experience positive aspects of caregiving, despite some stress as well, compared with the Euro-American sample. At the same time, both groups of caregivers were comparable on indices of depressive symptoms and perceived stress with average scores in the moderate ranges of intensity. Contrary to expectations, they also found that flatter diurnal cortisol slopes were present in both black samples compared with the Euro-Americans, suggesting that there is not a straightforward relationship between caregiving and cortisol dysregulation. This finding is very similar to that reported in the April 2006 issue of the Journal by Gallagher-Thompson and colleagues with Hispanic white samples of caregivers
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Gallagher-Thompson and noncaregivers.16 Both research groups posited that this finding may be either the result of or related to broader health disparities such as more serious comorbid medical illnesses in the minority samples, which was not investigated directly in either study and which should be the subject of future research. McCallum et al.’s findings14 lend further theoretical support to the use of a sociocultural stress and coping model17 when studying ethnically and/or culturally diverse samples of caregivers. That model emphasizes the role of cultural factors in determining caregivers’ responses—specifically, that ethnicity and cultural influences impact stress-related beliefs; these in turn affect mental and physical health outcomes. The model recommends that direct measurement of cultural beliefs and values be done, in contrast to prior thought on this matter, which used race or ethnicity as a simple “proxy” variable to examine culture. In the McCallum et al. report, they included direct measures of cultural values and beliefs, including, for example, a scale of “stress related growth,” to extend prior findings that blacks, as well as other nonwhite groups, do report more positive aspects of caregiving compared with their white counterparts.14 This has been reported by other research groups as well18,19 and suggests that further research is needed on how both positive and negative affects and views can coexist in the same individuals and how they may each independently affect mental and physical health outcomes. In the third paper in this set, by Gallagher-Thompson et al.,20 the focus is on effective recruitment strategies to engage Chinese caregivers in intervention research. This work stemmed partially from the Surgeon General’s report,21 which highlighted the fact that mental health services were being underused by ethnic minorities—although the need for such services was clearly in evidence. The report further encouraged research to identify the basis for disparities between availability and accessibility of services to minority groups. A number of explanatory factors have been considered for this discrepancy, including the appropriateness of recruiting strategies. The relevance of this issue for black and Hispanic American caregivers has been addressed in recent papers.22–24 Before the work presented here, however, there has been very little focus on the importance of how to recruit Chinese and Chinese Americans into dementia research. Studies by Guo et
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al.25 and Hinton et al.26 provided the first empiric data on this topic that emphasized the role of Chinese cultural values (filial piety, saving “face,” and avoiding stigma associated with “mental illness”) as critical factors to consider. Against this backdrop, the third paper in this set was conceptualized. The authors compared the effectiveness of three strategies used to recruit both white and Chinese American caregivers into research programs providing services to alleviate caregiver stress. Two of these were relatively impersonal: media advertisements (e.g., flyers, newspaper articles, spot ads on TV and radio, and so on) and information presented at formal talks, community workshops, and health fairs about the relevance of the research and how to avail oneself of the services provided. The third was more consumer-oriented, involving multiple contacts with Chinese health and mental health service providers who already had established trusting relationships with Chinese elders and their families. As expected, a greater proportion of whites than Chinese Americans enrolled in research, overall. There was also a significant strategy by ethnicity interaction: success of nonprofessional strategies was extremely low for the Chinese Americans, but highest of the three strategies for the whites. In contrast, and consistent with Chinese cultural values and beliefs, the most successful category for them was the professional (50⫹%). In other words, enrollment in research was more likely to happen when the study was presented in a culturally appropriate way by trusted Chinese professionals who understood its value and could communicate that to the caregivers. Consistent with other findings on successful outreach strategies for ethnic and culturally diverse groups, these results raise suggestions about allocation of resources for recruitment into future studies. For example, funds would appear to be better spent getting out into the community and networking with “cultural brokers” for that community versus investing in costly advertisements or using passive mechanisms such as posting flyers and expecting potential subjects to initiate contact. Whites, on the other hand, appear to respond well to media-based and similar approaches. This may reflect culture-specific differences in attitudes involving health and community institutions; there is perhaps less need to develop strong feelings of trust about health institutions and health services research in the latter group.
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Editorial In the fourth paper in this series, Rabinowitz et al. performed moderator analyses to determine if caregivers’ reported self-efficacy at baseline (before participation in an intervention study for distressed women dementia caregivers) would predict differential treatment responsiveness.27 The inclusion of moderator analyses is an important advance in intervention research because it enables one to identify baseline characteristics associated with either positive or negative outcomes. Typically, intervention studies do not include such analyses, but rather focus on simple main effects of treatment. Exceptions such as the work of Coon et al.28 are notable. In that study, the focus was also on identifying moderators of change, although from a different conceptual perspective. Coon et al. determined that those with a certain characteristic “style” of handling frustration and anger responded differentially to the two forms of psychoeducational programs being studied: those with an “anger-in” style responded better to the depression management program, whereas those with an “anger-out” style responded better to the anger management program.28 This led to suggestions for both clinical management and future research, because personality style variables have not typically been included in caregiver studies. Rabinowitz and colleagues27 similarly wanted to determine if certain specific caregiver characteristics would predict positive response to specific treatments so that effective preintervention screening methods could be implemented that could guide both clinical work and future research. To determine whether baseline self-efficacy (SE) would identify caregivers most likely to respond to the interventions being evaluated, S-E in three conceptually distinct domains was measured: obtaining respite, controlling upsetting thoughts about caregiving, and responding to disruptive care-recipient behaviors. Outcome measures included depressive symptoms, anxiety, use of adaptive coping strategies, and increase in perceived social support. The sample consisted of 213 female dementia caregivers, being the same sample used at the Palo Alto, CA, site of the REACH multisite collaborative study and building on the main outcomes reported by Gallagher-Thompson et al.29 Findings indicated that low baseline SE for the first two domains moderated the relationship between intervention condition and change in depressive symptoms, anxiety, and per-
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ceived social support. Baseline SE for responding to disruptive behaviors did not moderate the relationship between intervention condition and any of the outcome measures employed. In all cases, lower SE at baseline predicted significantly greater improvement in caregivers randomly assigned to the psychoeducational treatment condition compared with the support group control condition, suggesting that a skills-based intervention program is most effective for those with low skill levels to begin with. Although this may seem intuitively obvious, this finding has not been heretofore empirically supported. In the fifth paper in the series, Maust et al. reported some findings from the large Maryland Assisted Living Study (MD-AL) in which assisted-living facilities in Maryland were randomly selected stratifying by their size.30 A team of a geriatric psychiatrist, a nurse practitioner, and a psychometric technician visited each facility and assessed targeted patients for dementia. These residents were then classified as having or not having dementia. Comparisons were made with formal caregivers’ impressions of the diagnosis. Logistic regressions were completed to identify factors that predicted awareness of dementia on the part of the staff and also whether the residents were in treatment appropriate for dementia. Two-thirds of the residents worked up had dementia. Roughly 25% of these were unrecognized as having dementia by the caregivers. Of the 64 residents in the study without dementia, 11 were falsely identified by the caregivers as demented. Being male, having a higher Mini-Mental State Examination (MMSE) score, fewer neuropsychiatric symptoms, and higher instrumental activities of daily living were all associated with unawareness of dementia. Twenty of the 133 residents with dementia were receiving no treatment. Family or caregiver unawareness, higher MMSE score, and being female were associated with not receiving treatment. Not surprisingly, caregivers are more likely to overlook the possibility of dementia in residents who present few day-to-day problems. It is also not surprising that family unawareness of dementia was associated with a failure to treat dementia. This suggests that family advocacy is important in influencing treatment decisions. As more effective treatments for dementia are developed, it will become even more important to develop economic ways of identifying residents with dementia so that they can re-
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Gallagher-Thompson ceive appropriate treatment as early as possible in the disease process. In the sixth paper in the special section, Hirschman et al. report one of a very few studies to describe factors influencing advanced care decision-making by family members for persons with dementia.31 As dementia progresses, patients lose their ability to make decisions of importance to their general quality of life and, in particular, decisions concerning their health care. The burden of making healthcare decisions then typically is shifted to the primary caregiver, although family consensus about these decisions may be sought (not always successfully; see Haley et al.32). This study explored the standard used by family members to make such decisions. Thirty family members of patients with advanced dementia were asked to select one of two strategies used in making decisions and then were given an opportunity to explain their answer. Content analysis indicated that three approaches were used. Only two family members indicated that they made medical decisions based on what the patient would have wanted, which is referred to as substituted judgment; what the family member thought was in the best interest of the patient was selected by 17 of the respondents; 11 family members stated that they used a combination of the two, because they saw no difference between what the patient would have wanted and what was in the patient’s best interest. Roughly 60% of the family members recalled having discussions with the patient about healthcare preferences. Of the 13 who did not, 69% stated that if they now had the opportunity to do so, they clearly would discuss healthcare preferences, although it might be upsetting. It is noteworthy, however, that among the 17 family members who knew the patients’ preferences, many were influenced by other factors. One prominent factor was family consensus; another was presumed impact on the patient’s quality of life; a third was that the decision would not be in the patient’s best interests, and finally, the authority of healthcare professionals was also influential. Although the sample size is small, relatively speaking, findings clearly underscore the importance of understanding more about what influences families in terms of end-of-life decision-making for their demented relatives. It seems clear that in this study, at least, families wished they had had advance directives concerning desired care practices that they
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could fall back on when the time came that the demented individual was no longer capable of making his or her own decisions. Nearly two-thirds of the respondents wished they could go back in time to a point when their relative could discuss care preferences intelligently. Continued efforts to develop strategies that might encourage such discussions early in the disease process would improve caregivers’ ability to make healthcare decisions that reflect stated patient preferences. In the final paper in this series, Schulz et al. report findings from a prospective bereavement in a sample of 1,222 dementia family caregivers from the REACH national collaborative study.33 Over the past 3 decades of research on caregivers, the focus of most work has been on describing factors involved in caregiving, identifying persons in this role who are not coping well with the stress and might be at risk for serious negative outcomes, and developing intervention strategies to help them deal with the problems in a constructive way so that they can continue in the caregiving role effectively. Until recently, little attention has been paid to the bereavement caregivers undergo at the loss of the care recipient and how this might be intertwined with caregiving in accounting for subsequent postbereavement adjustment. The present authors have addressed this issue in a unique prospective study in which relevant psychosocial measures were obtained from caregivers before and after their care recipient’s death. Using the presence or absence of complicated bereavement as their main outcome measure, they estimated three multiple logistic regression models to identify preand postfactors related to this variable. Higher depression, perception of burden, positive evaluation of caregiving, and greater impairment in functioning as reflected in activities of daily living/instrumental activities of daily living and MMSE all were significantly associated with evidence of complicated bereavement and could be construed as risk factors for postloss adjustment problems. Furthermore, actually being in an intervention group designed to help them deal with the stress of caregiving before the death, in contrast to being in a minimal contact control condition, was associated with not experiencing complicated bereavement. This observation suggests that attempts to help the individual cope with the caregiving stress before death had definite protective effects during postloss
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Editorial bereavement. Perhaps this intervention, in combination with more specific bereavement counseling after the death, would be even more effective in alleviating postloss bereavement symptoms. The possible mechanism here is not clear, although one hypothesis might be that the intervention has an impact on other risk factors such as depression, which in turn improves postloss functioning. This study is a first of its kind and clearly warrants replication, although it can be difficult to obtain prospective measures. However, even without replication, these results raise the argument that interventions targeting specific risk factors are potentially warranted and should be considered for inclusion in future caregiver intervention research programs. Taken together, these seven studies represent continued advances in the field of caregiving research,
suggesting as they do numerous future studies and having specific clinical applications as well. Developing a more comprehensive understanding of what caregivers experience, how that might be influenced by cultural values and beliefs, and how certain stylistic features of the individual may influence their response to treatment interventions can only illuminate our work in geriatric psychiatry and related fields. We have only begun to understand some of the physiological mechanisms involved in caregiving stress responses as well as some of the psychological mechanisms of change. Continued collaborative research is needed to more fully articulate these processes. It will be well worth our efforts as the population of babyboomers will soon be older adults and family caregiving will become an even more urgent national priority.
References 1. Pinquart M, Sorensen S: Differences between caregivers and noncaregivers in psychological health and physical health: a metaanalysis. Psychol Aging 2003; 18:250 –267 2. Forester B, Antognini FC, Stoll A: Geriatric bipolar disorder, in Principles and Practice of Geriatric Psychiatry. Edited by Argonin ME, Maletta GJ. Philadelphia, Lippincott Williams & Wilkins, 2006: 369 –391 3. Schulz R, Martire LM: Family caregiving of persons with dementia: prevalence, health effects, and support strategies. Am J Geriatr Psychiatry 2004; 12:240 –249 4. Ory M, Hoffman RR, Yee JL, et al: Prevalence and impact of caregiving: a detailed comparison between dementia and nondementia caregivers. Gerontologist 1999; 39:177–185 5. Family Caregiving in the US: Findings From a National Survey. Final Report. Washington, D.C.: National Alliance for Caregiving, 2003 6. Pinquart M, Sorensen S: Ethnic differences in stressors, resources, and psychological outcomes of family caregiving: a meta-analysis. Gerontologist 2005; 45:90 –106 7. Vitaliano PP, Zhang J, Scanlan JM: Is caregiving hazardous to one’s physical health? A meta-analysis. Psychol Bull 2003; 129: 946 –972 8. Doka KJ Living With Grief. Alzheimer’s Disease. Washington, D.C.: Hospice Foundation of America, 2004 9. Brodaty H, Green A, Koschera A: Meta-analysis of psychosocial interventions for caregivers of people with dementia. J Am Geriatr Soc 2003; 51:657–664 10. Gallagher-Thompson D, Coon DW: Evidence-based treatments to reduce psychological distress in family caregivers of older adults. Psychol Aging, in press 11. Schulz R, Martire LM, Klinger J: Evidence-based caregiver interventions in geriatric psychiatry. Psychiatry Clin North Am 2005; 28:1007–1038 12. Sorensen S, Pinquart M, Duberstein P: How effective are interventions with caregivers? An updated meta-analysis. Gerontologist 2002; 42:356 –372
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13. Aschbacher K, von Ka¨nel R, Dimsdale J, et al: Dementia severity of the care receiver predicts procoagulant response in Alzheimer caregivers. Am J Geriatr Psychiatry 2006; 14:694–703 14. McCallum TJ, Sorocco KH, Fritsch T: Mental health and diurnal salivary cortisol patterns among African American and European American female dementia family caregivers. Am J Geriatr Psychiatry 2006; 14:684–693 15. Bauer ME, Vedhara K, Perks P, et al: Chronic stress in caregivers of dementia patients is associated with reduced lymphocyte sensitivity to glucocorticoids. J. Neuroimmunol 2000; 103: 84 –92 16. Gallagher-Thompson D, Robinson Shurgot G, Rider K, et al: Ethnicity, stress, and cortisol function in Hispanic and non-Hispanic white women: a preliminary study of family dementia caregivers and noncaregivers. Am J Geriatr Psychiatry 2006; 14: 334 –342 17. Aranda MP, Knight BG: The influence of ethnicity and culture on the caregiver stress and coping process: a sociocultural review and analysis. Gerontologist 1997; 37:342–354 18. Dilworth-Anderson P, Goodwin PY, Williams SW: Can culture help explain the physical health effects of caregiving over time among African American caregivers? J Gerontol B Psychol Sci Soc Sci 2004; 59:S138 –155 19. Haley WE, Gitlin LN, Wisniewski SR, et al: Well-being, appraisal, and coping in African-American and Caucasian dementia caregivers: findings from the REACH study. Aging Ment Health 2004; 8:316 –329 20. Gallagher-Thompson D, Rabinowitz YG, Tang PCY, et al: Recruiting Chinese Americans for dementia caregiver intervention research: suggestions for success. Am J Geriatr Psychiatry 2006; 14:676–683 21. Mental Health: Culture, Race, and Ethnicity—A Supplement to Mental Health: A Report of the Surgeon General. Rockville, MD, US Department of Health & Human Services, 2001 22. Curry L, Jackson J: The science of including older ethnic and
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Gallagher-Thompson racial group participants in health-related research. Gerontologist 2003; 43:15–17 23. Gallagher-Thompson D, Singer LS, Depp C, et al: Effective recruitment strategies of Latino and Caucasian dementia family caregivers in intervention research. Am J Geriatr Psychiatry 2004; 12: 484 –490 24. Reed PS, Foley KL, Hatch J, et al: Recruitment of older African Americans for survey research: a process evaluation of the community and church-based strategy in the Durham Elders Project. Gerontologist 2003; 43:52–61 25. Guo Z, Levy BR, Hinton WL, et al: The power of labels: recruiting dementia-affected Chinese American elders and their caregivers. J Ment Health Aging 2000; 6:103–112 26. Hinton WL, Guo Z, Hillygus J, et al: Working with culture: a qualitative analysis of barriers to the recruitment of ChineseAmerican family caregivers for dementia research. J Cross Cult Gerontol 2000; 15:119 –137 27. Rabinowitz YG, Mausbach BT, Coon DW, et al: The moderating effect of self-efficacy on intervention response in women family caregivers of older adults with dementia. Am J Geriatr Psychiatry 2006; 14:642–649 28. Coon DW, Thompson L, Steffen A, et al: Anger and depression
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management: psychoeducational skill training interventions for women caregivers of a relative with dementia. Gerontologist 2003; 43:678 –689 29. Gallagher-Thompson D, Coon DW, Solano N, et al: Change in indices of distress among Latino and Anglo female caregivers of elderly relatives with dementia: site-specific results from the REACH national collaborative study. Gerontologist 2003; 43:580 – 591 30. Maust DT, Onyike CU, Sheppard JE, et al: Predictors of caregiver unawareness and non-treatment of dementia among residents of assisted living facilities: the Maryland Assisted Living Study (MD-AL). Am J Geriatr Psychiatry 2006; 14:668–675 31. Hirschman K, Kapo JM, Karlawish JHT: Why doesn’t a family member of a person with advanced dementia use a substituted judgment when making a decision for that person? Am J Geriatr Psychiatry 2006; 14:659–667 32. Haley WE, Allen RS, Reynolds S, et al: Family issues in end-of-life decision making and end-of-life care. Am Behav Sci 2002; 46:284 – 298 33. Schulz R, Boerner K, Shear K, et al: Predictors of complicated grief among dementia caregivers: a prospective study of bereavement. Am J Geriatr Psychiatry 2006; 14:650–658
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