Adult Caregiving: Summary of practical recent research   (to Mar 2007)

 

All in the Family: The Impact of Caring for Grandchildren on Grandparents' Health

Mary Elizabeth Hughes, Linda J. Waite, Tracey A. LaPierre and Ye Luo

The Journals of Gerontology Series B: Psychological Sciences and Social Sciences 62:S108-S119 (2007)

Objectives. The purpose of this study was to examine the effects of caring for grandchildren on health behaviors and mental and physical health among older adults. Methods. Using a sample of 12,872 grandparents aged 50 through 80 from the Health and Retirement Study, we examined the relationship between stability and change in various types of grandchild care and subsequent health, controlling for covariates and earlier health. Results. We found no evidence to suggest that caring for grandchildren has dramatic and widespread negative effects on grandparents' health and health behavior. We found limited evidence that grandmothers caring for grandchildren in skipped-generation households are more likely to experience negative changes in health behavior, depression, and self-rated health. We also found some evidence of benefits to grandmothers who babysit. Discussion. Our findings suggest that the health disadvantages found previously among grandparent caregivers arise from grandparents' prior characteristics, not as a consequence of providing care. Health declines as a consequence of grandchild care appear to be the exception rather than the rule. These findings are important given continuing reliance on grandparents for day care and increasing reliance on grandparents for custodial care. However, the findings should be tempered by the recognition that for a minority of grandparents, coresidential grandchild care may compromise health.

 

Family Conflict as a Mediator of Caregiver Strain.

Scharlach, Andrew Scharlach@berkeley.edu

Wei Li wei.li@responsiblelending.org

Dalvi, Tapashi B. tapashi@berkeley.edu

Family Relations; Dec2006, Vol. 55 Issue 5, p625-635, 11p,

 

The present study used structural equation modeling to examine the potential mediating effect of family conflict on caregiver strain in a randomly drawn household sample of 650 adults with primary care responsibility for an adult age 50 or older with a mental disability.

 

Caregiver strain was directly influenced by the conflict, disagreements, and hardships experienced by the caregiver’s family. Specifically, family conflict was found to mediate the impact of care recipient mental impairment and caregiver educational level on caregiver strain, and mediate partially the impact of caregiver income and caregiver-care recipient relationship. Findings suggest the importance of considering family-centered approaches when designing interventions to assist family caregivers.

 

 

Transition to Caregiving, Marital Disagreement, and Psychological Well-Being.

Heejeong Choi

Marks, Nadine F

Journal of Family Issues; Dec2006, Vol. 27 Issue 12, p1701-1722, 22p

 

Guided by a life course perspective, this study investigated whether the psychological consequences of transitioning into a caregiver role for a biological parent, parent-in-law, spouse, other kin, or nonkin among married adults might be moderated by marital role quality. Using longitudinal data from a national sample of 1,842 married adults aged 35 years and older, this study estimated regression models examining whether marital disagreement prior to the transition to caregiving predicted differences in change in global happiness and depressive symptoms because of a transition into caregiving.

 

Results indicated that, compared to noncaregivers, new caregivers for a biological parent

or spouse experienced both a greater decline in happiness and a greater increase in depressive symptoms when they reported a higher level of marital disagreement. These findings suggest that the psychological effects of becoming a caregiver for a biological parent or spouse among married adults are contingent on marital role quality.

 

 

Caregivers of Frail Elders: Updating a National Profile

Jennifer L. Wolff, PhD and Judith D. Kasper, PhD

The Gerontologist 46:344-356 (2006)

 

Purpose: Family caregivers comprise the backbone of long-term-care provision in the United States, yet little is known about how the composition and experience of family caregiving has changed over time. Design and Methods: Data are drawn from the 1989 and 1999 National Long-Term Care Survey and Informal Caregiver Survey to develop nationally representative profiles of disabled older adults and their primary informal caregivers at two points in time. Results: The proportion of chronically disabled community-dwelling older adults who were receiving informal assistance from family or friends declined over the period of interest, whereas the proportion receiving no human help increased. On average, recipients of informal care were older and more disabled in 1999 than in 1989. Primary caregivers were children (41.3%), spouses (38.4%), and other family or friends (20.4%); children were more likely and others less likely to serve as primary caregivers in 1999 relative to 1989. Primary caregivers provided frequent and high levels of help at both points in time. A striking increase was found (from 34.9% to 52.8%) in the proportion of primary caregivers working alone, without secondary caregiver involvement. Implications: In the context of projected demographic trends and budgetary constraints to public health insurance programs, these data underscore the importance of identifying viable strategies to monitor and support family caregivers in the coming years.

 

The Effectiveness of a Telephone Support Program for Caregivers of Frail Older Adults

Tamara L. Smith, PhD and Ronald W. Toseland, PhD

The Gerontologist 46:620-629 (2006)

 

Purpose: The purpose of this study was to evaluate the effectiveness of a telephone support group program on spouses and adult child caregivers of frail older adults. Design and Methods: The Telephone Support Group (TSG) model is a multicomponent group program offered in 12 weekly, 90-minute group sessions. It includes emotion-focused and problem-focused coping strategies, education, and support. We recruited for this study 36 spouses and 61 adult children and randomly assigned them to TSG or to usual services. We assessed the participants before and after the completion of TSG or usual services. Results: The results indicated that, for adult child caregivers, TSG was more effective than usual services in reducing burden, depression, social support, and pressing problems, and increasing knowledge and use of community services. We found no significant differences for spouse caregivers. Implications: This is the first study to compare the effectiveness of TSG for adult child and spouse caregivers of frail older adults. TSG showed itself to be an effective means of delivering support to adult child caregivers of frail older adults but not to spouses. More research is needed about how to make TSG effective for spouse caregivers.

 

Dyadic Intervention for Family Caregivers and Care Receivers in Early-Stage Dementia

Carol J. Whitlatch, PhD, Katherine Judge, PhD, Steven H. Zarit, PhD and Elia Femia, PhD

The Gerontologist 46:688-694 (2006)

 

Purpose: The Early Diagnosis Dyadic Intervention (EDDI) program provides a structured, time-limited protocol of one-on-one and dyadic counseling for family caregivers and care receivers who are in the early stages of dementia. The goals and procedures of EDDI are based on previous research suggesting that dyads would benefit from an intervention that increases the care receiver's active participation in his or her care plan, develops positive communication patterns between the caregiver and care receiver, increases knowledge and understanding about available services, and assists the dyad through the emotional turbulence of a diagnosis of Alzheimer's disease or other dementing condition. Design and Methods: EDDI was developed in response to research and clinical findings that suggested that care dyads in the early stages of dementia and dementia care are able to engage in a dialogue about future preferences for care, and that this discussion could address some of the uncertainty and worry experienced by each member of the dyad. As part of a feasibility trial, 31 dyads participated in the EDDI program. Measures were obtained on the intervention's implementation, including the number of sessions attended, caregiver and care receiver ratings of treatment acceptability and effectiveness, and counselor ratings of treatment effectiveness. Results: Participant and counselor evaluations of the EDDI protocol indicated that the intervention was acceptable and satisfactory to the caregivers, care receivers, and counselors, and that the intervention's goals and objectives were achievable. Implications: These findings indicate that individuals with early-stage dementia and their family caregivers are able to participate in and benefit from a structured intervention that focuses on care planning for future needs.

 

 

Project CARE: A Randomized Controlled Trial of a Behavioral Intervention Group for Alzheimer's Disease Caregivers

Judith G. Gonyea, PhD, Maureen K. O'Connor, PsyD and Patricia A. Boyle, PhD

The Gerontologist 46:827-832 (2006)

 

Purpose: The neuropsychiatric symptoms associated with Alzheimer's disease are a major contributor to caregiver distress and burden. Despite recent efforts to teach caregivers skills to manage neuropsychiatric symptoms and reduce burden, there continues to be limited evidence that these strategies have helped caregivers of individuals with Alzheimer's disease to effectively manage neuropsychiatric symptoms. We report here on Project CARE, a randomized controlled trial designed to test the effectiveness of a caregiver-based multicomponent behavioral intervention aimed to reduce caregiver distress related to neuropsychiatric symptoms, as well as general caregiver burden, and to decrease neuropsychiatric symptom severity among individuals with Alzheimer's disease. Design and Methods: The behavioral intervention involved five weekly sessions designed to teach caregivers specific techniques for managing patient neuropsychiatric symptoms in the home environment. Through the use of a randomized control trial, 80 caregivers were assigned to either the behavioral intervention group or a psychoeducational control group and were assessed both before and after the intervention. Results: Compared with caregivers in the control group, caregivers in the behavioral intervention group displayed significantly greater reductions in caregiver distress related to neuropsychiatric symptoms (p =.005). Global caregiver burden, however, did not decrease significantly for caregivers in either group (p >.05). Although it was not statistically significant, there was a trend toward greater reductions in care recipients' neuropsychiatric symptom severity in the intervention group (p =.10). Implications: The current findings suggest that targeted, group-based behavioral interventions are effective for reducing distress related to neuropsychiatric symptoms among caregivers of individuals with Alzheimer's disease and for reducing care recipients' neuropsychiatric symptoms.

 

 

The Relationship Between Care-Recipient Behaviors and Spousal Caregiving Stress

Berit Ingersoll-Dayton, PhD, and Michael Raschick, PhD

The Gerontologist 44:318-327 (2004)

 

Purpose: This study examines gender differences in spousal caregiver stress associated with care-recipient problem behaviors and helping behaviors. Design and Methods: Using data from the National Long-Term Care Survey, we examined bivariate

and multivariate relationships between the behaviors of care recipients and the stress experienced by their spouses. Results: Gender differences in caregiver stress emerged with respect to problem behaviors and helping behaviors of the care recipient. Helping behaviors had a moderating effect on the relationship between care-recipient problem behaviors and stress for caregiving husbands, but not for caregiving wives. Implications: As practitioners attempt to reduce spousal caregiving distress, they should assess the extent to which care recipient's problem behaviors and efforts to be helpful contribute to caregiver stress.

 

 

A Study of 10 States Since Passage of the National Family Caregiver Support Program: Policies, Perceptions, and Program Development

Lynn Friss Feinberg, MSW and Sandra L. Newman, MPH

The Gerontologist 44:760-769 (2004)

 

Purpose: This study describes the preliminary experiences of 10 states in providing support services to family or informal caregivers of elderly adults and adults with disabilities; it focuses on the newly created National Family Caregiver Support Program, state general funds, Medicaid-waiver programs, and other state-funding streams. Design and Methods: Case studies were conducted, between March and July 2002, through in-person interviews with state officials and stakeholders in Alabama, California, Florida, Hawaii, Indiana, Iowa, Maine, Pennsylvania, Texas, and Washington. Results: States were in the start-up phase of implementing the National Family Caregiver Support Program and varied greatly in program design and integration of caregiver support into their home- and community-based care system. Viewing family caregivers as a client population was a paradigm shift for many state officials. Implications: Heavy reliance is currently placed on family and informal caregivers in home- and community-based care, without adequate support services. Family support should be an explicit goal of long-term-care system reform.

 

 

Negotiating Care: Ties Between Aging Mothers and Their Caregiving Daughters

Lori A. McGraw and Alexis J. Walker

The Journals of Gerontology Series B: Psychological Sciences and Social Sciences 59:S324-S332 (2004)

 

Objectives. Using a feminist social constructionist perspective, we illuminate how aging mothers and their caregiving daughters negotiate issues of connection, autonomy, and conflict. Methods. We conducted a qualitative analysis of videotaped interactions between 31 White mother–daughter pairs. Results. We found that the mothers and daughters mostly (a) were attentive and responsive, (b) preserved mothers' autonomy, and (c) minimized open conflict and tension. Subtle behavioral cues visible on the videotapes also exposed underlying emotional tension in these relationships. These cues alerted us to important variation in relationship quality among the pairs. Three patterns of relating emerged: (a) symmetrically connected, (b) asymmetrically connected, and (c) symmetrically constrained. Discussion. Our exploratory study suggests that a balance between autonomy and connection is fundamental to the success of these mother–daughter caregiving relationships. Not only is it important for frail mothers to be responsive to their caregiving daughter's needs, but also it is important for daughters to support the autonomy and independence of their mothers. Our study also highlights the importance of attentiveness in these relationships. Even when mothers, because of illness and frailty, were less capable of attending to their daughters' lives, daughters in connected pairs interacted with their mothers in attentive ways. In constrained pairs, neither intergenerational partner was attentive.

 

 

Transitions in Spousal Caregiving

Lynda C. Burton, ScD, Bozena Zdaniuk, PhD, Richard Schulz, PhD, Sharon Jackson, PhD and Calvin Hirsch, MD

The Gerontologist 43:230-241 (2003)

 

Purpose: This study describes transitions over 5 years among community-dwelling elderly spouses into and within caregiving roles and associated health outcomes. Design and Methods: Participants in the Caregiver Health Effects Study (n = 818) were interviewed four times over 5 years with changes in their caregiving status described. Analyses of the effect on health outcomes of transitions were performed on those for whom four observations were available (n = 428). Results: Only half (49.5%) of noncaregivers at baseline remained noncaregivers at 5-year follow-up. The remainder experienced one or more transitions, including moving into the caregiving role, their own or their spouse's death, or placement of their spouse in a long-term care facility. The trajectory of health outcomes associated with caregiving was generally downward. Those who transitioned to heavy caregiving had more symptoms of depression, and poorer self-reported health and health behaviors. Implications: Transitions into and within the caregiving role should be monitored for adverse health effects on the caregiver, with interventions tailored to the individual's location in the caregiving trajectory.

 

 

The Effect of a Family Therapy and Technology-Based Intervention on Caregiver Depression

Carl Eisdorfer, PhD, MD, Sara J. Czaja, PhD, David A. Loewenstein, PhD, Mark P. Rubert, PhD, Soledad Arg�, PhD, Victoria B. Mitrani, PhD and Jos�zapocznik, PhD

The Gerontologist 43:521-531 (2003)

 

Purpose: The majority of persons with Alzheimer's disease (AD) are cared for at home by a family member such as a spouse or daughter. Caregiving places enormous demands on these caregivers, and the negative consequences associated with caregiving are well documented. This paper reports results from the Miami site of the REACH (Resources for Enhancing Alzheimer's Caregiver Health) program that examined the efficacy of a family therapy and technology-based intervention in reducing depressive symptoms (according to the Center for Epidemiological Studies Depression scale) among family caregivers of AD patients at 6 months and 18 months follow-up. Design and Methods: There were 225 White American and Cuban American caregivers that were randomized into a structural ecosystems therapy, structural ecosystems therapy + computer–telephone integrated system, or minimal support control condition. Results: Caregivers in the combined family therapy and technology intervention experienced a significant reduction in depressive symptoms at 6 months. The 18-month follow-up data indicated that the intervention was particularly beneficial for Cuban American husband and daughter caregivers. Implications: The results indicate that information technology has a promising role in alleviating distress and depression among groups of AD caregivers. The data also demonstrate that interventions have differential impacts according to ethnic group and the caregiver–patient relationship.

 

Primary Care Interventions for Dementia Caregivers: 2-Year Outcomes From the REACH Study

Robert Burns, MD, Linda O. Nichols, PhD, Jennifer Martindale-Adams, EdD, Marshall J. Graney, PhD and Allan Lummus, MA

The Gerontologist 43:547-555 (2003)

 

Purpose: This study developed and tested two 24-month primary care interventions to alleviate the psychological distress suffered by the caregivers of those with Alzheimer's disease. The interventions, using targeted educational materials, were patient behavior management only, and patient behavior management plus caregiver stress–coping management. We hypothesized that the addition of the stress–coping component would improve caregiver outcomes. Design and Methods: A randomized clinical trial of 167 caregiver–care recipient dyads was run, of whom 76 completed the study without bereavement or placement. Results: During 24 months, caregivers who received the patient behavior management component only, compared with those who also received the stress–coping component, had significantly worse outcomes for general well-being and a trend toward increased risk of depression (i.e., a score of >16 on the Center for Epidemiological Studies Depression scale). There was a studywide improvement for bother associated with care recipient behaviors (according to the Revised Memory and Behavior Problems Checklist). Implications: Our data suggest that brief primary care interventions may be effective in reducing caregiver distress and burden in the long-term management of the dementia patient. They further suggest that interventions that focus only on care recipient behavior, without addressing caregiving issues, may not be as adequate for reducing caregiver distress.

 

Anger and Depression Management: Psychoeducational Skill Training Interventions for Women Caregivers of a Relative With Dementia

David W. Coon, PhD, Larry Thompson, PhD, Ann Steffen, PhD, Kristen Sorocco, PhD and Dolores Gallagher-Thompson, PhD

The Gerontologist 43:678-689 (2003)

 

Purpose: This study examines the short-term impact of two theoretically based psychoeducational small group interventions with distressed caregivers, and it also examines the role of specific moderator and mediator variables on caregiver outcomes. Design and Methods: Female participants (N = 169) aged 50 and older who were caring for a community-dwelling relative with a dementing illness were randomly assigned to one of three treatment interventions: anger management, depression management, or a wait-list control group. These interventions took place over a 3- to 4-month period. The primary outcomes examined were anger or hostile mood, depressed mood, frequency of use of positive and negative coping strategies, and perceived caregiving self-efficacy. Results: Significant main effects in the expected direction were found for changes in most of these measures. Participants in both anger management and depression management groups had significant reductions in their levels of anger or hostility and depression from Time 1 to Time 2 in comparison to participants in the wait-list control group. Use of positive cognitive coping strategies increased in the anger management group only. Self-efficacy significantly increased for participants in both intervention groups, and it was also demonstrated to function as a mediator of intervention effects. Pretreatment levels of depressive symptoms and anger expression style (Anger Expression-Out) moderated the relative effects of the two interventions on mood and coping. Implications: These data are consistent with a growing body of evidence supporting the effectiveness of skills training, in small groups, to improve both the affective states and the type of coping strategies used by caregivers. In addition, this study underscores the need to evaluate key pretreatment variables in order to determine which form of treatment may be more compatible with caregiver characteristics and thus more likely to be beneficial to individuals.

 

 

The Savvy Caregiver Program: Developing and Testing a Transportable Dementia Family Caregiver Training Program

Kenneth W. Hepburn, PhD, Marsha Lewis, PhD, RN, Carey Wexler Sherman, MA and Jane Tornatore, PhD

The Gerontologist 43:908-915 (2003)

 

Purpose: This article reports on the development and field testing of the Savvy Caregiver Program, the transformation of a successful, academic-based caregiver psychoeducational program into a self-contained program that can be adopted in other locations. Design and Methods: Program development began with a prototype of a 12-hr course with the aims of introducing family caregivers to the caregiving role, providing them with the knowledge, skills, and attitudes needed to carry out that role, and alerting them to self-care issues. Results from initial field trials dictated a substantial revision of the workshop materials. The next version was field tested in multiple sites in southern rural Minnesota, Colorado, and Alaska. In this expanded testing, participants evaluated the program, and cross-group comparisons were conducted by use of well-established caregiver well-being scales. Results: Virtually all respondents reported increased skill, knowledge, and confidence, and all would recommend the program to others. A preintervention versus postintervention analysis indicates that caregivers' reaction to the overall behavior of the persons for whom they provide care (i.e., "total reaction"), their self-reported burden, and their beliefs about caregiving (emotional enmeshment) changed significantly in directions indicating better caregiver well-being. Implications: Results suggest that it is feasible to translate a research-based caregiver intervention into a packaged program that can be adopted in other settings without the direct involvement of the program initiators.

 

 

How Effective Are Interventions With Caregivers? An Updated Meta-Analysis

Silvia S�sen, PhD, Martin Pinquart, Dr habil and Paul Duberstein, PhD

The Gerontologist 42:356-372 (2002)

 

Purpose: The purpose of this study was to determine the effectiveness of interventions for family caregivers of older adults. Design and Methods: Meta-analysis was used to synthesize the effects of 78 caregiver intervention studies for six outcome variables and six types of interventions. Results: The combined interventions produced a significant improvement of 0.14 to 0.41 standard deviation units, on average, for caregiver burden, depression, subjective well-being, perceived caregiver satisfaction, ability/knowledge, and care receiver symptoms. Intervention effects were larger for increasing caregivers' ability/knowledge than for caregiver burden and depression. Psychoeducational and psychotherapeutic interventions showed the most consistent short-term effects on all outcome measures. Intervention effects for dementia caregivers were smaller than those for other groups. The number of sessions, the setting, care receiver age, caregiver age, gender, type of caregiver–care receiver relationship (spouse vs adult child), initial burden, and study characteristics moderated the observed effects. Implications: Caregiver interventions are effective, but some interventions have primarily domain-specific effects rather than global effects. The differences between intervention types and moderators suggest ways of optimizing interventions.