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Informal Caregiving for Dependent Elders:
The Association with Elder Abuse, Neglect, and the Well-Being of Older Individuals
2000-2005
As individuals live longer, and seniors comprise an increasing percentage of our population, the role of the informal caregiver continues to grow in significance. Informal caregiving, or care provided in the community by family, friends and acquaintances to dependent elders, dwarfs the amount of care provided in long-term care institutions such as nursing homes and assisted living facilities (Arnos, Levine, & Memmott, 1999).
In early studies of elder abuse and neglect, caregiver stress was considered a major cause of mistreatment. More recent research suggests that while this may be a factor in some cases, a number of abuser characteristics and behaviors (such as substance abuse, mental health impairment, and dependency upon elders) may have a stronger causal relationship than caregiver stress. (Pillemer & Finkelhor, 1989; Greenberg, McKibben, & Raymond, 1990; Korbin, Anetzberger et al., 1991.) In addition, issues of power and control, prevalent in domestic violence, may also be operant.
Nonetheless, caregiver stress remains a significant concern. Caregivers are quite often older individuals, facing the personal challenges of aging while addressing the needs of their care recipients. While caregiver stress may not directly lead to intentional or unintentional abuse and neglect of others, it may lead to a decline in the physical, emotional and financial well-being of the care provider. Furthermore, caregivers themselves are at risk for victimization by the elders for whom them they provide care.
The literature on the value and risks of informal caregiving is vast, and the range of topics cannot be completely nor thoroughly catagorized. Therefore, the following articles have been selected to underscore various aspects of informal caregiving and their impact upon the well-being of carers and care recipients alike. The bibliography is intended to assist health care and social service professionals, public policy developers, researchers and others in the aging services field to understand the value and complexities of the role fulfilled by these individuals.
Most of these reference materials can be obtained through local university and community libraries or interlibrary loan services. Some must be ordered directly through the publisher or production company. When available, contact and pricing information is included with the abstract. Increasingly, many resources are available online, and the web addresses are also included.* If you have difficulty obtaining any of these materials, please contact the CANE office for assistance by emailing cane-ud@udel.edu or telephoning (302) 831-3525.
Note: This is a selected annotated bibliography, which does not include all published references related to this topic. The included references have been selected to provide readers with a current and comprehensive collection of books and articles representing a variety of perspectives on the subject. International studies have also been included; country of origin is indicated at the end of the abstract. For additional references on caregiving, including materials published prior to 2000, please see the CANE Annotated Bibliography "Caregiving," or visit the CANE online database at http://cane.udel.edu/ . To search the CANE Bibliography Series, go to NCEA website.
*Web addresses may change without notice. If an address provided is no longer accurate, we recommend using a generic search engine, such as Google, to find a current link. If you cannot locate the online publication, contact the CANE offices for assistance at cane-ud@udel.edu or 302-831-3525.
The National Center on Elder Abuse (NCEA) serves as a national resource for elder rights advocates, law enforcement and legal professionals, public policy leaders, researchers, and citizens. It is the mission of NCEA to promote understanding, knowledge sharing, and action on elder abuse, neglect, and exploitation.
The NCEA is administered under the auspices of the National Association of State Units on Aging.
NCEA Partners
National Association of State Units on Aging (NASUA), Lead Partner
American Bar Association (ABA) Commission on Law and Aging
Clearinghouse on Abuse and Neglect of the Elderly (CANE) at the University of Delaware
National Adult Protective Services Association (NAPSA)
National Committee for the Prevention of Elder Abuse (NCPEA)
This publication was made possible through the support provided by the National Center on Elder Abuse. Major funding for the National Center on Elder Abuse comes from the U.S. Administration on Aging, Department of Health and Human Services. Grant No. 90-AM-2792.
Opinions or points of view expressed do not necessarily reflect the official position or policies of the U.S. Administration on Aging.
2005
1. P5843-8
Beach, S. et al.
Risk Factors for Potentially Harmful Informal Caregiver Behavior
Journal of the American Geriatrics Society/JAGS; Vol. 53 (2), 255-261; February 2005.
Journal article (research)
This research was designed to examine risk factors for potentially harmful behavior on the part of informal caregivers in the community. The primary focus was on the relationship between the caregiver's physical and mental status and lower quality care, which may be a precursor to elder abuse and/or neglect. The sample consisted of 265 caregiver-care recipient dyads participating in the Family Relationship in Later Life Project. Participants were recruited through various community, medical and social services networks and through media initiatives. Each member of the dyad was interviewed separately, typically in the care recipient's home. Participants were asked to self-rate their physical health status. Researchers assessed the cognitive functioning of both caregivers and care recipients, measured caregiver depression, and interviewed participants regarding the level of care provided. Respondents were also asked about indicators of psychological abuse (such as screaming and yelling, threats, verbal abuse) and physical mistreatment (including withholding food, hitting, shaking, and rough handling). Yelling and screaming were the most prevalent potentially harmful behaviors reported (by 22.2 per cent of the participants) and physical indicators were reported by one percent. Care recipients with greater ADL/IADL needs were more likely to report potentially harmful behaviors. Of note, care recipients of caregiving spouses were three to four times more likely to report such behaviors. Other significant risk factors include higher levels of care needs, greater degree of caregiver cognitive impairment, greater degree of caregiver physical symptoms, and greater risk of clinical depression for caregivers. Practitioners are urged to provide informal caregivers with education and support (through referrals for diverse, higher intensity, and earlier interventions such as counseling, support groups, skills training, case management, respite care, etc.)
2. R6087-10
Glajchen, M. et al.
Development of a Brief Assessment Scale for Caregivers of the Medically Ill
Journal of Pain Symptom Management; Vol. 29 (3), 245-254; March 2005.
Journal article (research)
This article reports upon the development of an assessment tool designed to measure caregiver burden and its impact upon caregiver well-being. Based upon the results of a literature review and content analysis of focus group interviews with formal and informal caregivers, researchers compiled a list of 35 negative items and 8 positive items related to aspects of caregiving. This item pool was administered to a sample of 102 informal caregivers, along with a validation battery of questionnaires that measured perceived burden, caregiver physical and mental health, satisfaction with patient's medical care, and various aspects of quality of life. Through factor analysis, the item pool was reduced to the 14-item Brief Assessment Scale for Caregivers (BASC) which includes a subscale for measuring negative personal impact (NPI). Results confirm the construct validity of this instrument and the NPI subscale.
3. R6088-4
Livingston, G. et al.
The Caregivers for Alzheimer's Disease Problems Scale (CAPS): Development of a New Scale Within the Laser-AD Study
Age and Ageing; Vol. 34 (3), 287-290; March 2005.
Journal article (research)
The Caregivers for Alzheimer's Disease Problems Scale (CAPS), was developed by the authors to identify caregivers at high risk for anxiety and depression. The CAPS (which is comprised of recognized risk factors for caregiver psychological morbidity) screens characteristics of the caregiver, care recipient and their relationship. This study was designed to evaluate the sensitivity and specificity of the instrument. One-hundred fifty-three family caregivers from the London and the South-East Region of England Alzheimer's Disease study (LASER-AD) were interviewed and screened for anxiety and depression using the Hospital Anxiety and Depression Scale, and each caregiver-care recipient dyad was administered the CAPS. Results indicate that the five-item instrument is effective at detecting caregivers at high risk for these mental health problems, and the researchers recommend the use of the tool for routine assessment. (U.K.)
4. R6086-11
McConaghy, R. & Caltabiano, M.
Caring for a Person with Dementia: Exploring Relationships Between Perceived Burden, Depression, Coping and Well-Being
Nursing & Health Sciences; Vol. 7 (2), 81-91; 2005.
Journal article (research)
This study was designed to assess the relationship between such variables as gender, length of time caregiving, coping style, depression, and perception of caregiver burden with the physical and psychological well-being of caregivers of individuals with dementia. Forty-two caregivers known to home care service agencies in Queensland, Australia, participated in the survey. Participants completed the Satisfaction with Life Scale, the Center for Epidemiologic Studies Depression Scale, The COPE Short Form (SF) - 12, and the Zarit Caregiver Burden Scale. Among the findings, high levels of caregiver burden were associated with poorer psychological health and lower levels of satisfaction with life. Caregivers who practiced practical forms of coping (such as taking a "one step at a time" approach) experienced less burden, but there was no association between coping style and physical well-being. There were no significant gender differences noted, and no significant correlation was found between length of time caregiving and caregiver physical health status. (Australia)
5. R6031-9
Shibusawa, T., Kodaka, M., Iwano, S. & Kaizu, K.
Interventions for Elder Abuse and Neglect with Frail Elders in Japan
Brief Treatment and Crisis Intervention; Vol. 5 (2), 203-211; 2005.
Journal article (scholarship)
With the increase in formal home health care services, Japanese health and social services professionals are becoming more aware of elder mistreatment. Currently, there is no formal notification system for reporting elder abuse and neglect, and there are no investigatory agencies (such as Adult Protective Services) in Japan. This article describes the crisis intervention strategies implemented by social workers at Home Care Support Centers in response to cases of elder abuse and neglect encountered in family caregiving situations. A summary of Japanese research is provided, which has been based mainly on surveys of formal service providers, and suggests that most elder mistreatment occurs within a caregiving context, though not most commonly the result of caregiver burden or stress. Most perpetrators are adult children providing care, including a high percentage of daughters-in-law. The three case illustrations presented demonstrate a spectrum of abuse, ranging from unintentional mistreatment to neglect and physical abuse, and also highlight cultural issues that must be considered when attempting to intervene. Interventions also vary according to the type of abuse and the family and client's willingness to accept services. Ongoing monitoring, the provision of support services (such as formal in-home health care) and the separation of victim and perpetrator through institutionalization are the interventions implemented in these case studies. (Japan)
2004
6. P5913-26
Bell, B., Oyebode, J. & Oliver, C.
The Physical Abuse of Older Adults: The Impact of the Carer's Gender, Level of Abuse Indicators, and Training on Decision Making
Journal of Elder Abuse & Neglect; Vol. 16 (3), 19-44; 2004.
Journal article (research)
This study was designed to examine the impact of occupation, training, caregiver's gender, and level of abuse indicators, on social workers' and home healthcare assistants' decisions to take action regarding suspected elder abuse. Data was drawn from 302 questionnaires completed by female social workers, care managers, and home care assistants working with older adults in two local social services departments. Participants answered questions regarding their response to one of four vignettes of suspected elder abuse by informal caregivers. The vignettes varied in the degree of abuse indicated, and the gender of the caregiver of the dementia client. Participants were also questioned regarding their level of direct experience in addressing elder abuse and their level of training in dealing with elder mistreatment. Seventy percent of the social workers had direct experience with elder abuse cases, compared to only 30 percent of the home care assistants. Social workers also reported a higher level of training in addressing cases of elder abuse. Results suggest that both occupational groups were more likely to suggest formal action (including referral to adult protective services) if the caregiver was male, and both groups were more likely to decide upon formal action in scenarios where higher levels of indicators of physical abuse were presented. While social workers were more likely to suggest further information gathering if the caregiver was male, home care assistants were more likely to suggest further assessment if the caregiver was female. Higher levels of training were associated with a greater likelihood to recommend both further assessment and formal action.
7. P5944-16
Goodman, H.
Elderly Parents of Adults with Severe Mental Illness: Group Work Interventions
Journal of Gerontological Social Work; Vol. 44 (1), 173-188; 2004.
Journal article (scholarship)
As parent caregivers of mentally ill adult children age, they face not only caregiving challenges but challenges related to their own aging, and an increased need for support. This article explores various forms of group work intervention, including support groups, psychoeducation, and multifamily groups. The article concludes with an examination of a student intern's perceptions of working with eight elderly female caregivers in the mental health agency's "Mother's Group." Themes that emerged throughout the sessions (such as parent blaming and stigmatization) as well as supportive elements of the group process (empathy, normalization of feelings) are discussed.
8. P5952-22
Kietzman, K., Scharlach, A. & Dal Santo, T.
Local Needs Assessment and Planning Efforts for Family Caregivers: Findings and Recommendations
Journal of Gerontological Social Work; Vol. 42 (3/4), 39-60; 2004.
Journal article (research)
The reauthorized Older Americans Act (OAA, 2000) requires state and local Area Agencies on Aging (AAAs) to identify and meet the needs of family caregivers. This study examines the needs assessment techniques of California AAAs' Title III-E Area Plans and their responses to a follow-up survey. Among the findings were that the most direct methods for defining the caregiver population appeared to be used very infrequently; few AAAs conducted population surveys and caregiver-specific focus groups. Agency representatives reported much greater success in identifying the needs of White/non-Hispanic caregivers than of other ethnic and racial groups. In addition to difficulties in defining the caregiver population, barriers to determining caregiver needs also included difficulty in determining current service usage, in prioritizing needs, and in translating this information into viable service plans. As a result of this project, researchers recognized the following tasks as essential to completing the needs assessment process: describing the current caregiver population; determining the needs of the population; inventorying current caregiver resources; prioritizing identified needs; and devising a service delivery plan that reduces barriers to access, supplements current resources and creates additional supports.
9. P5826-5
Kumamoto, K. & Arai, Y.
Validation of 'Personal Strain' and 'Role Strain': Subscales of the Short Version of the Japanese Version of the Zarit Burden Interview (J-ZBI_8)
Psychiatry and Clinical Neurosciences; Vol. 58 (6), 606-610; 2004.
Journal article (research)
The Zarit Burden Interview is the assessment tool most widely used in North America and Europe to assess caregiver burden experienced by family members caring for impaired elders. This research was designed to confirm the construct validity of two subscales (personal strain and role strain) of the eight-item Japanese version of the Zarit Burden Interview (J-ZBI_8). Personal strain is described as the personally stressful component of the caregiving experience, while role strain is described as the stress related to role conflict or overload. The study sample consisted of 51 community-dwelling dyads of impaired elders (registered with a nursing clinic in Kyoto City, Japan) and their primary caregivers. Caregivers provided information regarding the extent and duration of their caregiving experience, the nature of the impaired elders' disabilities, and also completed the J-ZBI_8. Elders' ability to perform activities of daily living (ADLs) was assessed using the Barthel Index (BI); cognitive impairment was assessed using the Short-Memory Questionnaire (SMQ); and behavioral disturbances were assessed using the Troublesome Behavior Scale (TBS). Findings confirm the validity of both subscales. Behavioral disturbances were associated with personal strain, while ADL deficits were associated with role strain. (Japan)
10. P5569-7
Langa, K. et al.
Extent and Cost of Informal Caregiving for Older Americans with Symptoms of Depression
American Journal of Psychiatry; Vol. 161 (5), 857-863; May 2004.
Journal article (research)
The purpose of this study was to develop a national estimate of the additional time and costs associated with informal caregiving for older, community-dwelling Americans demonstrating symptoms of depression. Based on data from the 1993 Asset and Health Dynamics Among the Oldest Old Study (n=6,649), 44 per cent of the participants indicated that they experienced one to three depressive symptoms within the previous week, and 18 per cent indicated they had experience four to eight symptoms. After adjusting for differences in health profile, sociodemographics and caregiver networks, it was estimated that respondents with no depressive symptoms received an additional 2.9 hours of assistance weekly, while those with moderate symptoms received 4.3 hours per week, and those with more frequent symptoms required 6 hours weekly. This results in an estimated additional $9.1 billion cost for informal caregiving in the U.S. annually. The study appears to support the assumptions that depressive symptoms are extremely common, associated with higher levels of disability and an increased need for informal caregiving. Women were more likely to report depressive symptoms, and appear at greater risk of having unmet care needs, in part due to financial conditions and to the increased likelihood of living alone.
11. P5953-22
Smith, T., Toseland, R., Rizzo, V. & Zinoman, M.
Telephone Caregiver Support Groups
Journal of Gerontological Social Work; Vol. 44 (1/2), 152-172; 2004.
Journal article (scholarship)
This article presents a summary of the implementation of the Telephone Support Group Model (TSG), a 12-week group work intervention adapted for use with isolated caregivers. After summarizing the literature on telephone support group intervention in social work, the authors describe the structure of this model, which consists of one-hour and fifteen minute sessions designed to foster support while promoting emotion-focused and problem-solving coping skills. The first half of each session was dedicated to "check-in" with members regarding their status and progress in skill practicing, and concluded with the introduction of an emotion-focused coping strategy. Throughout the second half of the session, problem-solving techniques were introduced and applied to the real life situations that individual group members shared. Case examples illustrating the therapeutic benefits of the process are provided.
12. P5492-22
U.S. Senate Special Committee on Aging
U.S. Senate Special Committee on Aging Hearing on "Families Helping Families: Tax Relief Strategies for Eldercare"
Washington, D.C.; February 10, 2004.
Senate Hearing
At this hearing, testimony was presented by Senator Craig (Chairman, U.S. Senate Special Committee on Aging), Trudy Elliot (caregiver), Sandra Markwood (CEO of the National Association of Area Agencies on Aging), Gail Gibson Hunt (President and CEO, National Alliance for Caregiving or NAC), and Flora "Grandma" Green (National Spokesman for The Seniors Coalition). As quoted from Senator Craig's opening remarks: "This hearing will highlight the stress and financial challenges faced by family caregivers of aging and vulnerable relatives; and shine a light on tax relief strategies for relieving the financial burdens freely undertaken by many adult children. (Note: Testimony from this hearing may be accessed online at: http://aging.senate.gov/hearing_detail.cfm?id=271368& .)
13. P5498-4
Vitaliano, P., Young, H. & Zhang, J.
Is Caregiving a Risk Factor for Illness?
Current Directions in Psychological Science; Vol. 13 (1), 13-16; 2004.
Journal article (literature review)
In 1997, it was estimated that informal family caregivers provided $196 billion dollars worth of long-term care for patients with dementia; therefore, the health of caregivers is a vital concern of not only these individuals and their families but to society as a whole. This article considers the current research on the impact of caregiving upon caregiver's health, including the effects of moderating and mediating factors. The complex interactions of distress, health habits, physiological changes and health risks occurring in a natural living environment contribute to the difficult nature of assessing caregiver health outcomes.
14. P5769-9
Yan, E. & Tang, C.
Elder Abuse by Caregivers: A Study of Prevalence and Risk Factors in Hong Kong Chinese Families
Journal of Family Violence; Vol. 19 (5), 269-277; October 2004.
Journal article (research)
This research was designed to study prevalence rates and associated risk factors (age, gender, living arrangements, visual and memory abilities, chronic illness and dependence upon caregivers) of elder abuse among Hong Kong Chinese (individuals aged 60 and over). Participants were referred from five community centers for elders, with the final sample consisting of 90 males and 186 females, ranging in age from 60 to 91. Ninety-one percent of the participants were living with family members at the time of the study. Researchers administered oral questionnaires regarding their experiences of verbal and physical abuse and violation of personal rights occurring within the previous 12 months. Of the findings, 27.5 percent of the elders experienced some form of abuse. Verbal abuse was the most prevalent mistreatment experienced (by 26.8 percent of the participants); violation of personal rights was experienced by 5.1 percent; and physical abuse was experienced by 2.5 percent. Abusers were predominantly adult children (88 per cent). Of those victimized, over one-fourth were victimized by multiple abusers. Strongest predictors of overall abuse and violation of personal rights were poor visual ability, dependence on caregivers, caregivers' nondependence on victims, and memory impairment. Physical abuse was also predicted by caregivers' nondependence on elders and elders dependence on caregivers. Advanced age was the only significant predictor of violation of personal rights. (Hong Kong)
2003
15. P5469-11
Amirkhanyan, A. & Wolf, D.
Caregiver Stress and Noncaregiver Stress: Exploring the Pathways of Psychiatric Morbidity
Gerontologist; Vol. 43 (6), 817-827; 2003.
Journal article (research)
According to the literature and theoretical review of caregiver stress presented in this article, family caregiving research assumes that the negative effects of caregiving are directly related to the act of caregiving with little attention given to the impact of the decline, and often pending death, of the family member receiving care. Drawing upon data from 8,345 participants in the Health and Retirement Study (HRS), the authors used a shortened version of the Center for Epidemiological Studies Depression Scale (CES-D) to measure depressive symptoms of caregivers and noncaregivers of family members. Among the results, there appears no association between caregiving activity and depressive symptoms. The impact of parental need appears greater upon the non-caregiving siblings than upon the caregivers. One possibility is that caregiver rewards are not mediating factors in noncaregiver stress.
16. P5267-9
Beeson, R.
Loneliness and Depression in Spousal Caregivers of Those with Alzheimer's Disease versus Non-Caregiving Spouses
Archives of Psychiatric Nursing; Vol. XVII (3), 135-143; June 2003.
Journal article (research)
Pearlin's model of caregiver stress provides the framework for the study, which analyzes the factor of loneliness in the development of depression among spousal caregivers of Alzheimer's dementia patients.. The concept of relational deprivation, which develops when the caregiver feels the loss of a significant relationship, is considered, along with the caregiver's loss of self. The sample, drawn from a Midwest Alzheimer's Disease (AD) Research Center, was comprised of 49 community-dwelling caregivers and 52 non-caregivers. Questionnaires were mailed and self-administered. Among the findings, the AD caregiver spouses reported significantly higher levels of loneliness and depression than the non-caregiver spouses, and wife-caregivers reported higher levels of loss of self. Loneliness was the only factor found to be predictive of depression. The study emphasizes the importance of considering the subjective experience in addressing the mental health needs of the caregiver.
17. P5125-10
Bergeron, L. & Gray, B.
Ethical Dilemmas of Reporting Suspected Elder Abuse
Social Work; Vol. 48 (1), 96-105; January 2003.
Journal article (scholarship)
In this article, the role of caregiver support group facilitator is considered in light of the need to report suspected elder abuse or neglect. Case studies are used to illustrate various ethical dilemmas that may arise as social workers and counselors facilitate group sessions. Balancing the right to confidentiality with the benefit of the care recipient, as well as that of the group, is discussed. Questions raised regarding caregiver abuse by the care recipient add to the complexity. The authors advise the facilitators to become familiar with both the reporting laws for the area and the elder abuse literature. In addition, participants should be made aware, in advance, of exceptions to confidentiality. Samples of confidentiality statements are provided.
18. P5314-8
Bradley, P.
Family Caregiver Assessment Essential for Effective Home Health Care
Journal of Gerontological Nursing; p29-p36 February 2003.
Journal article (research)
Observing that home health care nurses increasingly rely upon family caregivers, this article focuses upon the need for health assessments for those individuals. In this study, home care nurses conducted assessments of 51 older family caregivers. Most were the female spouses of the client, with an average age of 75. Approximately half of the sample reported poor or fair health, and a third indicated that their health had declined during the past six months. The many unmet health needs identified included blood pressure monitoring, PAP smears, and mammograms for the female caregivers, and prostate screenings for the male caregivers. Three-quarters of the sample required referrals to other health care professionals and health care education, and 23.5 % required home health care services themselves. As the population ages, ongoing assessments of family caregivers appear essential for safe patient care.
19. P5432-12
Coon, D. et al.
Anger and Depression Management: Psychoeducational Skill Training Interventions for Women Caregivers of a Relative with Dementia
The Gerontologist; Vol. 43 (5), 678-689; 2003.
Journal article (research)
The purpose of this study is to consider the effectiveness of two psychoeducational skill training interventions for caregivers of relatives experiencing dementia. A sample of 169 female caregivers, aged 50 and over, was randomly assigned to either an anger management group, a depression management group, or the waiting list control group. Participants were assessed (for depressive symptoms and anger/hostility) three times: at intake, four months later (post intervention), and again three months later. Both the anger management and depression management interventions consisted of small group, workshop type sessions, which included lecture, skill practice, discussion and home work. Results indicate that the skill training was effective; participants with higher levels of anger appeared to benefit the most from the anger management intervention and those experiencing higher levels of depressive symptoms appeared to benefit the most from the depression management intervention, while the participants of both groups experienced reductions in anger and depression when compared to the control group. The study also focuses on the role of specific moderator variables (present at baseline) and mediator variables (those that are impacted by the intervention and, in turn, effect outcome variables). Self-efficacy appears to be a mediator that increased for participants of both psychoeducational groups. In order to maximize the skill training, pre-treatment assessments are important in prescribing appropriate interventions.
20. P5433-1
Hill, J.
The Hidden Patient
The Lancet; Vol. 362, p1682; November 15 2003.
Journal article (commentary)
Centered upon the experience of a physician whose patient's wife unexpectedly committed suicide, this brief commentary describes caregivers of chronically ill patients as the "hidden patients," also in need of the practitioner's consideration.
21. P5228-20
Ho, B., Friedland, J., Rappolt, S. & Noh, S.
Caregiving for Relatives with Alzheimer's Disease: Feelings of Chinese-Canadian Women
Journal of Aging Studies; Vol. 17 (3), 301-321; 2003.
Journal article (research)
Noting that both the Chinese population and the elderly segment of society in North America are growing, this article explores the impact of culture, caregiver stress and social support upon Chinese-Canadian women caring for relatives with Alzheimer's disease. Twelve women who had emigrated from China were interviewed regarding their experiences as caregivers, within the framework of the model of caregiver stress outlined by Pearlin, Mullan, Semple and Skaff. Secondary stressors, such as role strain and intra-psychic strain, were the main focus of the five open ended questions. Inductive qualitative analysis revealed multiple common themes such as filial obligation, anticipation of the role, differences between Chinese and western attitudes towards caregiving, intergenerational and other family conflicts, work role conflicts, loss of self and "role captivity." One poignant sentiment held by many of these caregivers was that their own children would be unlikely to follow in their footsteps and likewise provide care for themselves. Mediating factors that were identified included positive attitudes and formal and informal supports that were culturally congruent with their values and circumstances. Despite the belief in filial obligation, most of these caregivers intended to institutionalize the care recipient when they could no longer provide adequately for their needs. The authors postulate that the acceptance of this outcome is likely due to the perception that institutionalization is an extension of already utilized formal supports.
22. P5472-9
Montoro-Rodriguez, J., Kosloski, K. & Montgomery, R.
Evaluating a Practice-Oriented Service Model to Increase the Use of Respite Services Among Minorities and Rural Caregivers
The Gerontologist; Vol. 43 (6), 916-924; 2003.
Journal article (research)
In this study, a practice-oriented model (focusing on service characteristics) of respite service use was compared to the more commonly used behavioral model (focusing on user characteristics). Under the practice-oriented model, the three primary aspects of respite services considered were the visibility of the service, the accessibility of the service, and the users' intent to utilize the service. Both models were applied to interview data gathered from 1,158 caregiver participants of the Alzheimer's Disease Demonstration Grant to States project. Ethnic and cultural considerations were also examined. The results indicate that the practice-oriented model more fully explains the use of respite services by Whites and Hispanics, although the behavioral model continues to be more helpful in analysis of African American usage. A significant implication is that the use of the practice-oriented model allows program developers to alter features of services (such as affordability and availability) to encourage greater usage, whereas most factors analyzed by the behavioral model (such as gender, relationships, etc.) cannot be changed.
23. P5951-18
Parrish, M. & Adams, S.
Caregiver Comorbidity and the Ability to Manage Stress
Journal of Gerontological Social Work; Vol. 42 (1), 41-58; 2003.
Journal article (research)
As caregivers age they are increasingly likely to have at least one chronic illness. This article considers the impact of physical health, or comorbidity, on caregiver well-being and the ability to manage caregiver stress. The sample consisted of 3,112 informal caregivers, involved with the California's Caregiver Resource Center (CRC), and participants in the Uniform Caregiver Assessment (2000). Caregiver physical health, psychological health, caregiver and care recipient socio-demographics, care recipient functional status (including behavioral problems), time spent providing care, and caregiver social supports were selected as predictors of the ability to manage caregiver stress. Participants rated their ability to manage stress ("very much/somewhat" or "not at all"). Most caregivers were female, with an average age of 60 (40.5 percent aged 65 and over), and three-quarters were also employed. Twenty-eight percent reported an annual household income of less than $40,000. Thirty percent had been caregivers for three to five years. Among the care recipients, 47 percent were male and 53 percent were female; mean age was 75; and 72 percent were diagnosed with a dementia. Forty-one percent of the caregivers reported they experienced at least one chronic illness and 57 percent demonstrated evidence of clinical depression on testing measures. Eighty-one percent of the care recipients were reported to have five or more functional problems; 86 percent had three or more memory difficulties; 28 percent were reported as having three or more behavioral problems (including engaging in behaviors potentially dangerous to self or others). Nearly one-third of the caregivers reported no formal or informal social supports. Participants reported spending an average of 80 hours a week engaged in care provision. While comorbidity was not a significant predictor of ability to manage stress, symptoms of clinical depression, number of care recipient's disruptive behaviors, and number of social supports were predictors. The article provides two case studies that illustrate how social workers can use the Uniform Assessment Tool to customize interventions for caregivers.
24. P5177-18
Ward-Griffin, C. & Marshall, V.
Reconceptualizing the Relationship Between "Public" and "Private" Eldercare
Journal of Aging Studies; Vol. 17 (2), 189-208; 2003.
Journal article (research)
After providing a historical overview of eldercare in Canada during recent centuries, this article addresses the increasing interface between "formal" or professional caregivers and "informal" caregivers. Four conventional models of informal and formal care linkages are presented, with limited empirical evidence of their validity. The compensatory model indicates that formal care can be substituted for informal care as a last resort. The substitution model proposes that the amount of informal care decreases when formal care is introduced. The task specificity model postulates that the nature of the task determines whether the care is formal of informal. The complementary model proposes that formal care is supplementary when the informal caregiving resources are depleted, and substituted when the informal caregiver requires respite. A new model of care grounded in socialist-feminist theory is presented, based upon the findings of a Canadian study of informal and formal caregivers. Twenty-three dyads of formal (experienced community nurses) and informal caregivers (most aged 60 and over) participated in in-depth interviews regarding the nature of the caregiving experience and their relationships with each other. Data analysis revealed that the family caregivers often performed the "dirty work" while the nurses fulfilled cognitive and emotional tasks such as assessment and supervision. Professional caregivers also had the choice of whether and when to provide hands on care while family carers did not. However, work transfer occurred over time as family carers were taught and expected to provide more technical or "skilled" services, and as nurses assisted informal caregivers at times when they were incapacitated. Ethical concerns arose as nurses encouraged family carers to take on responsibilities that are beyond the carers' personal boundaries. The need to view eldercare as work, regardless of who performs specific tasks, is essential.
2002
25. P5945-16
Brewer, L.
Families That Care: A Qualitative Study of Families Engaged in the Provision of Elder Care
Journal of Gerontological Social Work; Vol. 39 (3), 41-56; 2002.
Journal article (research)
This study was designed to identify approaches to family caregiving that "...preserve the well being of caregivers while maintaining an acceptable quality of care for older adults..." In particular, it focused on the differences in care provision by family teams versus primary caretakers. Twenty-two families providing care for community-dwelling individuals (aged 60 and over) were recruited for the project through regional aging and social service agencies. Semi-structured interviews were conducted with eighteen care recipients (four were unable to participate due to severe cognitive impairments), and thirty-three caregivers. Among the findings, team caregivers reported a less negative impact upon their own well-being than did primary caregivers; primary caregivers had greater difficulty in arranging for time away from caregiving responsibilities; primary caregivers reported more chronic health problems and fatigue; and team caregivers appeared to have greater access to support. A limitation of this study is that the participants were unable to be interviewed separately for a variety of reasons.
26. P5946-18
Brownell, P. & Wolden, A.
Elder Abuse Intervention Strategies: Social Service or Criminal Justice?
Journal of Gerontological Social Work; Vol. 40 (1), 83-100; 2002.
Journal article (research)
Early theorists considered elder abuse a phenomenon attributed to caregiver stress, while more recent study has focused on abuser characteristics and impairments. Such theoretical frameworks hold implications for the design and implementation of interventions. This research was designed to compare the effectiveness of the social service response to the effectiveness of the criminal justice response. Two programs serving victims of elder abuse in Queens, New York, are examined: the Crime Victims Board (CVB) program, and the Department for the Aging (DFTA) Elder Service (ES) Program. Researchers hypothesized that criminal justice interventions would be more effective in cases where victimization was defined as criminal by the New York State Penal Code, while cases not defined as criminal would be more effectively managed through social services. Data from randomly selected closed cases (27 ES and 29 CVB) was analyzed and supported the hypotheses. Of the sampled cases, 62.5 per cent were considered successfully resolved (17 ES and 17 CVB cases). A breakdown of specific types of abuse cases handled through each program is provided. Abuser and victim profiles did not differ significantly from one program to another. Of significance, financial abuse cases were more successfully resolved through the CVB program. Additionally, the CVB program provided almost an equal number of social services as the ES program.
27. N4847-8
Campbell Reay, A. & Browne, K.
The Effectiveness of Psychological Interventions with Individuals Who Physically Abuse or Neglect Their Elderly Dependents
Journal of Interpersonal Violence; Vol.17 (4), 416-431; April 2002.
Journal article (research)
The purpose of this study, conducted in the U.K., was to evaluate the effectiveness of education and anger management as an intervention for elder maltreatment. Nineteen caregivers, who had admitted to maltreatment, were referred to clinical psychology and assigned to either a group of abusers or neglectors. All victims resided with their perpetrators and none were diagnosed with dementia. All caregivers were retired, generally healthy and none were using psychotropic medication. Perpetrators were assessed pre-intervention, post-education, post-anger management and six months post treatment with the following instruments: Conflict Tactics Scale (CTS); Machin's Strain Scale (SS); Beck Depression Inventory (BDI); Beck Anxiety Inventory (BEI); Cost of Care Inventory (CCI). The results indicate a significant reduction of conflict among the abusers after anger management training and at a six month follow-up. There appeared to be no significant change in conflict scores, which remained low throughout the study, among the neglectors. Overall reductions were observed in other scales in both groups. (U.K.)
28. N4783-13
Caputo, R.
Adult Daughters as Parental Caregivers: Rational Actors versus Rational Agents
Journal of Family and Economic Issues; Vol. 23 (1), 27-50; Spring 2002.
Journal article (research)
This article explores economic motivations of adult daughters in deciding whether to provide either personal or financial care to aging parents not living in the same home. Using a sub-sample of 611 women from the Young Women's Cohort of the National Longitudinal Survey, the researcher explores the impact that attitudes towards inheritance, parental assets and other factors may have upon caregiving decisions. Findings suggest that altruism is motivational in the decision to provide personal care while economic self-interest appears at least partially motivational in the decision to provide financial assistance. In concluding, the author discusses public policy
implications.
29. P5948-18
Dobrof, J., Zodikoff, B., Ebenstein, H. & Phillips, D.
Caregivers and Professionals Partnership: A Hospital Based Program for Family Caregivers
Journal of Gerontological Social Work; Vol. 40 (1), 23-40; 2002.
Journal article (scholarship)
The authors of this article note that while informal caregiving is not a new phenomenon, the intensity and duration of caregiving has increased in recent years, and will likely continue to do so. An overview of the Mount Sinai Medical Center's Caregivers and Professionals Partnership (CAPP) is provided. The program consists of the CAPP Caregiver Resource Center, which is a bi-lingual information and referral service; the CAPP Caregiver Institute, which pairs family caregivers and health care professionals to teach skills-based workshops; and the Performance Improvement Committee on Caregiver Services.
30. P5180-14
Jolicoeur, P. & Madden, T.
The Good Daughters: Acculturation and Caregiving Among Mexican-American Women
Journal of Aging Studies; Vol. 16 (2), 107-120; 2002.
Journal article (research)
Several socio-demographic differences between Mexican-Americans and Whites may impact the caregiving experience; Mexican-Americans are more likely to have lower household incomes, to have fewer years of education, and the Mexican-American elderly population is "younger" than the general elderly population yet are more likely to have at least one significant impairment. The implication is that while Mexican-American elders may require home care assistance for longer periods of time, they will have comparatively fewer financial resources. In light of the cultural value placed upon family roles, respect for elders, and the expectation that adult children (particularly women) care for elders, researchers hypothesized that the less acculturated Mexican-American caregivers may experience a higher level of satisfaction than their more acculturated counterparts. Thirty-nine Mexican-American caregivers from a southern California city were divided into high-acculturated or low-acculturated groups and interviewed regarding their caregiving experiences. Although comparable in age, the low-acculturation group appeared in poorer health by both subjective and objective measures, and were more likely to have children living at home. Eldercare costs, including lost wages, were significant for both groups. While the high-acculturated group expressed feeling guilt, the low-acculturated group expressed feeling the burden of being caught between caring for two generations, but did not express feeling guilt. Contrary to the hypothesis, the low-acculturation group indicated less satisfaction with the caregiving experience.
31. N4842-10
Komter, A. & Vollebergh, W.
Solidarity in Dutch Families - Family Ties Under Strain?
Journal of Family Issues; Vol. 23 (2), 171-188; March 2002.
Assuming that the exchange of interpersonal care may be an indicator, this article examines the nature and determinants of intergenerational solidarity in the context of societal changes. This study, based on data gathered in the Netherlands in 1992 regarding gift exchange, focuses specifically on exchanges involving care and service. Feelings accompanying the exchange, of either love or obligation, were labeled along with the relationship to care recipient. Overall, parent and family members received twice as much assistance as friends. The researchers conclude that solidarity towards friends is generally accompanied by feelings of love while solidarity towards parents tends to be based more on Durkheimian norms of moral obligation, or inner duty. The impact of obligation and dependency on future caregiving trends are considered. (Netherlands)
32. P5126-5
Lev-Wiesel, R. & Kleinberg, B.
Elderly Battered Wives' Perceptions of the Spousal Relationship as Reflected in the Drawings of the Couple
The Arts in Psychotherapy; Vol. 29 (1), 13-17; 2002.
Journal article (research)
This study was designed to examine how older battered women perceived their relationships after physical abuse had stopped. A convenience sample of 10 participants was recruited by social workers in southern Israel. The women, aged 60-64, had experienced domestic violence for approximately 30 years, and none had ever filed for divorce or contacted the police for assistance. Although each spouse was now the caregiver for her physically or mentally disabled husband, analysis of the Kinetic Family Drawing (KFD) suggests that these women continue to view their husbands as threatening and themselves as unempowered. (Israel)
33. A495-82
Marosy, J.
Elder Care: A Six Step Guide to Balancing Work and Family
Bringing Elder Care Home Publishing; Worcester, MA; 2002.
Book
In this guide book, the author draws upon his own experiences to provide an outline for caregivers attempting to balance elder care with other family responsibilities as well as employment obligations. The steps include individualized assessment, learning about available resources, and adapting, monitoring and adjusting a customized care plan. The book also includes discussion regarding children and elder care and a section on long-distance care giving. The chapter entitled "Elder Care Resources - from A to Z" includes contact information for voluntary health and support organizations, general information regarding financial concerns, and covers a variety of related topics. The guide book is available directly from the publisher for $14.95 plus $2.50 s/h (within the U.S.) in three formats: eBook, diskette, or print version. Contact: Bringing Elder Care Home Publishing, John Paul Marosy, 52 Holden St., Worcester, MA 01605, telephone (508) 854-0431, or via the web at www.bringingeldercarehome.com .)
34. N4817-6
National Center on Elder Abuse(NCEA), Institute on Aging (IOA)
A Fact Sheet on Caregiver Stress and Elder Abuse
Produced for the NCEA by the Institute on Aging, San Francisco, CA; 2002.
Fact sheet (online)
This brochure (available in both English and Spanish) provides information on the link between caregiver stress and elder abuse and includes several resource listings. (This brochure is available for downloading in English and in Spanish.
35. N4816-6
National Center on Elder Abuse (NCEA), Institute on Aging
Preventing Stress from Becoming Harmful: A Guide for Caregivers
Produced for the NCEA by the Institute on Aging, San Francisco, CA; 2002.
Brochure (online)
This brochure describes practical strategies and lists several resources to address caregiver stress. (The brochure is also available for downloading.
36. N4818-24
Nerenberg, L., for the National Center on Elder Abuse (NCEA), Institute on Aging (IOA)
Preventing Elder Abuse by Family Caregivers
Produced for the NCEA by the Institute on Aging, San Francisco, CA.; March 2002.
Booklet (online)
This 24 page publication was designed to explore the relationship between caregiving, stress and elder abuse and to promote greater coordination of services provided by the elder abuse prevention and caregiver support networks. Part I presents an overview of the caregiving role and variations in how individuals perceive their roles and cope with stress. The concept that the degree of caregiver burden is not always equated with the degree of stress experienced is discussed and other factors are identified. Part II explores the process in which caregiver stress may lead to violence and mistreatment. Pre-existing relationship problems, low self-esteem, and mood disturbances are among exacerbating conditions. Part III describes community services to reduce caregiver stress and recommendations for professionals to more effectively support the caregiver. Part IV offers a list of resources, including national organizations, websites, training curricula and additional literature. To order, contact the Institute on Aging, San Francisco Consortium for Elder Abuse Prevention, 3330 Geary Blvd., San Francisco, CA 94118, (415) 750-4180 ext. 222. Checks only. Price: $15.00; CA residents add 8.5% sales tax. (Note: This publication is also available for downloading.)
37. P5054-9
Sanders, S. & McFarland, P.
Perceptions of Caregiving Role by Son's Caring for a Parent with Alzheimer's Disease: A Qualitative Study
Journal of Gerontological Social Work; Vol. 37 (2), 61-76; 2002.
Journal article (research)
This qualitative study was intended to add to the growing body of information regarding sons as caregivers, and the gender differences found in the caregiving experience. Researchers examined the factors that influenced adult sons' decisions to care for parents experiencing Alzheimer's disease or other progressive dementias, and the challenges they faced fulfilling the role. Eighteen sons, ranging in age from 35 to 67, who identified themselves as the primary caregiver for a parent with dementia, were interviewed regarding their prior relationship with the parent, the type of role they had assumed, their reaction to the disease, preparations for future concerns, utilization of supportive services and perceptions. Participants identified interpersonal and professional conflicts along with a range of emotional responses, including guilt and embarrassment. Many were motivated out of a sense of duty and commitment, while others indicated that the perceptions of others were influential.
38. P5937-2
Sullivan, M.
Caregiver Strain Index (CSI)
Try This: Best Practices in Nursing Care to Older Adults; Issue Number 14; February 2002.
Publication series (online)
This brief online publication, part of a series published by the Hartford Institute for Geriatric Nursing at New York University, highlights the topic of caregiver burden, and identifies the Caregiver Strain Index (CSI) as a valuable tool for identifying risks (such as caregiver depression and fatigue) that can lead to neglect of care recipients and premature institutionalization. A copy of the tool is included. (Note: This article is accessible online at: http://findarticles.com/p/articles/mi_m0FSS/is_1_13/ai_n17206620/.)
2001
39. N4580-5
Aimonino, N., et al.
The Home Hospitalization of Frail Elderly Patients
Archives of Gerontology and Geriatrics; Supplement 7,19-23; 2001.
Journal article (research)
This article summarizes a study conducted at the St. G. Battista Hospital of Turin, Italy, that was designed to assess the feasibility of home hospitalization of the advanced dementia patient. The Home Health Service (HHS) team, operating since 1985, consists of geriatricians, nurses, physiotherapists and social workers. In this study, 41 hospitalized advanced dementia patients were compared with 41 HHS advanced dementia patients. Mortality, use of anti-psychotic medications and caregiver stress were measured. There was no significant difference in mortality among the two groups. Significant stress reduction among the caregivers of HHS patients, coupled with the reduction of anti-psychotic medications used for these patients, imply that this is a viable alternative to hospitalization. (Italy)
40. L4531-13
American Medical Association
Caregiver Health - Self-Assessment Questionnaires - Resources for Physicians
American Medical Association; Chicago IL; 2001.
Assessment tool (online)
This self-assessment (printed in English and Spanish) was designed to help identify high risk situations among caregivers in order to prevent stress related illness, psychological stress and family conflict. The packet also includes recommendations and referral sources for physicians who are dealing with caregivers within the outpatient setting. (Note: Materials may be downloaded from the AMA web site at
http://www.ama-assn.org/ama/pub/physician-resources/public-health/promoting-healthy-lifestyles/geriatric-health/caregiver-health/caregiver-self-assessment.shtml.)
41. P5097-9
Ayres, M. & Woodtli, A.
Concept Analysis: Abuse of Ageing Caregivers by Elderly Care Recipients
Journal of Advanced Nursing; Vol. 35 (3), 326-334; 2001.
Journal article (research)
This article addresses elder abuse as a concept within the context of the caregiver-care recipient relationship, with special attention to the abuse of aging female caregivers. Audiotaped interviews from a community based research project (Philips et al., 1996) were analyzed qualitatively according to the principles of concept analysis and antecedents. Verbal, physical and psychological abuse was described. Participants reported experiencing physical and psychological harm as a consequence of the abuse, including injuries, stress-related physical symptoms (stomach problems, headaches, tension), depression and anxiety. Nurses and health care professionals are urged to consider the impact of abuse upon the health and well-being of caregivers.
42. L4493-11
Bedard, M. et al.
The Zarit Burden Interview - A New Short Version and Screening Version
The Gerontologist
Vol. 41 (5), 652-657; 2001.
Journal article (research)
The article discusses the process used to develop both a short and a screening version of the 22-item Zarit Burden Interview, the most consistently used measurement tool of dementia caregiver burden. Both a 12-item version (short) and a 4-item version (screening) were produced. The results were analyzed and compared to those of the longer version. The authors believe that the short version provides a more expeditious research instrument without sacrificing validity, but urges more research on the validity of this instrument's use in longitudinal studies.
43. L4499-9
Bergeron, L.
An Elder Abuse Case Study: Caregiver Stress or Domestic Violence? You Decide
Journal of Gerontological Social Work; Vol. 34 (4), 47-63; 2001.
Journal article (scholarship)
In this article, a clinical social worker demonstrates through a case study the complexities of assessing elder abuse in the presence of a long standing history of domestic violence. Two theories of elder abuse are discussed: the caregiver stress theory and the domestic violence theory. A key element of this article is the premise that elder protection is "victim-focused" rather than "perpetrator-focused" and that this has implications for reporting, prosecution, prevention and intervention. Another point of debate is whether a "well" spouse (one who is not physically dependent or cognitively impaired) can be the victim of abuse by a partner who is incapacitated.
44. N4745-9
Browne, C. & Braun, K.
When a Case Management Program Closes: Impact as Perceived by Frail Elders and Their Family Caregivers
The Journal of Applied Gerontology; Vol. 20 (3), 338-355; September 2001.
Journal article (research)
This article explores the impact of the closing of Project Malama, a Hawaiian geriatric case management program servicing the frail elderly of Oahu. The social service brokerage program was federally funded in 1980 but became state supported. Due to financial limitations, the program was abruptly terminated in 1995. In this study, 55 former clients and 106 caregivers (predominantly Pacific and Asian Islanders) were interviewed regarding their physical and mental well-being six months following termination. In the year following, there was an increase in the death rate among clients from the year preceding the closure (from 6 percent to 14 percent). Additionally, 47 percent of the caregivers felt that the elders' health had declined after the closure, while 49 percent of the caregivers felt that their own health had declined, and 56 percent experienced an increase in anxiety and stress since termination. In cases when caregivers revealed abusing the elders (5) and expressed suicidal ideation (3) referrals for immediate intervention were made. The authors urge that researchers continue to document the status of former clients in the wake of funding cuts to services.
45. P5715-6
Campbell Reay, A. & Browne, K.
Risk Factor Characteristics in Carers Who Physically Abuse or Neglect their Elderly Dependents
Aging & Mental Health; Vol. 5 (1), 56-61; 2001.
Journal article (research)
The purpose of this study was to analyze the differences in risk factors of caregivers who physically abuse dependent elders and those who neglect them. Of the nineteen participants referred for psychological counseling, nine had admitted to physical abuse and ten had admitted to neglect. All abusers lived with their victims and were reported to be in good health. Participants were assessed (by interview and by the administration of five screening tools) for the presence of risk factors that had previously been identified in elder abuse literature, including a history of substance abuse, a history of mental illness, a history of childhood abuse, and caregiver stress and isolation. Of the results, seven of the nine physical abusers reported heavy alcohol consumption, compared to only one participant in the neglecting group. Six of the nine perpetrators had been abused by their fathers in childhood (none were current care recipients), as compared to only one in the neglecting group. Abusers were more likely to experience severe depression than the neglectors, while neglectors were prone to mild depression and higher levels of anxiety. (U.K.)
46. N4792-10
Chiu, S. & Yu, S.
An Excess of Culture: the Myth of Shared Care in the Chinese Community in Britain
Ageing and Society; Vol. 21 p681-699; 2001.
Journal article (research)
This article explores the concept of "shared care" for Chinese elders living in Britain, while offering an overview of traditional Chinese values. The first section of the paper provides a discussion of Confucian, filial values and emphasizes that the ideal of the multigenerational family living together is impractical for most families due to economic constraints. The second section describes the characteristics of the Chinese in Britain, and the third section draws upon two research studies of care patterns (1991 and 1998) conducted by the authors. Although the authors admit that the samples are small (60 and 55 interviewees in each) and somewhat biased, they identified some common and socially relevant themes. While many elders live with their families, this does not guarantee quality social contacts or adequate personal care. Culturally-sensitive social policies are needed to provide care services and to strengthen families in order to enhance their care provision and insure that the elder population does not get lost in the "twilight zone" between public and private assistance.(U.K.)
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