Alzheimer's disease caregiving information and skills. Part I: care recipient issues and concerns

Increasing attention has been given to testing clinical trials with family caregivers of the elderly. More recent intervention studies indicated that caregiver skill-building interventions may be more effective than information/support interventions. Researchers have given considerable attention to the content and support needed by family caregivers, but we know less about how this content and support translates into caregiver skills. This is the first in a series of three articles on a study in which qualitative methods were used to analyze summaries from the group component of a larger caregiver clinical trial. In this article we identify content and skills that dementia family caregivers need in addressing three major care recipient issues and concerns: (a) difficult behaviors and emotional responses, (b) personal and instrumental activities of daily living, and (c) cognitive decline.     

Meeting the supportive needs of family caregivers in palliative care: challenges for health professionals

Caring for a dying relative is demanding, and family caregivers have acknowledged many unmet needs associated with their caregiver role. Consistently, caregivers of dying patients with cancer have reported that they need more support and information from health care professionals. Moreover, a number of palliative care clinicians and researchers have called for interventions to enhance the support offered to family caregivers. However, before researchers can develop and test palliative care interventions directed to families, it is important to identify barriers that may confront health care professionals with regard to the provision of supportive family care. For new interventions to be feasible they must be applicable within the constraints of current palliative care service delivery environments. This paper provides an account of issues that may impinge on optimal transference of supportive strategies from health care professionals to family caregivers of patients receiving palliative care. By acknowledging these barriers to supportive care, researchers and health care professionals can begin to design and implement interventions that are clinically relevant and more likely to be effective.     

Distress and quality of life concerns of family caregivers of patients undergoing palliative surgery

There has been limited research in the field of palliative care and even far less focus on the area of palliative surgery. Although patient needs are paramount, family caregivers require information and support at the time surrounding surgery for advanced disease. The aim of this prospective cohort study of family caregivers of patients with advanced malignancies was to measure the impact of palliative surgery on dimensions of quality of life (QOL) for these family members. Family caregivers completed assessment tools preoperatively and at approximately 3 weeks and 2 and 3 months postoperatively. Parameters of physical, psychological, social, and spiritual QOL were measured on a scale of 0 (poor) to 10 (good) using the City of Hope QOL-Family instrument. Caregivers recorded their general distress on the Distress Thermometer using a scale of 0 (none) to 10 (severe). Analysis of the data revealed that family caregivers had disruptions similar to patients in physical, psychological, social, and spiritual dimensions of QOL. Findings suggest that caregivers should be assessed for distress and QOL concerns both before and after surgery for patients with advanced malignancies. Although caregiver concerns cannot always be eradicated, resources and interventions to support family caregivers are vital to improving QOL.     

Advanced home care for cancer patients at the end of life: a qualitative study of hopes and expectations of family caregivers

It is increasingly common that cancer patients are cared for at home at the end of life, with help from advanced home care teams. This may have positive implications for cancer patients and their families, but it may also be burdensome to the family caregivers with implications for their health and well-being. This qualitative study was therefore initiated to prospectively explore how family caregivers reason about their expectations of providing end-of-life care at home for relatives with cancer, enrolled in advanced palliative home care units. Ten interviews were conducted with 11 family caregivers at enrollment to the home care unit. A form of constant comparative analysis was used to generate two main themes from the data. One theme concerned the role transition into becoming a family caregiver, whereas the other theme relates to the transition to a new life situation of the caregiver (him/herself). The family caregivers describe themselves as the persons primarily bearing responsibility and providing care for their dying relatives. They were found to have many concerns about their own situation, especially in regard to issues temporally after the death of the patient, but seemed to have few expected sources of support related to these concerns. Professional support is described as expected primarily for care-related tasks, although hopes may be expressed about support in other areas. The distinction between resources described as existing in theory and those used in practice also are apparent in analysis of the interviews. If home care is to be a positive alternative to hospital care, individual expectations should be considered when planning supportive care.     

Caregiver care

In 2009, nearly 66 million Americans (three in 10 U.S. households) reported at least one person providing unpaid care as a family caregiver. More adults with chronic conditions and disabilities are living at home than ever before, and family caregivers have an even higher level of responsibility. Caring for loved ones is associated with several benefits, including personal fulfillment. However, caregiving is also associated with physical, psychological, and financial burdens. Primary care physicians can aid in the identification, support, and treatment of caregivers by offering caregiver assessments-interviews directed at identifying high levels of burden-as soon as caregivers are identified. Repeat assessments may be considered when there is a change in the status of caregiver or care recipient. Caregivers should be directed to appropriate resources for support, including national caregiving organizations, local area agencies on aging, Web sites, and respite care. Psychoeducational, skills-training, and therapeutic counseling interventions for caregivers of patients with chronic conditions such as dementia, cancer, stroke, and heart failure have shown small to moderate success in decreasing caregiver burden and increasing caregiver quality of life. Further research is needed to further identify strategies to offset caregiver stress, depression, and poor health outcomes. Additional support and anticipatory guidance for the care recipient and caregiver are particularly helpful during care transitions and at the care recipient's end of life.     

Barriers to caregiver administration of pain medication in hospice care

Barriers to adequate pain management in hospice and palliative care settings are an important area of investigation. In this study, a Caregiver Pain Medicine Questionnaire (CPMQ) was developed and psychometrically tested. The CPMQ is a 22-item self-report instrument that measures concern about reporting pain, concern about administering analgesics, and difficulty administering analgesics. One hundred fifty-one caregivers of patients admitted to three Chicagoland hospice agencies participated; these individuals were family members, hired caregivers in the home, or staff nurses in skilled care facilities. While only a small percentage of the caregivers expressed concern about communicating information about the patient's pain, more than a quarter were concerned about addiction, tolerance, and side effects from medications. A fourth of the caregivers had difficulty administering medications because of fear of doing something wrong and difficulty deciding which or what amount of medications to give. Male caregivers and hired caregivers had greater concerns, both about reporting information about the patient's pain and administering medications. Greater concerns were also evident among less educated caregivers, caregivers who worked in blue-collar jobs, and caregivers who were homemakers or retired. Concerns of caregivers in the home were significantly greater than staff nurse caregivers in skilled care facilities only in the belief that pain could not be controlled and concern about addiction. Caregivers who had greater concern about addiction and tolerance, and more difficulty administering medications, rated the patient's pain as less completely controlled. These findings remind hospice staff members of the importance of assessing specific caregiver concerns about medication administration and devising appropriate strategies to address them.     

Efficacy of behavioral interventions for dementia caregivers

Behavioral symptoms of Alzheimer's disease, particularly agitation, appear to be a major contributing factor to the emotional distress exhibited by family caregivers. Psychosocial interventions have been shown to reduce caregiver emotional distress, but few studies have examined the efficacy of these interventions with caregivers exposed to high levels of dementia-related behavioral symptoms. The purpose of this study is to test the efficacy of a caregiver skill building intervention in reducing emotional distress to agitated behaviors of care recipients. This study analyzed data from a subgroup of caregivers who participated in a larger randomized clinical trial (N = 295). Data from 143 caregivers of family members with baseline agitated behaviors indicate that the skill building intervention was more effective than an information and support oriented comparison condition in reducing emotional distress over an 18-month period. These findings indicate that dementia caregivers exposed to agitated behaviors can benefit from psychosocial interventions, particularly those aimed at building behavioral management skills.     

Rethinking Intervention Strategies in Stroke Family Caregiving

Stroke is a condition that affects both patients and family members who provide care and support. Because stroke is an unexpected traumatic event that suddenly forces family members into a caregiving role, caregivers often experience an overwhelming sense of burden, depression, and isolation; a decline in physical and mental health; and reduced quality of life. Caregiver health is inextricably linked to a stroke survivor's physical, cognitive, and psychological recovery. Evidence suggests that informational interventions alone are not as effective in meeting the complex needs of stroke caregivers as interventions that combine information with other support services. This article discusses issues related to stroke caregiving and proposes comprehensive strategies designed to meet the poststroke recovery needs of both patients and caregivers. Suggested strategies include a comprehensive assessment specific to caregiver needs, skills, and resources and case management services designed to provide continuity of care across the stroke‐recovery trajectory.     

Home caregivers of the person with advanced cancer: an Australian perspective

Australian palliative care services are predominantly community based, with an emphasis on enabling the person to live at home for as long as possible. Home care of the person with advanced cancer receiving palliative care in the community depends largely on the availability of a family caregiver. Family caregivers are required to assess, monitor, and deliver complex therapeutic interventions such as pain and symptom control, including the administration and adjustment of complex medication regimens. This article reports a study of 42 family caregivers providing home care to persons with advanced cancer. This study sought to describe a number of caregiver variables that may influence reactions to caring roles and caregiver well-being. The study found that family caregivers are significantly involved in symptom management, and that they take on almost total responsibility for routine household tasks. In addition, the caregiver role has a negative impact on caregiver health, schedule, anxiety, and energy. However, caregivers find significant meaning in their role and feel relatively well prepared for caregiving. The results of this study support the applicability of the vast international literature on caregiver issues for the Australian setting and suggest the need to move toward development of caregiver-focused nursing interventions.     

Interventions to reduce the burden of caregiving for an adult with dementia: a meta-analysis.

Because of conflicting results, in order to clarify the state of the science it was necessary to do a systematic analysis of the literature on research testing the effect of interventions on the burden of persons caring for family members with dementia. The purpose of this study was to evaluate, using meta-analytic techniques, those intervention strategies (support group, education, psychoeducation, counseling, respite care, and multicomponent) designed to help caregivers cope with the burden of caregiving. Using meta-analytic methods developed by Glass, McGraw, and Smith (1981) and Hedges and Olkin (1985), 24 published research reports testing 27 treatments for caregivers of adults with dementia were synthesized. Overall, the analysis showed that collectively the interventions had no effect on caregiver burden. Only the category of multicomponent interventions significantly reduced caregiver burden. Burden may be too global an outcome to be affected consistently by intervention. Better and more precise measures are needed to evaluate the effects of caregiver interventions properly.     

Needs, concerns, strategies, and advice of stroke caregivers the first 6 months after discharge.

During the first few months after a stroke, family caregivers must quickly learn how to care for the stroke survivor in the home setting. Although there are some studies that addressed the needs and concerns of stroke caregivers during the early poststroke period, there are very few caregiver studies that reported strategies used by caregivers to deal with their needs and concerns, and studies are lacking that reported the advice that caregivers would offer to others. The purpose of this study was to determine the self-reported needs, concerns, strategies, and advice of family caregivers of stroke survivors during the first 6 months after hospital discharge. Using openended questions, we individually interviewed 14 female family caregivers of stroke survivors (8 African American, 6 white) to identify their needs and concerns, strategies they used to deal with stroke, and advice they would offer to other stroke caregivers. Findings revealed five major categories of caregiver needs and concerns: information, emotions and behaviors, physical care, instrumental care, and personal responses to caregiving. Based on the findings, an initial needs and concerns checklist was developed, along with a list of caregiver strategies and advice. Upon further testing, the needs and concerns checklist, as well as the list of strategies and advice, may help to identify relevant areas for caregiver intervention.     

Individual telephone support for family caregivers of seriously ill cancer patients.

Medical-surgical nurses are an important source of information and guidance for family caregivers during health care crises. The concerns expressed by family caregivers to nurse interventionists during a supportive and informational telephone intervention are described in this study. An analysis of telephone call content using constant comparison methods identified major stressors of the family caregiver during the illness trajectory.     

Barriers to the analgesic management of cancer pain: a comparison of attitudes of Taiwanese patients and their family caregivers

The purposes of this study were as follows: (1) to compare the attitudes which were considered to be barriers to cancer pain management held by Taiwanese cancer patients and their family caregivers; (2) to determine if these barriers were related to patient hesitancy to take analgesics and/or family caregiver hesitancy to administer analgesics: and (3) to determine if attitudinal barriers by patients and/or family caregivers predicted the adequacy of analgesics that patients used. A total of 159 dyads of oncology outpatients and their primary family caregivers (n = 318) participated in this study. The instruments completed by patients consisted of the Barriers Questionnaire-Taiwan form, the Brief Pain Inventory-Chinese version, the ECOG performance status scale, and a demographic and medication questionnaire. Family caregivers completed the Barriers Questionnaire-Taiwan form and a demographic questionnaire. The data in this study revealed that patients and family caregivers had attitudinal barriers to pain management and these concerns were positively correlated between patients and caregivers. Patient concerns were related to their hesitancy to take analgesics and, similarly, caregiver concerns were related to their hesitancy to administer analgesics. Most importantly, patient and caregiver concerns had an impact on how the patients' pain was managed: (1) patients and their family caregivers with higher levels of concerns used inadequate analgesics as compared to patients using adequate analgesics; (2) family caregiver barriers (concerns) were a significant predictor of inadequate management of cancer pain (after controlling for demographic and disease variables). Therefore, educational interventions for overcoming these barriers for both patients and their family caregivers may have potential for improving the management of cancer pain in Taiwan.     

Caregiving for the terminally ill: at what cost?

This literature review exposes the nature and extent of physical and psychosocial morbidity and economic disadvantage, home palliative caregivers suffer as a direct result of their caregiving role. Research has demonstrated that caregivers providing support to individuals receiving palliative care report unmet needs for information, communication, service provision and support from health and community services. Three sets of challenges are highlighted in this literature review which help explain why the needs of home palliative caregivers are largely unmet: (i) barriers to seeking help; (ii) a dearth of research-based interventions focused on reducing the negative aspects of caregiving; and (iii) a number of impediments to effective policy and service development for family caregivers. Furthermore, invited submissions from caregivers echoed and confirmed the issues reported in the literature. Recommendations for enhancing caregiver support are outlined.     

Family caregiver burden by relationship to care recipient with dementia in Korea

The purpose of this study is to compare demographic and clinical characteristics of caregivers and care recipients by caregiver type (i.e., daughter, son, daughter-in-law, and spouse) and to compare the caregiver burden among each type of caregiver. A cross-sectional survey design was used involving 157 primary family caregivers and their care recipients who were diagnosed with dementia. Participants were from the Korean capital and the surrounding suburbs. Spouse caregivers rated themselves as having poorer health and less social support than adult child caregivers did. Those cared for by daughters-in-law were older and demonstrated more memory and behavioral problems than those by spouses, sons, or daughters. Spouses perceived the highest burden among caregivers. Nursing interventions could be developed on the basis of the specific type of burden that various caregivers experience. For future studies, exploring the earlier marital relationship between spouse caregiver and care recipient would be useful for understanding the burden of spouse caregivers.