Caring for a terminally ill family member can be extremely stressful, and stress is known to have a negative influence on aspects of cognition. In contrast to the well-known physical and mental health risks associated with caregiving, little is known about its impact on cognitive functioning.
The primary objective of this study was to explore cognition among caregivers of palliative family members with a battery of neuropsychological tests. A secondary objective was to examine changes in cognition following caregiving by retesting a subset of participants at least 6 months after the death of their care recipient.
While caregiving, 27 participants completed an assessment battery measuring attention, learning, and memory, as well as intelligence, mood, and general health; 22 participants completed this battery again post-caregiving. We compared caregivers' cognitive performance to healthy normative samples.
Participants who were caring for palliative relatives exhibited significant impairments in attention, including difficulty monitoring their performance and regulating their attentional resources. In contrast, participants' episodic and working memory performance was not impaired while caregiving. A mixed pattern of improvement and worsening of cognitive functioning was evident among caregivers retested after their family member's death.
In addition to the well-documented physical and mental health risks associated with caregiving, this study adds to a small body of literature demonstrating impaired cognitive functioning among family members providing end-of-life care. Secondary findings of both improvement and deterioration of cognition post caregiving provide tentative support for the possibility of reversing certain cognitive deficits by reducing caregiver stress.
Cites: N Engl J Med. 2006 Feb 16;354(7):719-3016481639
Research has shown that several variables influence the burden of primary caregivers of cancer patients staying at home in the palliative phase, but the associations between these variables have hardly been explored. The aim of this study was to examine the associations of theory-driven variables with the caregivers' burden by means of path analysis. The sample consisted of 96 caregivers of cancer patients in the palliative phase staying at home recruited from a hospital trust in Norway. The dimensions of burden from the Caregiver Reaction Assessment, namely self esteem, lack of family support, impact on finances, and impact on daily schedule, were used as the dependent variable. The following independent variables were tested in the models: the patients' levels of pain, fatigue, and nausea; and the caregivers' physical quality of life, anxiety and depression, and social support. The Partial Least Squares approach to structural equation modelling was used for the path analysis. Model 1 shows the direct associations between the independent variables and the dependent variable, explaining 16% of the variance in caregiver burden. Model 1 supports the finding that only caregivers' depression has a direct significant association with caregiver burden, and shows further that the effects of the other independent variables on burden are mediated through depression. In Model 2, anxiety and depression are mediating factors between three other independent variables and caregiver burden, and 12% of the variance is explained. Model 2 supports none of the independent variables as antecedents of burden. Testing of the models suggested that caregivers' depression was the main factor associated with caregiver burden, but also an important mediator of indirect associations of indirect associations of caregivers' anxiety and physical health.
Embert Van Tilburg, a specialist in palliative care, shares his insights about the total care of those who are terminally ill due to cancer or AIDS, or of the many elderly who are "dying in the slow lane" in so many of our chronic care institutions.
Home-based family caregivers are often assisted by home care services founded upon principles of health promotion, such as empowerment. Using an interpretive approach and in-depth qualitative interviews, the authors examine descriptions of family empowerment by leaders and managers in the field of home health care in the province of British Columbia, Canada. In a culture of fiscal restraint, dying at home, and self-care, participants described how home care nurses empower family caregivers to meet these objectives. This involves educating and informing caregivers, engaging them in planning and decision-making, and reassuring them that their role is manageable and worthwhile. Though some participants viewed providing supports as empowering (e.g., during times of crisis), others viewed them as disempowering (by promoting dependence). Empowered caregivers were characterized as able to provide home care, confident of their capabilities, and believing that their work is positive and beneficial. The long-term goal of empowerment was characterized as client self-care and/or family care and decreased dependence on formal services.
Palliative care is an integral part of care and takes place in many settings--including the home, special accommodations, and hospitals. However, research shows that palliative care often ends with a death in the hospital due to the heavy burden on the primary caregiver. This study explores the meaning of being the primary caregiver of a close one who is terminally ill and is based on qualitative interviews with six primary caregivers of a terminally ill individual at home. The findings are discussed in the light of the theoretical concepts of liminality, lived body, and power. A potential impending risk exists of being abandoned when one is the primary caregiver to a close one who is terminally ill. This situation calls for professional caregivers to take responsibility and to respond to these, often unspoken, needs. This is particularly important concerning bodily care and the medical treatment regimen. In addition, when friends and relatives are absent, there is an ethical demand on professional caregivers to compensate for this lack and to compensate for this need. Palliative home care demands care that is person-centered--including the individual's history, family and loved ones, and individual strengths and weaknesses.
Palliative care services have made significant contributions to those needing end-of-life care, but the effect of these services on informal caregivers is less clear. This article reviews the literature and examines the influences of palliative care services on caregivers of people who are dying of cancer, HIV-related illnesses, and illnesses of later life.
Based on questions that we developed from the literature review, we conducted six focus groups in Toronto, Thunder Bay, and Ottawa, Canada, with informal caregivers about their experiences with caregiving and with palliative care services.
We outline the major themes relating to the 42 focus group participants' experiences of giving support and getting help.
Our findings help us better understand the common concerns of caregivers of terminally ill seniors, people with HIV/AIDS, and people with cancer. The article discusses the implications of participants' experiences for palliative care service providers.
Heart failure is a chronic, fatally progressive and incurable condition characterized by periods of apparent stability interspersed with acute exacerbations. Treatment models have historically emphasized management of acute exacerbations of cardiovascular disease, during which end-of-life issues figure frequently and prominently, though in a setting that is inappropriate to address the comprehensive needs of patients and their families. Consequently, in comparison to patients with malignancy, heart failure patients at the end of life are less likely to access palliative resources, and more likely to access in-patient care and cardiovascular procedures.
Recent reports and position statements have emphasized the following critical needs for provision of optimal heart failure care: a) Cardiovascular specialists require training to obtain basic skills for provision of palliative care to management of end-of-life issues; b) Discussion of end-of-life issues should be introduced as early as feasible in patients with heart failure and should be updated with changes in clinical status; c) Provision of palliative care should be integrated into a team approach; d) Patients with heart failure frequently suffer symptoms which are not typically considered 'cardiovascular', such as pain, social/functional and psychological. Patients should be assessed for these symptoms, which should be treated.
This report summarizes many of these suggestions and outlines future directions for the expansion and improvement of this critical need for heart failure patients.
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.
To empirically describe the sleep experience of family caregivers (n=13) of advanced cancer patients.
Mixed methodology using: family interviews; Epworth Sleepiness Scale (ESS); Pittsburgh Sleep Quality Index (PSQI); and actigraphy measurement. Qualitative data analysis utilized constant comparative content techniques. Actiware for the actigraphy data and the Statistical Package for the Social Sciences-15 (SPSS-15) generated descriptive and correlation statistics.
The overarching theme "sleeping with one eye open" captures the vigilant nature of caregivers' sleep experiences. Caregiver narratives were validated by quantitative findings: 5 of the family caregivers (38.5 percent) had an ESS score > or =11 indicative of excessive daytime sleepiness, all caregivers had a PSQI global score >5 indicative of moderate to severe sleep problems, and actigraphy scores--including total sleep time, sleep efficiency, and time awake after sleep onset--fell beyond normal values documented in the literature.
Impeccable assessment of the patient's and family's sleep status, sleep education, intervention strategies, and high-quality respite services are critical in community-based palliative care.
As family caregivers assume more prominent roles in the provision of home care to persons with serious illness, investigators must test the effectiveness of novel interventions to facilitate family caring for cancer patients. This article is based on results derived from a larger study carried out in Canada that was designed to compare 98 advanced cancer patient and family caregiver perceptions of 32 patient symptom experiences as captured by the Memorial Symptom Assessment Scale. We examined two main questions: (1) whether "natural" family caregivers' perceptions of patient lack of energy and worrying are more closely related to a self- or patient-oriented viewpoint and (2) whether induced "imagine-patient" perspective-taking can assist caregivers to achieve better perceptual accuracy. The caregiver's natural responses to neutral instructions that neither encouraged nor discouraged perspective-taking served as the baseline comparison with three other instructional sets, in which caregivers were prompted to: (1) provide a self-report on their own symptom experiences, (2) imagine how they would feel in the patient's situation (imagine-self), or (3) imagine how the patient would respond to his or her symptom situation (imagine-patient). Findings suggested that the family caregivers' natural judgments correspond most closely to what they do under an imagine-patient set than to what they do under any other set. Findings with respect to accuracy indicated that instructions to imagine the patient's perspective helped to prompt adjustments down from a self-oriented viewpoint, although definitive conclusions were precluded by difficulties with order effects.