Family support--a burden to patient and caregiver.

The aim of this paper was to describe family support in terms of the sources as well as the consequences of burden for caregivers, patients and family interaction. Caregivers' sources of burden were related to difficulties in coping with patients' emotional responses, physical complaints and altered life style behaviour as well as future oriented factors. Consequences in terms of caregivers' perceptions of emotional distress and personal losses are elucidated. In terms of family support, when focusing on sources of burden for patients' concerning family support, emotional support is emphasised and related to overprotection. Two different definitions of the overprotection concept are used in order to elucidate different consequences of the phenomenon. Sources and consequences of burden are also related to family interaction. The family is regarded as a system in which a cardiac disease may cause an imbalance. Poor marital quality or poor family functioning is described as a hindrance to a new balance. To summarise, the reviewed literature unanimously shows that the interactive support between family members when dealing with cardiac disease constitutes a considerable emotional burden. Therefore the support for emotional communication within the family should take priority. The knowledge described can provide a foundation for the development of family support in the cardiac area.     

Caring for a relative with dementia: family caregiver burden

AIM: This paper is a report of part of a study to investigate the burden experienced by families giving care to a relative with dementia, the consequences of care for the mental health of the primary caregiver and the strategies families use to cope with the care giving stressors. BACKGROUND: The cost of caring for people with dementia is enormous, both monetary and psychological. Partners, relatives and friends who take care of patients experience emotional, physical and financial stress, and care giving demands are central to decisions on patient institutionalization. METHOD: A volunteer sample of 172 caregiver/care recipient dyads participated in the study in Cyprus in 2004-2005. All patients were suffering from probable Alzheimer's type dementia and were recruited from neurology clinics. Data were collected using the Memory and Behaviour Problem Checklist, Burden Interview, Center for Epidemiological Studies-Depression scale and Ways of Coping Questionnaire. FINDINGS: The results showed that 68.02% of caregivers were highly burdened and 65% exhibited depressive symptoms. Burden was related to patient psychopathology and caregiver sex, income and level of education. There was no statistically significant difference in level of burden or depression when patients lived in the community or in institutions. High scores in the burden scale were associated with use of emotional-focused coping strategies, while less burdened relatives used more problem-solving approaches to care-giving demands. CONCLUSION: Caregivers, especially women, need individualized, specific training in how to understand and manage the behaviour of relatives with dementia and how to cope with their own feelings.     

Reducing the burden of dementia in Korea

There has been a dramatic increase in the number of persons with dementia in Korea, and the number is expected to continue to increase. Dementia is increasingly a condition for which there are effective treatments and services. Because most adults work full-time in addition to having other family responsibilities, the government of Korea and the community are more involved in helping persons with dementia, than in the past. Nurses are needed to help with dementia research, public policy, education, and healthcare in Korea and elsewhere.     

The relationship between caregiver burden, caregivers' perceived health and their sense of coherence in caring for elders with dementia

Aim. The aim of this study is to examine associations between caregiver burden, perceived health and sense of coherence in family caregivers to persons with dementia living at home. Background. Most of the studies on family caregivers have focused on burden and morbidity. However, the caregiver's sense of coherence and perceived health have not been studied earlier in relation to caregiver burden. Design. A cross‐sectional investigation design was used. Methods. Older persons, 2238 subjects, with any form of social services, were invited to an assessment of cognitive capacity. Those who had cognitive decline (255) were invited for a medical examination and 130 persons were diagnosed as having dementia. The family caregivers to persons with dementia answered a questionnaire including a caregiver burden scale, the Nottingham health profile scale, sense of coherence scale and the Euroqol instrument. Results. The family caregivers experienced moderate burden, and strong associations were noted between burden, especially isolation, disappointment and emotional involvement with perceived health and sense of coherence, adjusted for age and relationship. Caregivers with lower burden reported significantly better perceived health and higher mean score of sense of coherence than caregivers with higher burden. Conclusions. Assessment of status of family caregivers of persons with dementia living at home seems to be gaining considerable importance. The caregiver burden scale and the sense of coherence scale seem to be highly useful for identifying carers at risk of stress, pattern of burden and coping strategies. Relevance to clinical practice. Nurses can help family caregivers to identify their negative experiences about caregiving and can help them reflect upon their coping strategies to find balance in their situation. Risk groups of caregivers may be identified, especially those with low perceived health and sense of coherence, for early interventions to reduce burden.     

Pain in persons with dementia and the direct and indirect impacts on caregiver burden

ObjectivesUnresolved pain is related to neuropsychiatric symptoms (NPS) in persons living with dementia (PLWD), and an increase in NPS is distressing for PLWD and their caregivers. Hence, we examined whether pain in PLWD was related to caregiver burden and whether caregiver upset with NPS mediated this relationship.MethodWe examined, cross-sectionally, the relationships among pain in PLWD, caregiver burden, and upset with NPS. Data from 272 PLWD and their caregivers who participated in the Advancing Caregiver Training (ACT) trial were analyzed using structural equation modeling (SEM).ResultsModel fit was satisfactory, and caregiver upset with NPS fully mediated the association between pain in PLWD and caregiver burden.ConclusionCaregiver upset with NPS helps explain the relationship between pain in PLWD and burden in their caregivers. Pain and NPS are amenable to modification, as is caregiver burden, suggesting great opportunity to impact the lives of PLWD and their caregivers.     

Caregiver competence to prevent home injury to the care recipient with dementia.

Home safety is a major concern for persons with a progressive dementia, such as Alzheimer's disease, because much direct care is provided in the home setting. This study used the Home Safety/Injury Model as a frame work to describe the domain of caregiver competence, one of the model's key constructs. Interview data from the perspectives of 17 informants yielded a total of 68 clinical situations that allowed exploration of the scope and dimensions of caregiver competence to prevent accidents in the home. The factors most influential for effective caregiver prevention of home injury were family support, an acceptance and ability to make role changes, teaching and role modeling from professionals, and long-standing values and family traditions. No single factor was sufficient to achieve effective caregiving for making the home safer, but the strength of one or two factors could compensate for the absence of others.     

Family caregiver perceptions of end of life in persons with and without dementia

BackgroundWe compare the End of Life [EoL] period, the period of decline to death, for persons with dementia [PwD] to those without dementia, examining the duration and number of stages, and their precipitating events.MethodsIn this cross-sectional study, 70 primary caregivers of decedents were interviewed. Frequencies were compared using the McNemar statistical test.ResultsPwD were more likely to be female and older, compared to those without dementia. For PwD, the reported duration of the EoL period was significantly longer, involved more stages, and included a longer first stage. Precipitating events for EoL were more likely to include cognitive decline for PwD, but for those without, more likely to involve a new medical diagnosis or decline in health status.DiscussionEnd of Life as the final stage of development differs significantly between the two populations in length and other parameters. This has considerable implications for the experiences of PwD.     

Communicating through caregiver singing during morning care situations in dementia care

Scand J Caring Sci; 2011; 25; 160–168
Communicating through caregiver singing during morning care situations in dementia care It is well known that persons with dementia (PWD) have problems expressing and interpreting communication, making interaction with others difficult. Interaction between PWD and their caregivers is crucial, and several strategies have been investigated to facilitate communication during caregiving. Music therapeutic caregiving (MTC) – when caregivers sing for or together with PWD during caregiving activities – has been shown to enhance communication for PWD, evoking more vitality and positive emotions. The aim of this study was to describe how PWD and their caregivers express verbal and nonverbal communication and make eye contact during the care activity ‘getting dressed’, during morning care situations without and with MTC. Findings revealed that during the situations without MTC, the caregivers led the dressing procedure with verbal instructions and body movements and seldom invited the PWD to communicate or participate in getting dressed. Patterns in responses to caregivers’ instructions included both active and compliant responses and reactions that were resistant and aggressive, confused, and disruptive. In contrast to the ‘ordinary’ morning care situation, during MTC, the caregivers seemed interested in communicating with the PWD and solicited their mutual engagement. Although verbal communication consisted of singing about things other than getting dressed, e.g. dancing, love, sailing, God, the PWD mostly responded to caregivers in a composed manner, by being active, compliant, and relaxed, though some were also resistant or incongruent. The authors conclude that MTC could be a way for PWD and their caregivers to successfully interact and co‐operate during caring situations, as it seems to evoke enhanced communication for both partners in this context.     

浅谈老年痴呆症患者的家庭照料

随着人口的老龄化 ,阿尔茨海默氏病 (Ａｌｚｈｅｉｍｅｒ′ｓｄｉｓｅａｓｅ ,ＡＤ)、多发梗死性痴呆症及其他疾病引起脑部损害所致的痴呆症逐年增多。由于老年痴呆症的特点是患者的记忆、智能和性格在意识正常的情况下受损 ,从而使患者从初期的健忘逐渐发展为记忆力明显衰退、怪异动作增加 ,明显影响日常生活 ,直至无法辨认家人 ,语言能力日见迟钝 ,说话无法理解 ,不能处理个人卫生 ,最后生活不能自理 ,完全依赖他人。因此 ,对老年痴呆患者的家庭照料就显得尤为重要。1日常生活方面老年痴呆症患者对于处理一些起居活动如进食、如厕等都会遇…     

Analysis of caregiver burden in palliative care: An integrated review

The inclusion of caregivers in a holistic care approach represents a basic principle in palliative care. However, many palliative care professionals have a lack of understanding of difficulties or unmet needs among caregivers. To enhance the quality of life of caregivers and the quality of care for patients, healthcare professionals should be better informed about the constructs of caregiver burden. The aim of this study is to synthesize the concept of caregiver burden in palliative care, providing implications for the caregivers and their support systems. This concept analysis study adopts the integrative review approach and the basic text analysis method (ie, word frequency). The PubMed, CINAHL, Embase, and PsycINFO databases are explored for eligible studies. From this literature search, 66 articles from 1998 to 2018 are located. After data collection is completed, the two authors independently evaluate the quality of studies published before 1 September 2018. The caregiver burden is then redefined with its attributes, antecedents, consequences, empirical referents, and facilitators. It is recommended that the multidimensional concept of caregiver burden in palliative care be measured by considering caregiver characteristics and the caregiving context.     

Family care of the elderly and caregiver stress

Contrary to the widespread belief that most elderly persons are institutionalized, 95 percent of people over age 65 live at home, and many are cared for, to some extent, by a relative. It has only recently been recognized that the family caregiver is at risk for increased physical and mental morbidity because of this often stressful task. If the situation is too stressful, elder abuse may result. Family physicians are in a good position to identify caregiver stress, recognize the danger signs of elder abuse, provide support, education and advice, and intervene when necessary. Primary care providers should routinely ask about caregiving responsibilities when obtaining the medical history of any patient over age 45.     

Factors affecting burden of family caregivers of community-dwelling ambulatory elders with dementia in Korea

The purpose of the study was to test a staged causal model as a theoretical base to explain the burden of family caregivers of community-dwelling self-ambulatory persons with dementia (PWDs) in Korea. The model contained three stages including antecedents (Stage 1), behavior (Stage 2), and outcome (Stage 3). The antecedents were variables of the PWDs (e.g., cognitive impairment and activities of daily living [ADL] dependency of the PWDs) and caregiver variables (e.g., age, gender of caregiver, and the relationship of caregiver to PWD). Stage 2 focused on wandering behavior. In Stage 3, the outcome variable was caregiver burden. A total of 83 noninstitutionalized, community-dwelling elders with dementia and their family caregivers participated. The instruments used in this study were the Korean version of Mini Mental State Examination, K-PADL (Korean-Physical Activities of Daily Living), Korean-Revised Algase Wandering Scale-Community Version, and K-CWOB (Caregiver Worry, Overload, and Role Captivity Scale-Korean) Korean versions of standardized Western instruments. Results indicate that cognitive impairment and ADL dependency had an indirect influence on caregiver burden through wandering behavior. In addition, caregiver age had a direct impact on caregiver burden. The findings of this study suggest that further refinement of the underlying model is warranted.     

Relationships between income, subjective health and caregiver burden in caregivers of people with dementia in group living care: a cross-sectional community-based study

BACKGROUND: Family caregivers of relatives with dementia report higher level of psychological distress than other caregivers and report their self-related health as poorer than that of comparison groups. AIMS AND OBJECTIVES: The purpose of the study was to examine characteristics of family caregivers and to assess whether income, subjective health, age and relationship were associated with the burden of care they experienced. SETTING: Group living units in southern Sweden. PARTICIPANTS: Fifty caregivers who served as informal caregivers of relatives with dementia in group living care. DESIGN: Interviews regarding economic and social conditions and well-evaluated scales for health and caregiver burden (CB) were used. RESULTS: The majority of the family caregivers were adult children, and twice as many were female than were males. The investigation showed that total burden, strain and disappointment, adjusted for health and age, were related to income. Disappointment showed a relation to subjective health. The adult children showed a significantly higher degree of total burden, irrespective of age, compared to other family caregivers. Low income was associated with a higher degree of burden among adult children. However, elderly participants experienced less of burden than younger ones. CONCLUSION: Our findings indicate that caregivers with low health profile and low income, especially adult children, are associated with higher CB. RELEVANCE TO CLINICAL PRACTICE: People with coexisting risk factors (low income, low perceived health) are the ones who may benefit most from health-oriented interventions.     

Patterns of burden in wives who care for husbands with dementia.

The purpose of the study described in this article was to examine the longitudinal pattern of subjective burden in a sample of 899 wives caring for husbands with irreversible dementia. Differences in caregiver burden between those caregivers who continued home care and those who placed their relative in institutional care were also tested. For both continuing care and placement cohorts the longitudinal pattern showed increases in burden. However, significantly higher levels of burden were found in the caregivers who placed their husbands in institutional care than in those who continued care in the home. Following placement, the wives experienced a decrease in burden. Clinical and health policy implications of these findings are also addressed for nurses and other health professionals.     

The relationship between caregiver burden and self-care deficits in former rehabilitation patients.

This study examined the relationship between caregiver burden and self-care deficit in former rehabilitation patients. We hypothesized that as self-care deficit increases, so does the level of caregiver burden. We employed Spearman correlational analysis and stepwise multiple regression analyses; the mean caregiver burden score was 25.9 (SD = 17.1), indicating mild to moderate burden. Caregiver burden was significantly correlated with social cognition deficit (r = 0.438, p = .001), communication deficit (r = 0.430, p = .001), and self-care deficit (r = .426, p = .002). Significant predictors of burden were social cognition deficit (beta = .408, p = .0018), self-care deficit (beta = .322, p = .0100), and caregiver age (beta = .369, p = .0312).     

Family caregiver assessment. Essential for effective home health care

Home health care nurses do not routinely assess the health of family caregivers despite their essential contribution to the client's care. In this study, home care nurses collected data on 51 older family caregivers from their caseloads to assess their health. The average age of the caregivers was 75.1 years (SD = 6.09). Most (66.7%) were women and were the home health client's spouse (82.4%). These individuals had been caregivers for up to 20 years, and reported spending an average of 13.3 hours per day in this role (SD = 9.15). Approximately half (n = 25) of the caregivers reported poor or fair health, with 33.3% (17) reporting a decline in their health over the previous 6 months. Unmet health needs included the need for blood pressure monitoring, mammograms, PAP smears, and prostate examinations. Referrals to other health care providers or community agencies were required by 78.4% of the caregivers, 78.4% required health teaching, and 23.5% required home health services themselves. Those requiring home health care were more likely to be on more medications and classify their health as fair or poor. These findings confirm those of a pilot study conducted on 51 other family caregivers. Nurses serving the geriatric population need to conduct systematic family caregiver assessments to identify caregiver health needs that could impair their caregiving ability. In particular, for home health care to be effective, nurses must conduct caregiver assessments.