Caring for a demented elderly person — burden and burnout among caregiving relatives

Fifty-two family caregivers for demented elderly people were investigated for burden and burnout experiences. A structured burden questionnaire and the Burnout Measure were used. Burnout is described in relation to the caregiver's gender, age, family relationship and the demented person's living place. Older wives and daughters-in-law also risked developing burnout. Regression analysis showed that limitation in social life, poor health and a lack of positive outlook on caring were the most important independent variables explaining variance in burnout among caregivers having their demented elderly person living at home and those having them in an institution.     

Health-promoting behavior and quality of life among caregivers and non-caregivers in Taiwan: a comparative study

Title.  Health-promoting behavior and quality of life among caregivers and noncaregiversin Taiwan: a comparative study.
Aim.  This paper is a report of a study conducted to compare middle-aged female family caregivers and non-caregivers in terms of: (a) differences in quality of life and health-promoting lifestyle behaviors; and (b) the relationship between health-promoting lifestyle behaviors and quality of life.
Background.  Caregiving for older relatives is a stressful responsibility that detracts from the quality of life of female caregivers and imposes barriers to practising healthy behaviors. Recent studies on caregiving responsibilities have been primarily conducted in Western cultural contexts, with few studies of Chinese groups.
Method.  This cross-sectional, comparative study included a convenience sample of 39 female caregivers and 98 non-caregivers recruited in southern Taiwan in 2007. Data were collected using the World Health Organization Quality of Life Instrument-BREF Taiwanese version and Health Promotion Lifestyle Profile II.
Results.  The majority of caregivers reported a low level of caregiving input with family support. They also reported a statistically significantly higher proportion of health-promoting behaviors than non-caregivers, although quality of life did not differ between the two groups. Practising healthy behaviors may more strongly influence quality of life in caregivers than in non-caregivers.
Conclusion.  Policymakers should consider direct family support and uphold the value of family cohesion in order to maintain healthy behaviors and a high quality of life in family caregivers. Further studies with larger and more comparably-sized participant groups are recommended to investigate the interactions between levels of care, family support, caregiving consequences, health-promoting behaviors and the caregivers' quality of life.     

Family carers of ICU survivors: a survey of the burden they experience

Intensive care unit (ICU) survivors may experience deterioration in their quality of life for months following their return home, with families assuming a caregiving role. The aim of this study was to measure the burden associated with caring for a family member who had been critically ill. The study also sought to describe the relationship between three factors (filial obligation, social support, self-efficacy) and caregiver burden. Seventy-one family carers, 51 females (72%) and 20 (28%) males of long-term intensive care patients completed a mailed survey, after signing an informed consent form. Although the vast majority of the caregivers were providing substantial number of hours of care each week, they scored lower than the midpoint on all caregiver burden inventory subscales. Filial obligation was found to be positively associated with caregiver burden; however, there was no association between social support, self-efficacy and caregiver burden. Male caregivers experienced significantly more burden than female caregivers. The findings suggest that an understanding of the factors that impact on caregiver burden of families of ICU survivors is only beginning to emerge.     

The association between caregiving satisfaction, difficulties and coping among older family caregivers

Aims and objectives. The aim was to study the association between gender, extent and content of care, satisfaction, coping and difficulties in the caregiving situation among older (75+) caregivers and to identify clusters of caregivers. The aim was also to explore psychometrically two instruments assessing satisfaction and difficulties in family caregivers. Background. Caregiving is a complicated phenomenon. Much of the research has focused on negative aspects, such as the burden, stress and emotional strain. Caregiving is known to affect health negatively for the caregivers. Little is known about satisfaction and motivation in voluntary work, such as informal caregiving, especially among older persons. Design and methods. Cross‐sectional. The sample for this study consisted of 171 informal caregivers aged 75 and over, identified from an age‐stratified sample in a postal survey among older people in the southern part of Sweden. Results. Male caregivers proved to be more satisfied than female caregivers; caregiving had seemingly widened their horizon and had helped them to grow as persons. Based on satisfaction scores, those satisfied had a higher proportion of male caregivers and a significantly higher amount of caregiving hours per week. They used other coping strategies than the respondents in the other cluster, i.e. less satisfied in using more problem‐solving strategies. Conclusions. The instruments tested were appropriate for work in clinical and research settings, although the internal dropout indicates that a shorter version would be more useful. Those who found satisfaction in care used more problem‐focused coping strategies and were more often men than women. From a salutogenic point of view, this may give important knowledge about factors that can promote health. The findings indicate that women deserve extra attention as informal caregivers as they did not find caregiving as rewarding as the men did. This may in turn make them less protected against the negative consequences of caregiving. Relevance to clinical practice. Reinforcing the health‐promoting qualities in caregivers who are not feeling well, with women as a particularly vulnerable group, may restrict unnecessary suffering for both the caregiver and the person cared for.     

居家痴呆病人非雇佣女性照料者照料感受的质性研究

目的深入了解居家痴呆病人非雇佣关系女性照料者的正面和负面照料感受。方法运用质性研究中现象学研究方法,对9名居家痴呆病人非雇佣女性照料者进行深入访谈,并运用类属分析法进行资料的整理分析。结果提升出3个主题,主题1身心疲惫:沉重的心理负担和每况愈下的身体状况;主题2照顾的动力:对病人的深厚感情是照料动力的主要来源,感受到的正性情感为照料者增添动力;主题3主动疏解。结论非雇佣女性照料者的身心健康状况较差,应在身心两方面给予她们有效的支持,增加其照料过程中获得的正性情感,并建立痴呆病人专门的照料机构,减轻照料者负担。     

Exploring the roles of men. Caring for demented relatives

1. Men are under-represented among family members providing care to a demented relative. 2. Few differences were noted among the male caregivers: men with demented relatives at home spent more time daily on caregiving tasks although both groups of men tended to rely on others for the "hands-on" care needed; institutionalized demented relatives were rated as being more impaired than those at home; and men caring for relatives at home seemed determined to continue in their role. 3. It is possible that men find it more difficult to become caregivers because of lack of support from other family members, the impairment of the relative and the need for direct care, and men's lack of involvement in providing direct care. 4. Nurses involved in dementia care should offer instructional sessions aimed at men, provide assistance in working through emotional problems, and encourage their participation in future research on the male caregiving experience.     

Loneliness as a predictor of quality of life among older caregivers

AIM: This paper reports a study investigating quality of life in relation to loneliness, caregiving, social network, gender, age and economic status among caregiving men and women in a population-based sample aged 75 years or older. BACKGROUND: Because of demographic changes, in the future more care for older people will be given by informal caregivers who are themselves older. Being old and caring for another older person may affect various aspects of life, such as physical and emotional health and decreased time for respite, which may affect social life and quality of life. METHOD: A postal questionnaire including the Short Form Health Survey was used. The sample consisted of 4278 people, aged 75 years and over, living in Sweden. Of these, 783 (18%) were caregivers. FINDINGS: Caregivers had a larger social network and reported feelings of loneliness less often than non-caregivers. Forty per cent of caregivers helped every day. There were gender differences in experiences of loneliness during the last year, with the frequency of intense feelings of loneliness being higher among women. Loneliness and a small or non-existent network were significantly associated with low quality of life among caregivers, as well as in the total sample. The results showed significant association between loneliness, weak social network and low mental quality of life. CONCLUSIONS: The fact that loneliness was the most important factor predicting low quality of life among caregivers, as well as older people in general, indicates that it is crucial in the care of older people. From a nursing perspective, the findings indicate the advantage of helping older people to keep up and develop their social networks. Nursing care should involve steps to maintain the social network before an older person becomes too weak, since decreased health status makes social contacts more difficult.     

Life satisfaction among informal caregivers in comparison with non-caregivers

Being a caregiver with responsibility for someone with reduced health compared with not being a caregiver may mean different views of life satisfaction. Knowledge of what leads to reduced life satisfaction in caregivers may be helpful in interventions. Informal caregivers gainfully employed or not, aged 50-89 years, were studied with regard to life satisfaction depending on the extent of caregiving to identify types of social support of value for caregivers. A cross-sectional study was conducted including a sample of 151 informal caregivers with a high caregiving extent, 392 caregivers with a lower caregiving extent and 1258 non-caregivers. The sample was randomly selected to correspond with older Swedes as a whole aged 50-89 years. A questionnaire containing a modified form of Older Americans' Resources Schedule (OARS) and Life Satisfaction Index Z (LSIZ) was used; 19.6% helped someone with activities of daily living and of these 27% stated that they did so frequently. Frequent caregiving implied significantly higher age, being more often married and retired, than less frequent caregivers and non-caregivers. Frequent caregivers also performed personal activities of daily living (PADL) to a higher extent than less frequent caregivers and had significantly lower LSIZ (mean 14.8) than less frequent caregivers (mean 17.6) and non-caregivers (mean 17.7). No significant differences were found between less frequent caregivers and non-caregivers in LSIZ. One-fourth had support from others, the commonest type being able to converse with a next of kin, and help and advice from professionals. Lower life satisfaction was associated with not being employed, low social resources, not refreshed after a night's sleep, overall poor health and frequent caregiving in the entire sample. High caregiving extent was associated with lower life satisfaction. The most important factors explaining lower life satisfaction among frequent caregivers were having low social resources and having poor health. Economic compensation or payment was the support most desired.     

Patterns of elderly spousal caregiving in dementia care: an observational study

AIM: The aim of this study was to describe which caring activities eight spouses performed when caring for a partner with dementia, and in what way these activities were carried out. BACKGROUND: Family caregivers are recognized as being the primary source of care for the community's older people. The largest group is comprised of spouses, with wives as the predominant caregivers. This informal care seems to be more or less invisible and performed in silence within the family. Despite the wealth of studies, the essence of family caregiving is not well understood. METHODS: Data collection was conducted by observing the dyads in their homes. A qualitative approach inspired by grounded theory was chosen to discover qualities and describe patterns of spousal caregiving in dementia care. RESULTS: The analysis yielded four broad themes, which included nine categories. Findings from the study shed some light on the invisible aspects besides the traditional hands-on caregiving. CONCLUSION: The elderly carers were engaged in demanding and time-consuming care ranging from supervision to heavy physical responsibility. They were caring for as well as about their partners. The study also showed that spouses were successful in managing their situation in different ways. The results reported in this article are unique as they come from direct observations in family home settings where a spouse cared for a partner with dementia. Knowledge about family caregiving is valuable for nurses as there is an emphasis on collaboration between family caregivers and professionals.     

Quality of life among older grandparent caregivers: a pilot study

Title.  Quality of life among older grandparent caregivers: a pilot study.
Aim.  This article is a report of a study conducted to compare quality of life and levels of depressive symptoms among older grandparent caregivers and non-caregivers in Taiwan.
Background.  Little is known about grandparenthood in modern Chinese society. In particular, no research has been conducted to explore the consequences among Chinese grandparent caregivers of caring for grandchildren.
Methods.  A cross-sectional comparative pilot study was conducted in 2007 in a city in Taiwan. A convenience sample of 45 grandparent caregivers and 48 grandparent non-caregivers was interviewed using a questionnaire including Taiwanese versions of the Short Form-36 Health Survey and Geriatric Depression Scale.
Results.  No statistically significant differences in measures of quality of life or depression were found between the caregiver and non-caregiver groups. Physical health was poorer than mental health in both caregiver and non-caregiver groups. Among caregivers, 55·6% reported psychological distress, even though 86·7% had support from family members.
Conclusion.  Nurses in community settings should be aware of the physical burdens on older grandparent caregivers and offer advice to protect their health. Further studies with larger sample sizes are required to generate more complete results on the consequences of caregiving by grandparents. The buffering role of family support on caregiving stress should also be further studied using validated measurement tools.     

照顾者与住院老年患者跌倒相关性的研究

目的分析照顾者与老年患者跌倒发生率的相关性,为制定护理预防措施及相关宣教内容提供科学依据。方法抽取北京市10个城区的10所医院274名老年人进行问卷调查。结果老年患者在有人照顾的情况下跌倒发生率为31.97%,①亲属照顾跌倒率为67.98%,高于非亲属照顾跌倒率43.75%。②有照顾经历者跌倒率为65.33%,高于无照顾经历者跌倒率50.81%。③经专业培训或非专业培训者跌倒率低于未培训凭经验者跌倒率。结论照顾者的身份、经历、照顾知识来源与住院老年患者跌倒发生率具有相关性,应加强对照顾者护理专业知识的培训和管理,强化其安全意识,最大程度降低住院老年患者跌倒发生率。     

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.     

以增强应对资源为重点的护理干预对减轻脑卒中居家照顾者负荷的影响

目的 检测以增强照顾者应对资源为重点的综合性护理干预对减轻脑卒中患者主要居家照顾者负荷的效果.方法 从上海市某5社区中选择脑卒中患者主要居家照顾者60例,随机分为干预组（30例）和对照组（30例）.对照组接受常规社区护理,干预组在接受常规社区护理的同时,给予增强照顾者应对资源为重点的综合性护理干预,为期3个月.以BCOS量表、照顾知识问卷、一般自我效能量表、社会支持量表作为主要评价工具,于干预后、干预后3个月分别进行干预效果的评价.结果 干预后干预组照顾者总体负荷明显降低,尤以身体负荷和社会负荷的降低明显.重复测量方差分析,干预组BCOS总分及身体负荷和社会负荷2个维度的得分均高于对照组（P＜0.01;＜0.05,P＜0.01）.多元方差分析,干预后、干预后3个月2个时间点,干预组照顾者负荷总分,身体负荷得分、社会负荷得分均高于对照组（P＜0.05）;干预组心理负荷得分于干预后3个月高于对照组（P＜0.01）.照顾者应对资源增强.重复测量方差分析和多元方差分析结果显示,干预组照顾知识总分以及疾病知识、护理知识和康复知识3个维度的得分均高于对照组（P＜0.01;P＜0.01;P＜0.05;P＜0.01）;干预组社会支持水平高于对照组（P＜0.01）.结论 以增强照顾者应对资源为重点的综合性护理干预方案,明显地减轻了脑卒中患者主要居家照顾者的负荷,适用于在减轻脑卒中患者主要居家照顾者负荷的干预中推行.     

Who Cares for the Caregiver?

Forty-six demented elderly and their caregivers previously studied with respect to strain on caregivers; were studied one year after the initial assessment with respect to institutionalization. Patients admitted to a nursing home, showed more pronounced mental and behavioural disturbances. Cognitive functions, gender, marital status and living conditions did not differ between the two groups. The caregivers of institutionalized demented were older, they expressed more feelings of anger and despair and more often requested the care receiver transferred to a nursing home.     

The association of collaboration between family caregivers and nurses in the hospital and their preparedness for caregiving at home

Family caregivers of an older person who was recently hospitalized often feel unprepared for their new or expanded tasks. Quality and continuity of care for older people is expected to improve when nurses collaborate with family caregivers as partners in care. The aim of this study was to explore the unique contribution of collaboration between family caregivers of older patients and hospital nurses as a possible predictor for preparedness of caregiving after hospital discharge. With a cross sectional design, a postal survey was sent to 777 family caregivers of home-dwelling hospitalized patients (≥70 years). Regression analyses were used to test the association between collaboration and preparedness for caregiving. In total, 506 (68%) family caregivers responded of whom 281 (38%) were eligible. Their mean (SD) age was 65 (13) and 71% were female. Family caregivers’ level of collaboration with nurses was significantly associated with their preparedness for caregiving.     

Psychosocial intervention for family caregivers of people with dementia reduces caregiver's burden: development and effect after 6 and 12 months

A number of different intervention programmes have been described in the literature for caregivers of people with dementia, but the nature of intervention has varied widely. The aim of the present study was to evaluate the efficacy of psychosocial intervention on family caregiver's level of burden and satisfaction, and possible influence of the caregiver's relationship and health and the patient's severity of the disease on the effects of intervention. All persons, 70 years and older, from two districts of a municipality (2721 individuals) who were in receipt of any form of social services were invited to participate in a screening of cognitive decline, and 1656 home visits were made. Those with symptoms of cognitive decline, and having a family caregiver, were invited for a further medical examination. Data were analysed from 308 family caregivers: 153 caregivers who underwent intervention and 155 control caregivers who did not. Repeated measures were carried out 6 and 12 months later. Outcomes were measured using instruments that had been tested for reliability and validity, and all patients were diagnosed according to DSM-IV dementia criteria. Caregivers who underwent the psychosocial intervention (5-week programme and 3-month conversation group) reported significantly lower strain and disappointment after 6 months, and this trend remained after 12 months. Satisfaction, measured in terms of purpose, increased in the intervention group and decreased in the control group. The best effect on caregivers in the intervention group was found early in the progression of dementia and in caregivers with impaired health. These findings emphasize the importance of identifying family caregivers early in the caring process to optimize well-being. This study demonstrates that psychosocial intervention with a clearly defined aim that includes giving information and having a conversation group have significant, positive effects on burden and satisfaction for caregivers of people with dementia.