Feelings of burden and health-related quality of life among family caregivers looking after the impaired elderly
Dr Hiroko Miura, Department of Speech Therapy, Faculty of Health Science, 1714-1 Yoshino-cho, Nobeoka-shi, Miyazaki 882-8508, Japan. Email: email@example.com
Abstract The aim of the present study was to examine the relationship between feelings of burden and health-related quality of life (HRQOL) among family caregivers looking after the impaired elderly residing in a community located in southern Japan. Subjects were 85 pairs comprising elderly individuals requiring care and their respective family caregivers. Questionnaire items for the family caregivers related to demographic variables, caregivers’ burden, HRQOL, use of public services, hours spent caregiving, duration of caregiving, and satisfaction with verbal communication with family. Questionnaire items for the elderly recipients of care concerned demographic variables, activities of daily living, and cognitive status. According to bivariate analysis, caregivers’ burden was significantly related to cognitive status, hours spent caregiving, and each HRQOL subscore except physical function. From multiple regression analysis, subscore of HRQOL with respect to mental health and satisfaction with verbal communication were extracted as influential factors. Final regression coefficient was 0.72 (P < 0.01) and coefficient of determination was 0.53. These results suggest that satisfactory mental health status plays an important role in limiting family caregivers’ burden.
In Japan, a rapid increase in the elderly population has resulted in an unprecedented rise in the number of elderly requiring social assistance. As a result of the new public long-term care insurance scheme, many impaired elderly individuals with long-term and complex health problems are being cared for by family caregivers.1
Some investigators have reported that the mental or emotional strain associated with caregiver status is an independent risk factor for mortality among elderly spousal caregivers.2 Furthermore, several studies have documented a strong relationship between caregiving and elevated levels of depressive symptoms among caregivers, including high rates of clinical depression and anxiety.3,4 Thus, in order to maintain the health status of family caregivers, it is very important to elucidate the physical and/or mental influences on the family caregiver that occur during long-term caregiving.
Studies on perceived caregivers’ burden have identified certain factors to be associated with feelings of burden.5–7 However, few studies have examined the direct association between perceived burden and health-related quality of life (HRQOL) including physical and mental health among family caregivers. The present study therefore aimed to analyze the relationship between feelings of burden and HRQOL among family caregivers using various scales.
The survey was conducted from October 2003 to January 2004 in Nobeoka City, Miyazaki Prefecture, southern Japan, using a self-administered questionnaire. As the first step, we randomly selected 115 impaired elderly individuals (36 men, 79 women) who were above 65 years of age, resided in the community with their family, and received a public welfare service under the national long-term care insurance system. In the second step, all 115 impaired elderly and their family principal caregivers were contacted by mail to explain the objectives of the present study. Informed consent was obtained from 85 pairs (response rate = 73.9%). Differences between participants and non-participants of the study, in terms of age, sex, and physical or mental status, were not statistically significant. All family caregivers who decided not to participate in the present study cited lack of time in their schedules as their reason. This study was endorsed by the ethical committee of Kyushu University of Health and Welfare.
Family caregivers were asked to complete a questionnaire regarding the following areas related to perceived burden and caregiving: (i) demographic variables; (ii) caregivers’ burden; (iii) HRQOL; (iv) use of public services; (v) hours spent caregiving per day; (vi) duration of caregiving; and (vii) satisfaction with verbal communication with family. Caregivers’ burden was evaluated using the short version of Japanese version of the Zarit Caregiver Burden Interview (J-ZBI_8), which has been demonstrated to have similar validity to the full version, the J-ZBI.8,9 HRQOL among family caregivers was evaluated using the Japanese version of the short-form 36 health survey questionnaire (SF-36).10,11 The SF-36 is widely used to assess QOL including health status and comprises eight health subscales: physical functioning (PF), role physical (RP), bodily pain (BP), general health (GH), vitality (VT), social functioning (SF), role emotional (RE), and mental health (MH). Regarding use of welfare services, respondents were asked about their use of the following six types of available services within the previous month: home-help, home nurse visits, respite care, meals on wheels, bathing service, and residential day care. Levels of satisfaction with verbal communication with family members were measured by the question: ‘Are you satisfied with your ability to communicate with the family verbally?’ in accordance with our previous survey.12 Subjects categorized themselves as either ‘satisfied’ or ‘dissatisfied’ in this respect.
For the impaired elderly subjects, questionnaire items were grouped into the following aspects: (i) demographic variables; (ii) activities of daily living (ADL); and (iii) cognitive status. Impairment and disability were evaluated using the ADL-20.13 This scale consists of 20 items from four major categories of basic activities of daily living (ADL): (i) mobility, five items; (ii) self-care, six items (iii) instrumental ADL (IADL), seven items, and (iv) communication ADL (CADL), two items. It has been reported that ADL-20 is useful as a comprehensive measure of ADL in the elderly with a variety of handicaps. Cognitive impairment was rated using the revised Hasegawa Dementia Rating scale (HDS-R), a Japanese screening test for dementia that measures overall cognitive function, including verbal orientation and memory, with scores ranging from 0 to 30. The HDS-R is equivalent to the Mini-Mental State Examination and has been widely used in Japan.14
Bivariate analyses were performed using Spearman's rank correlation coefficients, unpaired t-tests, Welch test, and anova. Then, a stepwise multiple regression analysis was performed with the J-ZBI_8 score treated as the dependent variable for each independent variable (F = 3.0) in order to detect the factors with the largest influence on burden among family caregivers. All statistical analyses were performed using SPSS version 12.0 (Chicago, IL, USA).
Tables 1 and 2 show the characteristics of the impaired elderly and their family caregivers. For the impaired elderly, mean age was 80.81 ± 7.62 and mean HDS-R score was 14.54, indicating that most of the elderly participants suffered from cognitive impairment. For caregivers, mean age was 64.33 ± 12.92. Average number of welfare services used was 2.15, with all caregivers reporting to having used at least one service. Only around 55% of caregivers reported being satisfied with verbal communication with the family.
Table 1. . Characteristics of impaired elderly individuals and their caregivers (n = 85)
| ADL-20 score||38.17||16.55|
| HDS-R score||14.54|| 8.24|
| J-ZBI_8 score||12.85|| 7.23|
| Hours spent caregiving (h/day)|| 6.24|| 5.75|
| Duration of caregiving (years)|| 5.69|| 6.22|
| Short-form 36 health survey questionnaire|
| Physical functioning||70.35||29.48|
| Role physical||58.54||43.52|
| Role emotional||56.91||45.49|
| Social functioning||71.65||22.88|
| Mental health||60.80||21.26|
| Bodily pain||54.12||22.65|
| General health||50.15||20.93|
| No. public services used|| 2.15|| 1.20|
Table 2. . Characteristics of the impaired elderly and caregivers (n = 85)
| Relationship to the elderly person|
| Verbal communication|
Table 3 shows correlation coefficients between J-ZBI_8 score and certain variables including ADL capability of the impaired elderly, and caregiving-related factors and SF-36 subscores among the family caregivers. Caregivers’ burden was correlated with HDS-R score of the impaired elderly (P < 0.05) and with the following SF-36 subscores: RP (P < 0.05), RE (P < 0.01), SF (P < 0.01), MH (P < 0.01), BP (P < 0.05), VT (P < 0.01), and GH (P < 0.01). However, J-ZBI_8 score demonstrated no significant correlation to age of the impaired elderly, age of their caregivers, hours spent caregiving, duration of caregiving, PF subscore of SF-36, or the number of welfare services used.
Table 3. . Spearman rank correlation coefficients between caregiver burden (J-ZBI_8 score) and various independent variables
| Age|| 0.08||0.44|
| ADL-20 score||−0.05||0.67|
| HDS-R score||−0.29||0.01|
| Hours spent caregiving (h/day)|| 0.23||0.05|
| Duration of caregiving (years)||−0.09||0.41|
| Physical functioning|| 0.06||0.56|
| Role physical||−0.21||0.04|
| Role emotional||−0.41||0.00|
| Social functioning||−0.53||0.00|
| Mental health||−0.56||0.00|
| Bodily pain||−0.24||0.02|
| General health||−0.36||0.00|
| No. public services used|| 0.17||0.09|
Table 4 shows the relationship between J-ZBI_8 and certain variables including gender of the impaired elderly individual and their caregiver, family relationship between the pair, and caregivers’ satisfaction with verbal communication. Satisfaction with verbal communication was significantly related to caregivers’ burden (P < 0.01). However, no significant relationship was demonstrated between J-ZBI_8 score and gender of the impaired elderly person or caregiver, or family relationship between the pair.
Table 4. . Relationship between caregivers’ burden evaluated by J-ZBI_8 and the following variables: gender of impaired elderly person and their caregiver, caregiver's relationship to the impaired elderly, and satisfaction with verbal communication
| Male (n = 27)||12.04 ± 8.36|| 0.33†|
| Female (n = 58)||10.22 ± 6.73|| |
| Male (n = 19)|| 9.52 ± 5.84|| 0.48‡|
| Female (n = 66)||10.79 ± 7.61|| |
| Relationship to the elderly person|
| Spouse (n = 25)||10.58 ± 8.16|| 0.120§|
| Child (n = 29)||11.45 ± 6.09|| |
| Daughter-in-law (n = 20)|| 8.33 ± 5.59|| |
| Others (n = 11)||13.90 ± 8.90|| |
| Verbal communication|
| Satisfied (n = 47)||13.66 ± 7.85||<0.01†|
| Dissatisfied (n = 38)|| 8.37 ± 5.73|| |
Table 5 shows the results of a stepwise multiple regression analysis conducted to find the most influential factor on caregivers’ burden. MH subscore of SF-36 was extracted in the first step, and satisfaction with verbal communication was extracted in the second step. Final regression coefficient was 0.72 (P < 0.01), and coefficient of determination was 0.53.
Table 5. . Factors related to caregivers’ burden on stepwise multiple regression analysis
|Self-rated verbal communication||−0.03||−2.89||<0.01|
These results indicated a close association between feelings of burden and HRQOL in family caregivers looking after the impaired elderly. In particular, the results of multiple regression analysis showed that quality of life associated with mental health was significantly related to feelings of burden in caregivers. Moreover, the results of bivariate analysis and multiple regression analysis indicated that physical health of caregivers was weakly associated with caregivers’ burden. Furthermore, satisfaction with verbal communication with the family was also related to feelings of burden among the caregivers. These two factors accounted for nearly 53% of the variance of J-ZBI_8 scores that indicated caregiver burden. In our previous study conducted among healthy elderly individuals, a close relationship was detected among satisfaction with verbal communication, general health status, and social activity.12 Hence, satisfactory verbal communication plays an important role in maintaining relationships with other family members, and reduced opportunities for verbal communication sometimes lead to increased feelings of burden in family caregivers. In addition, previous studies have indicated a stronger relationship between caregiving and depression, stress, and social interaction than between caregiving and physical health outcome.7,15 Taken together with the results of the present study, these findings suggest that caregivers’ burden has little significant association to physical health.
Some studies have reported that the caregivers of dementia patients can exhibit severe psychological problems,16,17 a finding that is supported by the present results. On examining the relationship between caregiver burden and attributes of the impaired elderly including ADL and cognitive function, bivariate analysis indicated that cognitive status of the impaired elderly as evaluated by HDS-R was significantly related to family caregiver burden. However, multiple stepwise regression analysis indicated no significant relationship between these two variables. Previous studies have also detected no significant relationship between caregiver burden and cognitive status.4,5
Type of disease (such as stroke and Alzheimer's disease) has been found to affect the association between elderly individuals’ ADL and their caregivers’ burden.18,19 The present results indicated no significant relationship between ADL of the impaired elderly and caregivers’ burden. However, subjects in the present study had a variety of diseases, and it was therefore difficult to control for type and severity of illness. From these findings, it is therefore impossible to elucidate the relationship between ADL of the impaired elderly and the burden experienced by family caregivers.
Neither the family relationship between the elderly person and the caregiver nor caregiver age had a significant influence on caregiver burden. While bivariate analysis indicated that caregivers’ gender was significantly related to the burden, multiple regression analysis did not show such a significant relationship. It has previously been reported that caring for a first-degree relative can strongly affect burden and stress among family caregivers.4,20,21 However, this was not supported by the present findings. Our previous studies have demonstrated that the notion of caregiving as a family duty strongly remains in northern rural areas of Japan.4,5 However, concepts of caregiving differ greatly according to local customs and in the future it will be necessary to repeat this survey in a variety of regions.
The present study has several methodological limitations. First, sample size was relatively small and little detailed information regarding disease history was gathered. Nevertheless, the present results suggest that family caregivers experiencing high burden have significantly lower mental health and satisfaction with verbal communication. This might be attributable to the objective demands of caregiving causing symptoms of depression and decreasing both the energy available for engaging in verbal communication and the opportunities to do so. Second, as the study design was cross-sectional, we cannot rule out a bidirectional relationship between family caregivers’ burden and mental health and satisfaction with verbal communication. While the present findings provide important basic information, longitudinal studies are needed to obtain stronger scientific evidence, and to evaluate causality between family caregivers’ burden and QOL in the future.
Maintaining QOL of family caregivers is essential in order to preserve the quality and sustainability of home care. A decline of mental health and satisfaction with verbal communication is likely to result in increased caregivers’ burden. Conversely, improving these factors would lead to a reduction in caregiver burden. In addition to the public service system, informal services also play an important role in improving mental health and satisfaction with verbal communication among caregivers. We advocate that, in future, family caregivers receive counseling by trained professionals.
We would like to thank the participants in the present study, which was in part supported by a grant for Comprehensive Research on Aging and Health provided by the Ministry of Health and Welfare, Japan.