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Development of a burden scale for caregivers of dementia patients
Asian Journal of Psychiatry 8 (2014) 22–25
Contents lists available at ScienceDirect
Asian Journal of Psychiatry journal homepage: www.elsevier.com/locate/ajp
Development of a burden scale for caregivers of dementia patients Unchulee Taemeeyapradit a, Dussadee Udomittipong a, Sawitri Assanangkornchai b,* a b
Songkhlarajanakarindra Psychiatric Hospital, Muang District, Songkhla, Thailand Epidemiology Unit, Faculty of Medicine, Prince of Songkla University, Hat Yai, Songkhla, Thailand
A R T I C L E I N F O
A B S T R A C T
Article history: Received 27 March 2013 Received in revised form 1 September 2013 Accepted 22 September 2013
Objective: To develop a scale to measure the burden of care for caregivers of patients with dementia and explore its factor structure. Methods: The initial draft of the Thai dementia patients’ caregiver burden (Thai-DCAB) scale was developed based on literature review, in-depth interviews and expert opinions. The drafted scale was administered to 203 caregivers of dementia patients treated at two large public hospitals in southern Thailand. An exploratory factor analysis using maximum likelihood extraction with varimax rotation was conducted. The reliability of the scale was assessed using Cronbach’s alpha. Results: The Thai-DCAB scale consisted of 18 questions. Three factors were obtained, covering psychological, physical and financial burdens of the caregivers in taking care of dementia patients. These three factors accounted for 67% of the variance. The Cronbach’s alpha coefficient was 0.95. Conclusion: The Thai-DCAB scale has high internal consistency and captures key theoretical constructs of the perceived burden among caregivers of patients with chronic and deteriorating dementia and in accordance with the social and cultural contexts and the way of life of the Thai people. ß 2013 Elsevier B.V. All rights reserved.
Keywords: Burden scale Dementia Caregiver Factor structure
1. Introduction The change in the age structure of the population in the world has resulted in an increasing proportion of elderly people. Asia is one of the regions where many countries will face population aging in the near future. By 2050 it is expected that in many countries in the region more than 40% of the population cohort will be over 60 years of age and the median age will approach 40 years (United Nations, 2002). Asia had more than half (55%) of the world’s older people in 2012 (United Nations, 2012). Population aging influences family composition and living arrangements, and the need for health-care services. The health of older persons typically deteriorates with increasing age, inducing greater demand for long-term care as the number of older people increases. Dementia is one of the consequences of a rapid increase in the aging population worldwide. It is estimated that nearly 35.6 million people worldwide live with dementia, with the number being projected to almost double by 2030 and more than triple by 2050. About 58% of dementia patients live in low- and
* Corresponding author at: Epidemiology Unit, Faculty of Medicine, Prince of Songkla University, 15 Kanchanavanich Road, Hat Yai, Songkhla, 90112 Thailand. Tel.: +66 74 451165; fax: +66 74 429754. E-mail addresses: [email protected] (U. Taemeeyapradit), [email protected] (D. Udomittipong), [email protected] (S. Assanangkornchai). 1876-2018/$ – see front matter ß 2013 Elsevier B.V. All rights reserved. http://dx.doi.org/10.1016/j.ajp.2013.09.011
middle-income countries and it is likely to rise to more than 70% by 2050 (World Health Organization and Alzheimer’s Disease International, 2012). The population of Thailand is progressively aging. The proportion of older persons will increase to 14% in 2015, 20% in 2025 and nearly 30% by 2050 (United Nations Population Fund, 2006). In parallel, the prevalence of illnesses and diseases among the elderly will increase, including the prevalence of dementia, which increases with age. Dementia is devastating not only for the people who have it, but also for their caregivers and families. Aside from impairment of memory, thinking process, and cognitive function, 78% of patients with dementia also have co-existing behavioral, mental and emotional symptoms (Seitz et al., 2010). This prevalence is especially high among those with Alzheimer’s disease (Burns and Iliffe, 2009). Several studies have found that caregivers of dementia patients are faced with a high burden because of its extremely high cost of care and high need of dependency (Varela et al., 2011; Nunnemann et al., 2012; Wang, 2012). These can affect the interaction and relationship between family members, resulting in an increasing risk of mental disorders, such as depression, anxiety, sleep problems and stress, and a low quality of life among the caretakers (Serrano-Aguilar et al., 2006; Papastavrou et al., 2007, 2011; Varela et al., 2011). Several tools have been developed and used widely for measuring the caregivers’ burden for patients with chronic diseases and dementia such as the Zarit Burden Interview,
U. Taemeeyapradit et al. / Asian Journal of Psychiatry 8 (2014) 22–25
23
Caregiver Self-assessment Questionnaire, Brief Measures of Secondary Role and Intrapsychic Strains (American Psychological Association, 2013; Van Durme et al., 2012). These tools include items pertaining to the effects on the caregivers in term of emotional and mental health, physical health, employment, available personal time, family and social relations, feelings toward the patient, feeling of uncertainty and financial burden. However, these tools were developed based on a western culture. Asian societies differ from western societies mainly regarding the family bond and in the caring for elderly family members. Caring for one’s parents is considered a duty and a way to express one’s filial piety. In western societies, healthcare personnel are usually the main caregivers for the elderly while in Thai society, the family members or relatives play the major role as primary caregivers (Songkhla Rajanagarindra Psychiatric Hospital, 2012). As each country setting has its own unique context, the development of an assessment tool that suits the contexts of the Thai society is necessary. However, a measuring instrument on the burden of care in the Thai language is available only for chronic physical diseases and it was translated from English (Toonsiri and Sansern, 2011). This study thus aimed to develop an instrument – the Thai dementia patients’ caregiver burden (Thai-DCAB) scale to measure the burden of care of dementia patients on their caregivers. Such an instrument could provide clinically useful assessment information for health workers to identify caregivers with a high level of burden and make appropriate plans for the treatment and care of both the patients and their relatives. The current paper reports the development process and structure of this newly developed tool.
pilot test was to check the comprehensibility and wording of the scale, as well as time spent in completing the scale, thus a sample size of 43 caregivers was considered adequate. Some minor modifications of the wording were then made to improve the clarity. The final draft consisted of 20 questions. Each item was rated on a 5-point Likert scale, none, a little, moderate, a lot and greatest. It was hypothesized that a caregiver who took care of a dementia patient with severe behavioral and psychological symptoms would have a higher perceived burden. In order to examine this relationship, the Thai version of the Neuropsychiatric Inventory Questionnaire (NPI-Q-Thai) was administered to 43 caregivers. The NPI-Q-Thai is a questionnaire used to measure the patients’ behavior and psychological symptoms of dementia by asking the caregiver to rate the severity of the patient’s symptoms. It has been validated and used widely in clinical settings in Thailand (Hemrungrojn, 2011). There are 12 items: symptoms of delusion, hallucination, agitation and aggression, depression, anxiety, euphoria, apathy, disinhibition, irritability, aberrant motor behavior, difficulty sleeping, and eating problem.
2. Materials and methods
2.4. Data analysis
2.1. Subjects
Demographic data of caregivers were analyzed using descriptive statistics, i.e. frequency and percentage. Exploratory factor analysis with the maximum likelihood and varimax orthogonal rotation techniques was used to extract factor components. The number of components was retained based on the eigenvalues being greater than 1, an elbow in the graph of the scree-test and also on heuristic and practical grounds (Kaiser, 1974). Internal consistency was calculated for each component and the whole scale using Cronbach’s alpha coefficient. The overall NPI-Q-Thai score was calculated by summing the scores of 12 items and then categorized into tertiles. The relationship between the level of burden assessed by the Thai-DCAB scale and the caregivers’ perception of the severity of the patient’s symptoms was analyzed using ordinal logistic regression.
Caregivers of dementia patients who received treatment at the Songkhla Rajanakarindra Psychiatric Hospital or Surajthanee Regional Hospital during November 2011 to April 2012 were invited to participate in the study. Of 246 patients approached, 203 agreed to participate, giving a response rate of 82.5%. 2.2. Materials To prepare the initial draft of the scale, we reviewed the literature related to burdens of caregivers of patients with chronic diseases and dementia. In-depth interviews were then performed with nine caregivers of dementia patients and three mental health personnel who specialized in dementia care. Six sub-themes were derived from the literature review and in-depth interviews, including caregivers’ physical, mental and emotional health; availability of time for personal, family and social needs; financial burden; ability to provide care; accessibility to healthcare and social resources; and perception of participation of family members in terms of care-giving and their financial contribution. Under these sub-themes, an initial list of 20 items was initially developed. The first draft of the scale was reviewed by a panel of experts, including a psychiatrist, a neurologist, three psychiatric nurses, a clinical psychologist, an assessment specialist, a social worker, and three relatives or caregivers of dementia patients with five or more years of experience in providing care. The draft was then modified and reviewed again by four experts experienced in working with elderly patients with chronic medical and psychiatric conditions and/or dementia, including a clinical psychologist, a geriatric nurse, a psychiatric nurse and an assessment specialist, for its wording and face validity. The scale was then pilot tested on 43 caregivers of patients with dementia at the study psychiatric hospital. The purpose of this
2.3. Procedure Institutional ethical approval was obtained from Songkhla Rajanakarindra Psychiatric Hospital and Surajthanee Regional Hospital. All care-givers were fully informed about the purpose of the study and the procedure and gave their consent to participate. A face-to-face, structured interview was performed in privacy by a well trained nurse at the study hospitals.
3. Results 3.1. Sample characteristics Altogether, 203 caregivers participated in the study. Most were female (64.5%), married (67.5%) and Buddhist (67.4%). Their average age was 49.13 years (SD = 10.17 years, range = 29–65). More than one-third had bachelor’s degree education or higher (37.9%), while the rest achieved vocational (15.3%), secondary (24.1%) or primary school education (22.7%). Similar proportions were engaged in a fulltime job as a civil servant or state enterprise employee (27.6%), business owner and vendor (27.1%), or farmer (25.1%). Their average income was 31821 Thai Baht (1060 US dollars) per month. The highest proportion of caregivers was the patients’ children (56%), followed by spouse (33%). The average length of time in caring for the patient was 6.5 years (range = 1–13 years). The average age of dementia patients receiving care was 75.26 years (SD = 7.5 years), with a mean duration of illness being 4.9 years (SD = 3.64). Their average Thai Mini-mental Status
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U. Taemeeyapradit et al. / Asian Journal of Psychiatry 8 (2014) 22–25
Examination (TMSE) score was 14.89 (SD = 4.1), indicating moderate to severe cognitive impairment.
Table 2 Relationship between NPI-Q-Thai and Thai-DCAB scores. Thai-DCAB score
NPI-Q Thai score Mild (1–12)
Moderate (13–24)
Severe (25–36)
Low (0–20) Moderate (21–45) High (46–72)
8 (44.4) 6 (33.3) 4 (22.2)
12 (34.3) 18 (51.4) 5 (14.3)
3 (16.7) 7 (38.9) 8 (44.4)
3.2. Factor structure In the factor analysis of the Thai-DCAB scale, only variables with a factor loading more than 0.5 were selected for each component. However, there were many variables with high factor loading values on more than 1 component, causing the grouping of variables to lack clarity. Factor rotation was performed to help clarify the grouping process and this resulted in three components that could best describe the variation among the items of the scale (Table 1). Due to item cross-loadings between components and a somewhat overlapping meaning, two items were deleted – (1) Caring for the patient has worsened the relationship between you and your family and friends, and (2) You cannot tolerate caring for the patient anymore. The final version then consisted of 18 items in three components with eigenvalues of 5.6, 4.2 and 3.5, accounting for 28%, 21% and 18% (total = 67%) of the total variance, respectively. The first component consisted of nine items (9, 10, 12, 14, 15, 16, 17, and 18), representing the psychological burden and need for supporting resources. The second component consisted of five items (4, 5, 6, 7, 11 and 13), related mostly to physical health and personal time burdens. The third component consisted of four items (1, 2, 3 and 8), associated with financial burden and participation of other family members (Table 1). The internal consistency of items within the same component was high, (0.8766, 0.9039 and 0.9283 for factors 1–3, respectively) and Cronbach’s alpha coefficient for the overall scale was 0.9499. The Thai D-CAB captures key theoretical constructs of the burden of care born by caregivers of patients with chronic diseases reported in international literature, which define burden of care as perceived suffering in terms of emotional and physical health (items 4–6, 10, 11 and 14) social life (item 13) and financial status (items 1 and 3) as a result of caring patient with a chronic disease (Pai and Kapur, 1981; Zarit et al., 1980). 3.3. Relationship of the Thai-DCAB scale with the severity of the patient’s symptoms Table 2 shows the distribution of the Thai-DCAB scores among three levels of NPI-Q-Thai scores. Less than half of the caregivers
who perceived the patient’s symptoms as ‘‘mild’’ on the NPI-Q-Thai scale also gave low Thai-DCAB scores while those who rated their patients as having ‘‘severe’’ symptoms scored high in the ThaiDCAB scores. Overall, the correlation between Thai-DCAB scores and NPI-Q-Thai severity scores was moderately significant (p < 0.05). 4. Discussion This study developed and explored the factor structure of a new scale to measure the burden of caregivers in caring for patients with dementia in Thailand. The Thai-DCAB scale is multidimensional and fits well with the Thai culture as it was developed from both literature review and in-depth interviews with experienced caregivers and clinicians. The scale captures key theoretical constructs of the perceived burden facing caregivers of patients with chronic and deteriorating diseases. In addition, it has high internal consistency and a high correlation between individual items with the entire scale. This indicates that the items had a high level of structural precision and that the total score of the scale would be the score that represents the total structure of the trait to be measured (Taweerat, 2000). The factor structure of the Thai-DCAB scale was determined to have three components, representing psychological, physical and financial burdens of the caregivers in caring for dementia patients. Compared to other scales, e.g. Zarit’s Burden scale (American Psychological Association, 2011) and the Caregiver Burden Scale (Macera et al., 1993), our scale has some similarities as well as some differences. The two aforementioned scales and the ThaiDCAB scale have questions reflecting internal feelings of the caregivers relating to stress, guilt and internal conflict in taking care of the patients. In Thailand, most caregivers of dementia patients are the patients’ children and since Thais consider caring for one’s parents as a duty and an opportunity to express gratitude, stress is not a big issue for them. However, caregivers who do feel
Table 1 Thai-DCAB scale: factor loadings. You feel concerned that. . .
1. You need to save your money, or you are troubled by the burden of debt in caring for the patients. 2. Your other relatives have little share in paying for the patient’s care. 3. Caring for the patient has created financial problems for you. 4. Caring for the patient has worsened your health. 5. Caring for the patient has exacerbated your existing physical conditions. 6. Caring for the patient has caused you to fall ill with physical diseases. 7. You do not have enough time to take care of yourself. 8. Your relatives have left you alone to care for the patient. 9. The patient is dependent on you or makes demands from you at all times. 10. You get angry and embarrassed by some of the patient’s behaviors. 11. You are ashamed and guilty of the things that you have done to the patient, including not giving him or her enough of your time. 12. The relationship between you and the patient has been a problem. 13. Caring for the patient has resulted in you having less time to participate in family and social activities. 14. You get stressed every time you care for the patient. 15. You cannot manage behaviors of the patient that stem from the disease. 16. You do not fully understand the patient’s disease or have not received information about caring for the patient. 17. You have difficulty finding social support to help you care for the patient (aside from the family and the hospital). 18. You have difficulty accessing medical facilities.
Component 1
2
3
0.121 0.116 0.155 0.349 0.352 0.273 0.284 0.353 0.551 0.542 – 0.617 0.393 0.574 0.885 0.941 0.765 0.601
0.386 – 0.351 0.84 0.814 0.85 0.793 0.178 0.344 0.283 0.708 0.313 0.518 0.339 0.25 0.101 0.29 0.297
0.719 0.949 0.841 0.282 0.257 0.175 0.363 0.626 0.411 0.124 0.183 0.311 0.163 0.213 – 0.103 0.258 0. 217
U. Taemeeyapradit et al. / Asian Journal of Psychiatry 8 (2014) 22–25
stressed but cannot express such socially undesirable feelings may make them feel more distressed and eventually become depressed. Therefore, it is important to include questions exploring these feelings of the caregivers in the scale, which will help in early detection and intervention of psychological problems among caregivers. Living in an extended family is common in Thailand. Brothers, sisters, grandchildren, parents and grandparents often live in the same household. They usually collaborate with each other or take turns in taking care of their parents. Two questions in the ThaiDCAB scale ask about the indexed caregiver’s concern about other family member’s or relative’s share in taking care of the patient in terms of both time and money. These two questions do not appear in the Zarit’s and Caregiver Burden scales. Our scale thus fits more to the Thai culture of family care as it depicts the need of collaborative care from other family members. One unique characteristic of the Thai-DCAB scale is that it asks about the caregiver’s access to health care, information and social support and financial burden. This is very important in Thailand. Similar to some other developing countries, there are only limited facilities for dementia care in Thailand. People in general do not understand the nature of the illness and how to take care of a dementia patient. Furthermore, caring for a dementia patient is expensive. Poor knowledge, inability to access medical care and social support and financial constraint can make a caregiver feel more burdened (Kingkand, 2010; Somboon, 2005). A significant relationship was found between the scores of the Thai-DCAB scale and the scores of the NPI-Q-Thai measuring the caregivers’ perceived severity of the neuropsychiatric symptoms of the patients with dementia. This finding provides some support for the convergence validity of the scale as one should expect that a caregiver who sees the patient’s symptoms as severe should feel more burdened in taking care of that patient. A strength of this study is that the respondents came from various educational and occupational backgrounds, had, on average, quite a lot of experience caring for dementia patients and the sample included both primary and secondary caregivers, thus the sample should be representative of caregivers of dementia patients throughout Thailand. However, the sample size of 203 was moderate, and the subject to item ratio of 10:1 might be considered to be a little low. The current study does not include a test for construct, discriminative and concurrent validity. Further testing of this instrument, using confirmatory factor analysis and comparing the scale scores with a standard instrument in a larger group of caregivers will help confirm the scale’s structure and further refine the questions. 5. Conclusion The Thai–DCAB scale is capable of measuring the burden of care for patients with dementia and in accordance with the social and cultural contexts and the way of life of the Thai and Asian people. The scale is easy to understand, requires 3–5 min to complete, and can be used by health personnel caring for patients with dementia and other chronic diseases to assess the burden of care among the caregivers and monitor the overall outcomes of the treatment based on the changes in the total perceived burden score. Each
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domain of the scale shows the needs of the caregiver, allowing health personnel to make plans and directly meet the needs of the patients and their family.
References American Psychological Association, 2011. Zarit Burden Interview. American Psychological Association, Washington, DC. , http://www.apa.org/pi/about/publications/caregivers/practice-settings/assessment/tools/zarit.aspx (retrieved 02.03.13). American Psychological Association, 2013. Caregiver assessment. American Psychological Association, Washington, DC. , http://www.apa.org/pi/about/publications/caregivers/practice-settings/assessment/tools/index.aspx (retrieved 02.03.12). Burns, A., Iliffe, S., 2009. Alzheimer’s disease. British Medical Journal 338, b158. Hemrungrojn, S., 2011. Neuropsychiatric inventory questionaire Thai version (NPIQ Thai). In: The Annual Meeting of the Royal College of Psychiatrists of Thailand Bangkok. Royal College of Psychiatrists of Thailand. Kaiser, H., 1974. An index of factorial simplicity. Psychometrika 39, 31–36. Kingkand, N., 2010. An Analysis of Research on Psychoeducation Groups for Caregivers of Older Adults with Dementia. Mahidol University, Bangkok, Thailand. Macera, C., Eaker, E., Jannarone, R., Davis, D., Stoskopf, C., 1993. A measure of perceived burden among caregivers. Evaluation & the Health Professions 16, 204–211. Nunnemann, S., Kurz, A., Leucht, S., Diehl-Schmid, J., 2012. Caregivers of patients with frontotemporal lobar degeneration: a review of burden, problems, needs, and interventions. International Psychogeriatrics 24, 1368–1386. Pai, S., Kapur, R.L., 1981. The burden on the family of a psychiatric patient: development of an interview schedule. British Journal of Psychiatry 138, 332–335. Papastavrou, E., Kalokerinou, A., Papacostas, S., Tsangari, H., Sourtzi, P., 2007. Caring for a relative with dementia: family caregiver burden. Journal of Advance Nursing 58, 446–457. Papastavrou, E., Tsangari, H., Karayiannis, G., Papacostas, S., Efstathiou, G., Sourtzi, P., 2011. Caring and coping: the dementia caregivers. Aging & Mental Health 15, 702–711. Seitz, D., Purandare, N., Conn, D., 2010. Prevalence of psychiatric disorders among older adults in long-term care homes: a systematic review. International Psychogeriatrics 22, 1025–1039. Serrano-Aguilar, P.G., Lopez-Bastida, J., Yanes-Lopez, V., 2006. Impact on healthrelated quality of life and perceived burden of informal caregivers of individuals with Alzheimer’s disease. Neuroepidemiology 27, 136–142. Somboon, S., 2005. Caregiving Preparedness Among Caregivers of Persons with Dementia Attending at Suan Prung Psychiatric Hospital. Chiangmai University, Chiangmai, Thailand, pp. 53–57 CMU e-theses. Songkhla Rajanagarindra Psychiatric Hospital, 2012. Annual report 2012. Songkhla Rajanagarindra Psychiatric Hospital, Songkhla, Thailand, pp. 50. Taweerat, P., 2000. Behavior and Society Research Method. Srinakarintarawirot University, Bangkok. Toonsiri, C., Sansern, R., 2011. Development of the burden interview for caregivers of patients with chronic illness. Journal of Nursing Education (Thailand) 4, 62– 75. United Nations, 2002. World Population Ageing: 1950–2050. Department of Economic and Social Affairs, Population Division, New York. http://www.un.org/ esa/population/publications/worldageing19502050/index.htm. United Nations, 2012. Population Facts. Department of Economic and Social Affairs, Population Division, New York. http://www.un.org/esa/population/publications/popfacts/popfacts_2012-4.pdf (retrieved 02.03.13). United Nations Population Fund, 2006. Population Ageing in Thailand: Prognosis and Policy Response. United Nations Population Fund, Bangkok. Van Durme, T., Macq, J., Jeanmart, C., Gobert, M., 2012. Tools for measuring the impact of informal caregiving of the elderly: a literature review. International Journal of Nursing Studies 49, 490–504. Varela, G., Varona, L., Anderson, K., Sansoni, J., 2011. Alzheimer’s care at home: a focus on caregivers strain. Professioni Infermieristiche 64, 113–117. Wang, K.Y., 2012. The care burden of families with members having intellectual and developmental disorder: a review of the recent literature. Current Opinion in Psychiatry 25, 348–352. World Health Organization and Alzheimer’s Disease International, 2012. Dementia: a Public Health Priority. World Health Organization, Geneva. Zarit, S.H., Reever, K.E., Bach-Peterson., J., 1980. Relatives of impaired elderly: correlates of feeling of burden. Gerontology 20, 649–655.
Contents lists available at ScienceDirect
Asian Journal of Psychiatry journal homepage: www.elsevier.com/locate/ajp
Development of a burden scale for caregivers of dementia patients Unchulee Taemeeyapradit a, Dussadee Udomittipong a, Sawitri Assanangkornchai b,* a b
Songkhlarajanakarindra Psychiatric Hospital, Muang District, Songkhla, Thailand Epidemiology Unit, Faculty of Medicine, Prince of Songkla University, Hat Yai, Songkhla, Thailand
A R T I C L E I N F O
A B S T R A C T
Article history: Received 27 March 2013 Received in revised form 1 September 2013 Accepted 22 September 2013
Objective: To develop a scale to measure the burden of care for caregivers of patients with dementia and explore its factor structure. Methods: The initial draft of the Thai dementia patients’ caregiver burden (Thai-DCAB) scale was developed based on literature review, in-depth interviews and expert opinions. The drafted scale was administered to 203 caregivers of dementia patients treated at two large public hospitals in southern Thailand. An exploratory factor analysis using maximum likelihood extraction with varimax rotation was conducted. The reliability of the scale was assessed using Cronbach’s alpha. Results: The Thai-DCAB scale consisted of 18 questions. Three factors were obtained, covering psychological, physical and financial burdens of the caregivers in taking care of dementia patients. These three factors accounted for 67% of the variance. The Cronbach’s alpha coefficient was 0.95. Conclusion: The Thai-DCAB scale has high internal consistency and captures key theoretical constructs of the perceived burden among caregivers of patients with chronic and deteriorating dementia and in accordance with the social and cultural contexts and the way of life of the Thai people. ß 2013 Elsevier B.V. All rights reserved.
Keywords: Burden scale Dementia Caregiver Factor structure
1. Introduction The change in the age structure of the population in the world has resulted in an increasing proportion of elderly people. Asia is one of the regions where many countries will face population aging in the near future. By 2050 it is expected that in many countries in the region more than 40% of the population cohort will be over 60 years of age and the median age will approach 40 years (United Nations, 2002). Asia had more than half (55%) of the world’s older people in 2012 (United Nations, 2012). Population aging influences family composition and living arrangements, and the need for health-care services. The health of older persons typically deteriorates with increasing age, inducing greater demand for long-term care as the number of older people increases. Dementia is one of the consequences of a rapid increase in the aging population worldwide. It is estimated that nearly 35.6 million people worldwide live with dementia, with the number being projected to almost double by 2030 and more than triple by 2050. About 58% of dementia patients live in low- and
* Corresponding author at: Epidemiology Unit, Faculty of Medicine, Prince of Songkla University, 15 Kanchanavanich Road, Hat Yai, Songkhla, 90112 Thailand. Tel.: +66 74 451165; fax: +66 74 429754. E-mail addresses: [email protected] (U. Taemeeyapradit), [email protected] (D. Udomittipong), [email protected] (S. Assanangkornchai). 1876-2018/$ – see front matter ß 2013 Elsevier B.V. All rights reserved. http://dx.doi.org/10.1016/j.ajp.2013.09.011
middle-income countries and it is likely to rise to more than 70% by 2050 (World Health Organization and Alzheimer’s Disease International, 2012). The population of Thailand is progressively aging. The proportion of older persons will increase to 14% in 2015, 20% in 2025 and nearly 30% by 2050 (United Nations Population Fund, 2006). In parallel, the prevalence of illnesses and diseases among the elderly will increase, including the prevalence of dementia, which increases with age. Dementia is devastating not only for the people who have it, but also for their caregivers and families. Aside from impairment of memory, thinking process, and cognitive function, 78% of patients with dementia also have co-existing behavioral, mental and emotional symptoms (Seitz et al., 2010). This prevalence is especially high among those with Alzheimer’s disease (Burns and Iliffe, 2009). Several studies have found that caregivers of dementia patients are faced with a high burden because of its extremely high cost of care and high need of dependency (Varela et al., 2011; Nunnemann et al., 2012; Wang, 2012). These can affect the interaction and relationship between family members, resulting in an increasing risk of mental disorders, such as depression, anxiety, sleep problems and stress, and a low quality of life among the caretakers (Serrano-Aguilar et al., 2006; Papastavrou et al., 2007, 2011; Varela et al., 2011). Several tools have been developed and used widely for measuring the caregivers’ burden for patients with chronic diseases and dementia such as the Zarit Burden Interview,
U. Taemeeyapradit et al. / Asian Journal of Psychiatry 8 (2014) 22–25
23
Caregiver Self-assessment Questionnaire, Brief Measures of Secondary Role and Intrapsychic Strains (American Psychological Association, 2013; Van Durme et al., 2012). These tools include items pertaining to the effects on the caregivers in term of emotional and mental health, physical health, employment, available personal time, family and social relations, feelings toward the patient, feeling of uncertainty and financial burden. However, these tools were developed based on a western culture. Asian societies differ from western societies mainly regarding the family bond and in the caring for elderly family members. Caring for one’s parents is considered a duty and a way to express one’s filial piety. In western societies, healthcare personnel are usually the main caregivers for the elderly while in Thai society, the family members or relatives play the major role as primary caregivers (Songkhla Rajanagarindra Psychiatric Hospital, 2012). As each country setting has its own unique context, the development of an assessment tool that suits the contexts of the Thai society is necessary. However, a measuring instrument on the burden of care in the Thai language is available only for chronic physical diseases and it was translated from English (Toonsiri and Sansern, 2011). This study thus aimed to develop an instrument – the Thai dementia patients’ caregiver burden (Thai-DCAB) scale to measure the burden of care of dementia patients on their caregivers. Such an instrument could provide clinically useful assessment information for health workers to identify caregivers with a high level of burden and make appropriate plans for the treatment and care of both the patients and their relatives. The current paper reports the development process and structure of this newly developed tool.
pilot test was to check the comprehensibility and wording of the scale, as well as time spent in completing the scale, thus a sample size of 43 caregivers was considered adequate. Some minor modifications of the wording were then made to improve the clarity. The final draft consisted of 20 questions. Each item was rated on a 5-point Likert scale, none, a little, moderate, a lot and greatest. It was hypothesized that a caregiver who took care of a dementia patient with severe behavioral and psychological symptoms would have a higher perceived burden. In order to examine this relationship, the Thai version of the Neuropsychiatric Inventory Questionnaire (NPI-Q-Thai) was administered to 43 caregivers. The NPI-Q-Thai is a questionnaire used to measure the patients’ behavior and psychological symptoms of dementia by asking the caregiver to rate the severity of the patient’s symptoms. It has been validated and used widely in clinical settings in Thailand (Hemrungrojn, 2011). There are 12 items: symptoms of delusion, hallucination, agitation and aggression, depression, anxiety, euphoria, apathy, disinhibition, irritability, aberrant motor behavior, difficulty sleeping, and eating problem.
2. Materials and methods
2.4. Data analysis
2.1. Subjects
Demographic data of caregivers were analyzed using descriptive statistics, i.e. frequency and percentage. Exploratory factor analysis with the maximum likelihood and varimax orthogonal rotation techniques was used to extract factor components. The number of components was retained based on the eigenvalues being greater than 1, an elbow in the graph of the scree-test and also on heuristic and practical grounds (Kaiser, 1974). Internal consistency was calculated for each component and the whole scale using Cronbach’s alpha coefficient. The overall NPI-Q-Thai score was calculated by summing the scores of 12 items and then categorized into tertiles. The relationship between the level of burden assessed by the Thai-DCAB scale and the caregivers’ perception of the severity of the patient’s symptoms was analyzed using ordinal logistic regression.
Caregivers of dementia patients who received treatment at the Songkhla Rajanakarindra Psychiatric Hospital or Surajthanee Regional Hospital during November 2011 to April 2012 were invited to participate in the study. Of 246 patients approached, 203 agreed to participate, giving a response rate of 82.5%. 2.2. Materials To prepare the initial draft of the scale, we reviewed the literature related to burdens of caregivers of patients with chronic diseases and dementia. In-depth interviews were then performed with nine caregivers of dementia patients and three mental health personnel who specialized in dementia care. Six sub-themes were derived from the literature review and in-depth interviews, including caregivers’ physical, mental and emotional health; availability of time for personal, family and social needs; financial burden; ability to provide care; accessibility to healthcare and social resources; and perception of participation of family members in terms of care-giving and their financial contribution. Under these sub-themes, an initial list of 20 items was initially developed. The first draft of the scale was reviewed by a panel of experts, including a psychiatrist, a neurologist, three psychiatric nurses, a clinical psychologist, an assessment specialist, a social worker, and three relatives or caregivers of dementia patients with five or more years of experience in providing care. The draft was then modified and reviewed again by four experts experienced in working with elderly patients with chronic medical and psychiatric conditions and/or dementia, including a clinical psychologist, a geriatric nurse, a psychiatric nurse and an assessment specialist, for its wording and face validity. The scale was then pilot tested on 43 caregivers of patients with dementia at the study psychiatric hospital. The purpose of this
2.3. Procedure Institutional ethical approval was obtained from Songkhla Rajanakarindra Psychiatric Hospital and Surajthanee Regional Hospital. All care-givers were fully informed about the purpose of the study and the procedure and gave their consent to participate. A face-to-face, structured interview was performed in privacy by a well trained nurse at the study hospitals.
3. Results 3.1. Sample characteristics Altogether, 203 caregivers participated in the study. Most were female (64.5%), married (67.5%) and Buddhist (67.4%). Their average age was 49.13 years (SD = 10.17 years, range = 29–65). More than one-third had bachelor’s degree education or higher (37.9%), while the rest achieved vocational (15.3%), secondary (24.1%) or primary school education (22.7%). Similar proportions were engaged in a fulltime job as a civil servant or state enterprise employee (27.6%), business owner and vendor (27.1%), or farmer (25.1%). Their average income was 31821 Thai Baht (1060 US dollars) per month. The highest proportion of caregivers was the patients’ children (56%), followed by spouse (33%). The average length of time in caring for the patient was 6.5 years (range = 1–13 years). The average age of dementia patients receiving care was 75.26 years (SD = 7.5 years), with a mean duration of illness being 4.9 years (SD = 3.64). Their average Thai Mini-mental Status
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Examination (TMSE) score was 14.89 (SD = 4.1), indicating moderate to severe cognitive impairment.
Table 2 Relationship between NPI-Q-Thai and Thai-DCAB scores. Thai-DCAB score
NPI-Q Thai score Mild (1–12)
Moderate (13–24)
Severe (25–36)
Low (0–20) Moderate (21–45) High (46–72)
8 (44.4) 6 (33.3) 4 (22.2)
12 (34.3) 18 (51.4) 5 (14.3)
3 (16.7) 7 (38.9) 8 (44.4)
3.2. Factor structure In the factor analysis of the Thai-DCAB scale, only variables with a factor loading more than 0.5 were selected for each component. However, there were many variables with high factor loading values on more than 1 component, causing the grouping of variables to lack clarity. Factor rotation was performed to help clarify the grouping process and this resulted in three components that could best describe the variation among the items of the scale (Table 1). Due to item cross-loadings between components and a somewhat overlapping meaning, two items were deleted – (1) Caring for the patient has worsened the relationship between you and your family and friends, and (2) You cannot tolerate caring for the patient anymore. The final version then consisted of 18 items in three components with eigenvalues of 5.6, 4.2 and 3.5, accounting for 28%, 21% and 18% (total = 67%) of the total variance, respectively. The first component consisted of nine items (9, 10, 12, 14, 15, 16, 17, and 18), representing the psychological burden and need for supporting resources. The second component consisted of five items (4, 5, 6, 7, 11 and 13), related mostly to physical health and personal time burdens. The third component consisted of four items (1, 2, 3 and 8), associated with financial burden and participation of other family members (Table 1). The internal consistency of items within the same component was high, (0.8766, 0.9039 and 0.9283 for factors 1–3, respectively) and Cronbach’s alpha coefficient for the overall scale was 0.9499. The Thai D-CAB captures key theoretical constructs of the burden of care born by caregivers of patients with chronic diseases reported in international literature, which define burden of care as perceived suffering in terms of emotional and physical health (items 4–6, 10, 11 and 14) social life (item 13) and financial status (items 1 and 3) as a result of caring patient with a chronic disease (Pai and Kapur, 1981; Zarit et al., 1980). 3.3. Relationship of the Thai-DCAB scale with the severity of the patient’s symptoms Table 2 shows the distribution of the Thai-DCAB scores among three levels of NPI-Q-Thai scores. Less than half of the caregivers
who perceived the patient’s symptoms as ‘‘mild’’ on the NPI-Q-Thai scale also gave low Thai-DCAB scores while those who rated their patients as having ‘‘severe’’ symptoms scored high in the ThaiDCAB scores. Overall, the correlation between Thai-DCAB scores and NPI-Q-Thai severity scores was moderately significant (p < 0.05). 4. Discussion This study developed and explored the factor structure of a new scale to measure the burden of caregivers in caring for patients with dementia in Thailand. The Thai-DCAB scale is multidimensional and fits well with the Thai culture as it was developed from both literature review and in-depth interviews with experienced caregivers and clinicians. The scale captures key theoretical constructs of the perceived burden facing caregivers of patients with chronic and deteriorating diseases. In addition, it has high internal consistency and a high correlation between individual items with the entire scale. This indicates that the items had a high level of structural precision and that the total score of the scale would be the score that represents the total structure of the trait to be measured (Taweerat, 2000). The factor structure of the Thai-DCAB scale was determined to have three components, representing psychological, physical and financial burdens of the caregivers in caring for dementia patients. Compared to other scales, e.g. Zarit’s Burden scale (American Psychological Association, 2011) and the Caregiver Burden Scale (Macera et al., 1993), our scale has some similarities as well as some differences. The two aforementioned scales and the ThaiDCAB scale have questions reflecting internal feelings of the caregivers relating to stress, guilt and internal conflict in taking care of the patients. In Thailand, most caregivers of dementia patients are the patients’ children and since Thais consider caring for one’s parents as a duty and an opportunity to express gratitude, stress is not a big issue for them. However, caregivers who do feel
Table 1 Thai-DCAB scale: factor loadings. You feel concerned that. . .
1. You need to save your money, or you are troubled by the burden of debt in caring for the patients. 2. Your other relatives have little share in paying for the patient’s care. 3. Caring for the patient has created financial problems for you. 4. Caring for the patient has worsened your health. 5. Caring for the patient has exacerbated your existing physical conditions. 6. Caring for the patient has caused you to fall ill with physical diseases. 7. You do not have enough time to take care of yourself. 8. Your relatives have left you alone to care for the patient. 9. The patient is dependent on you or makes demands from you at all times. 10. You get angry and embarrassed by some of the patient’s behaviors. 11. You are ashamed and guilty of the things that you have done to the patient, including not giving him or her enough of your time. 12. The relationship between you and the patient has been a problem. 13. Caring for the patient has resulted in you having less time to participate in family and social activities. 14. You get stressed every time you care for the patient. 15. You cannot manage behaviors of the patient that stem from the disease. 16. You do not fully understand the patient’s disease or have not received information about caring for the patient. 17. You have difficulty finding social support to help you care for the patient (aside from the family and the hospital). 18. You have difficulty accessing medical facilities.
Component 1
2
3
0.121 0.116 0.155 0.349 0.352 0.273 0.284 0.353 0.551 0.542 – 0.617 0.393 0.574 0.885 0.941 0.765 0.601
0.386 – 0.351 0.84 0.814 0.85 0.793 0.178 0.344 0.283 0.708 0.313 0.518 0.339 0.25 0.101 0.29 0.297
0.719 0.949 0.841 0.282 0.257 0.175 0.363 0.626 0.411 0.124 0.183 0.311 0.163 0.213 – 0.103 0.258 0. 217
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stressed but cannot express such socially undesirable feelings may make them feel more distressed and eventually become depressed. Therefore, it is important to include questions exploring these feelings of the caregivers in the scale, which will help in early detection and intervention of psychological problems among caregivers. Living in an extended family is common in Thailand. Brothers, sisters, grandchildren, parents and grandparents often live in the same household. They usually collaborate with each other or take turns in taking care of their parents. Two questions in the ThaiDCAB scale ask about the indexed caregiver’s concern about other family member’s or relative’s share in taking care of the patient in terms of both time and money. These two questions do not appear in the Zarit’s and Caregiver Burden scales. Our scale thus fits more to the Thai culture of family care as it depicts the need of collaborative care from other family members. One unique characteristic of the Thai-DCAB scale is that it asks about the caregiver’s access to health care, information and social support and financial burden. This is very important in Thailand. Similar to some other developing countries, there are only limited facilities for dementia care in Thailand. People in general do not understand the nature of the illness and how to take care of a dementia patient. Furthermore, caring for a dementia patient is expensive. Poor knowledge, inability to access medical care and social support and financial constraint can make a caregiver feel more burdened (Kingkand, 2010; Somboon, 2005). A significant relationship was found between the scores of the Thai-DCAB scale and the scores of the NPI-Q-Thai measuring the caregivers’ perceived severity of the neuropsychiatric symptoms of the patients with dementia. This finding provides some support for the convergence validity of the scale as one should expect that a caregiver who sees the patient’s symptoms as severe should feel more burdened in taking care of that patient. A strength of this study is that the respondents came from various educational and occupational backgrounds, had, on average, quite a lot of experience caring for dementia patients and the sample included both primary and secondary caregivers, thus the sample should be representative of caregivers of dementia patients throughout Thailand. However, the sample size of 203 was moderate, and the subject to item ratio of 10:1 might be considered to be a little low. The current study does not include a test for construct, discriminative and concurrent validity. Further testing of this instrument, using confirmatory factor analysis and comparing the scale scores with a standard instrument in a larger group of caregivers will help confirm the scale’s structure and further refine the questions. 5. Conclusion The Thai–DCAB scale is capable of measuring the burden of care for patients with dementia and in accordance with the social and cultural contexts and the way of life of the Thai and Asian people. The scale is easy to understand, requires 3–5 min to complete, and can be used by health personnel caring for patients with dementia and other chronic diseases to assess the burden of care among the caregivers and monitor the overall outcomes of the treatment based on the changes in the total perceived burden score. Each
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domain of the scale shows the needs of the caregiver, allowing health personnel to make plans and directly meet the needs of the patients and their family.
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