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Aging & Mental Health Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/camh20
Dementia in Asia: introduction to a special section a
b
c
Sheung-Tak Cheng , Kee-Lee Chou & Steven H. Zarit a
Department of Psychological Studies and Center for Psychosocial Health and Aging Hong Kong Institute of Education, Tai Po, N.T., Hong Kong b
Department of Asian and Policy Studies The Hong Kong Institute of Education Tai Po, N.T., Hong Kong c
Department of Human Development and Family Studies Penn State University University Park, PA, USA Published online: 31 Oct 2013.
To cite this article: Sheung-Tak Cheng, Kee-Lee Chou & Steven H. Zarit (2013) Dementia in Asia: introduction to a special section, Aging & Mental Health, 17:8, 911-914, DOI: 10.1080/13607863.2013.837151 To link to this article: http://dx.doi.org/10.1080/13607863.2013.837151
PLEASE SCROLL DOWN FOR ARTICLE Taylor & Francis makes every effort to ensure the accuracy of all the information (the “Content”) contained in the publications on our platform. However, Taylor & Francis, our agents, and our licensors make no representations or warranties whatsoever as to the accuracy, completeness, or suitability for any purpose of the Content. Any opinions and views expressed in this publication are the opinions and views of the authors, and are not the views of or endorsed by Taylor & Francis. The accuracy of the Content should not be relied upon and should be independently verified with primary sources of information. Taylor and Francis shall not be liable for any losses, actions, claims, proceedings, demands, costs, expenses, damages, and other liabilities whatsoever or howsoever caused arising directly or indirectly in connection with, in relation to or arising out of the use of the Content. This article may be used for research, teaching, and private study purposes. Any substantial or systematic reproduction, redistribution, reselling, loan, sub-licensing, systematic supply, or distribution in any form to anyone is expressly forbidden. Terms & Conditions of access and use can be found at http:// www.tandfonline.com/page/terms-and-conditions
Aging & Mental Health, 2013 Vol. 17, No. 8, 911–914, http://dx.doi.org/10.1080/13607863.2013.837151
EDITORIAL
Downloaded by [Korea University] at 19:51 30 December 2014
Dementia in Asia: introduction to a special section We are pleased to introduce the first of two special sections to appear in Aging and Mental Health on aging in East Asia. This section addresses research on dementia, and in our next issue, there will be a section on families and wellbeing. Asia, particularly Eastern Asia, is aging rapidly. The transition to an aging society, which happened over decades in the West, is now occurring in developing countries in Asia such as Vietnam in one generation. In countries that experienced economic development earlier, such as Japan and Hong Kong, there is now rapid growth in the proportion of oldest old in the population – people 80 and over. By the year 2040, Japan and Hong Kong are projected to lead the world in proportion of the oldest old, with 13.5% and 10.1% of their populations, respectively, over 80. The magnitude of these figures is highlighted in comparison with projections to the world overall (3.3%), Asia overall (3.1%), Europe (7.8%), and North America (7.3%). At advanced ages, the prevalence of cognitive impairment and dementia increases dramatically to onethird of persons aged 85 years or over. Not surprisingly, the increase in dementia prevalence is much more accelerated in Asia than in other parts of the world. In Asia (not including Australasia and the Middle East), estimates of persons suffering from dementia are 15.63, 32.51, and 60.13 million in the years 2010, 2030, and 2050, respectively (i.e., an almost threefold increase in 40 years). By comparison, the corresponding figures are 19.93, 33.18, and 55.25 millions for the rest of the world, a less than twofold increase in the same period (World Health Organization, 2012). Thus, Asia is expected to basically double its dementia population in about 15 years from now. This trend is most evident in China, due to its population size. The dementia population there is expected to increase from 5.4 million in 2010 to about 11 million in 2030, and then doubling again to about 22 million by 2050 (Cheng, 2012; World Health Organization, 2012). The sharp rise of dementia cases in the next few decades across East Asia has been called the ‘dementia tsunami’ or ‘dementia avalanche’ (Cheng, Lam, & Chow, 2012). The expected rise in dementia cases in Asia is expected to present enormous economic and healthcare challenges to societies and families, before most countries become economically and technologically advanced (Cheng, Chan, & Phillips, 2008). In light of these impending challenges, surprisingly little is known about dementia and dementia care in this region, although there is wide recognition that a lot more research is needed. A lack of expertise in dementia as well as limited research funds are common issues in this region. By bringing together several articles on dementia in East Asia, we hope to
Ó 2013 Taylor & Francis
stimulate dialog that expands our understanding and contributes to a foundation of knowledge that will help us meet the challenges ahead. The article in this issue by Leggett, Zarit, Hoang, and Nguyen illustrated the situation of dementia knowledge in many developing countries in Asia and elsewhere. Through collaborative work between researchers in Vietnam, Sweden, and the USA, the team investigated correlates of cognitive impairment in Da Nang, one of the largest cities in Vietnam, and its surrounding rural areas. The study had its goal in providing health officials information about rates of cognitive impairment to help in planning new health care programs for the growing populations of older people. A major challenge for the researchers was the lack of validated screening instruments. Using a Vietnamese version of the mini-mental state examination (MMSE; Folstein, Folstein, & McHugh, 1975) and adjusting cut-off scores for people with little or no formal education, the researchers found that 13% of the community sample was cognitively impaired. However, 111 (19%) of the 600 participants did not respond to the MMSE and those who did not respond tended to be older, women, residing in rural areas, unmarried, less educated, and more economically disadvantaged, as well as having more chronic illnesses and depressive symptoms. This suggests that the actual prevalence might have been higher. The study also considered factors associated with cognitive impairment. Several well-established demographic covariates such as being older, women, and less educated were significantly related to cognitive impairment, as was material hardship (defined as difficulties in obtaining basic daily necessities). This study has provided important data on cognitive impairment and its cross-sectional correlates in a large, community sample in Vietnam, and highlighted the importance of understanding the development and maintenance of mental skills in the context of financial and material hardship. Despite movement to provide more services for older people, the bulk of care still is provided by family. There has been more research in recent years trying to understand the determinants of caregiver outcomes in Asia (e.g., Cheng, Lam, & Kwok, 2013; Cheng, Lam, Kwok, Ng, & Fung, 2013, in press; Choo et al., 2003; Huang et al., 2009; Lim, Griva, Goh, Chionh, & Yap, 2011). These studies are generally informed by Pearlin’s stress process framework (Aneshensel, Pearlin, Mullan, Zarit, & Whitlatch, 1995; Pearlin, Mullan, Semple, & Skaff, 1990), aiming at revealing negative aspects of caregiver outcomes such as burden and depression, although some researchers have also investigated positive caregiver outcomes (Cheng et al., 2013; Lim et al., 2011).
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Three articles in this section examined caregiver issues and extended this emerging literature. The first article, by Li and Lewis, described initial efforts in translating and validating measures of expressed emotion into the Taiwan context, and studied its relationships with measures of burden, depression, and perceived health. Typically studied as a measure of the family environment that engenders relapse in episodic psychiatric illnesses (Brown, Monck, Carstairs, & Wing, 1962; Hooley, 2007), expressed emotion (i.e., the expression of negative emotion) has received less attention in the dementia caregiving literature (cf. Fearon, Donaldson, Burns, & Tarrier, 1998; Tarrier et al., 2002; Vitaliano, Young, Russo, & Romano, 1993; Wagner, Logsdon, Pearson, & Teri, 1997). Li and Lewis found expectedly moderate relationships of expressed emotion with burden and depressive symptoms. They also found that one of the four subscales of the Level of Expressed Emotion scale that measures tolerance had a very low internal reliability coefficient. The items were rarely endorsed by the participants and believed that it had to do with cultural beliefs in fatalism. As expressed emotions are linked to internal attributions (i.e., attributing behavioral problems to personal factors and seeing them as controllable by care-recipient; Tarrier et al., 2002), a fatalistic attitude may enhance acceptance of the illness despite the caregiver’s expression of negative emotions. The second study on caregiving in this section was conducted by Cheng, Ip, and Kwok and investigated the role of forgiveness in burden and potentially harmful behaviors. As a result of chronic stress, caregivers may become verbally and even physically abusive at times, although such behaviors often exist in milder forms or what has been termed ‘potentially harmful behaviors’ (Williamson & Shaffer, 2001). Drawing from research elsewhere on interpersonal processes, Cheng and colleagues proposed that caregivers may react to care-recipient’s behavioral problems by being forgiving instead of being angry so that their relationship would resume normalcy and the process of appraising behavior problems as threatening would be short-circuited. In a sample of Hong Kong Chinese dementia caregivers, the authors found that forgiveness partially mediated the relationship between behavioral problems and burden. Forgiveness was also associated with fewer potentially harmful behaviors directly and indirectly through reducing burden. This study sheds new light on the processes leading to different caregiver outcomes. Future research may examine the extent to which forgiveness is related to attributions about behavior problems and to expressed emotions. Coping responses of family caregivers have long been considered to be an important moderator between stressors and outcomes such as burden and well-being. Despite extensive interest in the field in coping, most studies have used scales that ask about how people generally cope, rather than using measures that address the specific challenges they face as caregivers. The third paper on family caregiving by Tan, Yap, Ng and Luo examines one of the few caregiver-specific coping measures, the Dementia Management Strategies Scale (Hinrichsen & Niederehe, 1994). Notably, they consider the appropriateness of items in the scale in an Asian cultural context as well as the
psychometric properties of the scale. The study is also notable for its use of mixed methods, including review of face validity and cultural appropriateness of items by experienced clinicians and in a focus group of family caregivers, as well as quantitative analysis of the factor structure, reliability and validity of the scale. The results yield a shortened scale with two subscales (positive and negative coping) that have excellent reliability and validity. Social services, especially those for caregivers, are generally lacking in developing countries (World Health Organization, 2012). This is particularly true for Asia, which tends to be dominated by a tradition of familism and by public policies that emphasize family self-reliance (i.e., the family’s responsibility to provide for the needs of its members; Cheng et al., 2008; Cheng, Lum, Lam, & Fung, 2013). One type of service that may be beneficial to both caregivers and care-recipients is adult day care (Gaugler et al., 2003; Zarit et al., 2011). There are relatively few such programs in East Asia and those that are available tend to offer a generic program, rather than one tailored for persons with dementia. In light of this background, it is interesting to see in this section a study from Taiwan, a country which has paid relatively more attention to developing quality day care. In this study, Liou and Jarrott contrast two different types of day care settings, one setting was dementia-specific, had a more home-like environment, and encouraged clients’ participation in various activities such as meal preparation. The other setting was not dementia-specific, resembled a hospital environment, and emphasized safety and conformity to routines. Using ethnographic methodology, Liou and Jarrott focused on the degree to which programs infantilized the clients and undermined their personhood. Compared with the hospital-like setting, clients in the home-like setting felt more secure and comfortable, engaged in more activities, and related to staff in pseudo-familial ways. In the hospital-like setting, staff was more distant with clients and justified constraints by emphasizing the clients’ impairments. The authors related the settings’ management philosophy to the Confucian tradition, which espouses hierarchical relationships and obedience to authority. However, their perceptive analysis revealed that even in such a cultural context, much can still be done to foster person-centered care that pays more respect to the clients and avoids dehumanization. A poor day care environment can cause more agitation, rather than being helpful to the care-recipients and their family members. The first author of this article also discussed her intellectual transformation after having studied in the USA and the importance of listening to the staff and service users without judging the Taiwan situation using just a foreign mindset. Although most persons with dementia are cared for in the community, some, especially those without family members to care for, will enter long-term residential care facilities. Sharing a cultural background of familism and filial piety, East Asian societies vary in the way they resort to using long-term care settings in dementia care. According to some estimates, the rate of institutionalization varies
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Editorial from under 2% in Taiwan to 7% in Hong Kong, with most countries around 3% (Lum, 2012). How persons with dementia are treated in these settings, and their quality of life, are critical issues that have been under-researched. The paper in this section by Zhong and Lou focused on residential care settings in China, a country in which this service sector is rapidly expanding. Similar to Liou and Jarrott, they were concerned with person-centered care as a standard for evaluating care. Their paper attempted to validate a psychometric measure of person-centered care at the organizational level because no such measure had been available for use in Mainland Chinese settings. While they started by translating an imported measure (i.e., the Person-centered Care Assessment Tools; Edvardsson, Fetherstonhaugh, Nay, & Gibson, 2010), they found that certain items in the original scale needed to be dropped while additional items identified by an expert panel were added to improve the psychometric properties of the scale. The eventual 15-item measure was found to fit a hypothesized factor structure tapping the extent of individualized care, organizational support, and environmental accessibility. While the development of this measure was still very preliminary, the study represents a good beginning in assessing person-centered care in this region. Finally, very few studies have examined utilization of emergency room and inpatient services among persons with dementia in residential care settings. Using data from 10 long-term care facilities in Hong Kong, Leung, Kwan, and Chi investigated medication use as well as cognitive and functional impairments as predictors of emergency room and hospital utilization in nursing home residents with Alzheimer’s disease. Using mixed-effects modeling, the authors found that polypharmacy was associated with a higher likelihood of hospitalization and emergency room use at both admission and follow-up, but the use of psychotropic drugs per se, presumably to manage behavioral and psychological symptoms, reduced emergency room usage. Moreover, cognitive impairment was associated with increased emergency room use at follow-up but functional impairment was not associated with any utilization measure at both time points. This study highlighted the importance of examining prescription practices in long-term care settings and the potential risk of over-medication. More studies are needed as all settings in the Leung et al. study were run by the same nongovernmental agency and so were probably similar in organizational policies and practices. Moreover, because dementia, especially when it is at a mild stage, tends to be under-recognized in long-term care settings in Hong Kong (Cheng et al., 2012), future studies may consider performing independent assessments rather than relying on the institution’s database for diagnostic information, so that a more representative sample would be obtained. Taken together, this collection of articles provides important data and insights about the situations of individuals with dementia and dementia care in selected Asian countries. The studies cover a broad range of topics from predictors of dementia to caregiving and the quality of care in day care and residential settings. They illustrate
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common issues in dementia and dementia care between East and West, but also unique sociocultural issues that await further investigations. Sheung-Tak Cheng Department of Psychological Studies and Center for Psychosocial Health and Aging Hong Kong Institute of Education, Tai Po, N.T., Hong Kong Kee-Lee Chou Department of Asian and Policy Studies The Hong Kong Institute of Education Tai Po, N.T., Hong Kong Steven H. Zarit Department of Human Development and Family Studies Penn State University University Park, PA, USA References Aneshensel, C.S., Pearlin, L.I., Mullan, J.T., Zarit, S.H., & Whitlatch, C.J. (1995). Profiles in caregiving: The unexpected career. San Diego, CA: Academic Press. Brown, G.W., Monck, E.M., Carstairs, G.M., & Wing, J.K. (1962). Influence of family life on the course of schizophrenic illness. British Journal of Preventive Social Medicine, 16, 55–68. Cheng, S.-T. (2012). Responding to the dementia tsunami: Dementia prevention and caregiver interventions. Invited Special Lecture, 第421屆香山科學會議, April 24–26, 2012, Beijing. Cheng, S.-T., Chan, A.C.M., & Phillips, D.R. (2008). The ageing situation in Asia and the Pacific: Trends and priorities. In United Nations Department of Economic and Social Affairs (Ed.), Regional dimensions of the ageing situation (pp. 35– 69). New York: United Nations. Cheng, S.-T., Lam, L.C.W., & Chow, P.K. (2012). Under-recognition of dementia in long-term care homes in Hong Kong. Aging & Mental Health, 16(4), 516–520. doi:10.1080/ 13607863.2011.630377 Cheng, S.-T., Lam, L.C.W., & Kwok, T. (2013). Neuropsychiatric symptom clusters of Alzheimer’s disease in Hong Kong Chinese: correlates with caregiver burden and depression. The American Journal of Geriatric Psychiatry, 21(10), 1029–1037. doi:10.1016/j.jagp.2013.01.041 Cheng, S.-T., Lam, L.C.W., Kwok, T., Ng, N.S.S., & Fung, A. W.T. (2013). Self-efficacy is associated with less burden and more gains from behavioral problems of Alzheimer’s disease in Hong Kong Chinese caregivers. The Gerontologist, 53(1), 71–80. doi:10.1093/geront/gns062 Cheng, S.-T., Lam, L.C.W., Kwok, T., Ng, N.S.S., & Fung, A. W.T. (in press). The social networks of Hong Kong Chinese family caregivers of Alzheimer’s disease: Correlates with positive gains and burden. The Gerontologist. doi:10.1093/ geront/gns195 Cheng, S.-T., Lum, T., Lam, L.C.W., & Fung, H.H. (2013). Hong Kong: Embracing a fast aging society with limited welfare. The Gerontologist, 53(4), 527–533. doi:10.1093/ geront/gnt017 Choo, W., Low, W., Karina, R., Poi, P.J.H., Ebenezer, E., & Prince, M.J. (2003). Social support and burden among caregivers of patients with dementia in Malaysia. Asia-Pacific Journal of Public Health, 15(1), 23–29. doi:10.1177/ 101053950301500105 Edvardsson, D., Fetherstonhaugh, D., Nay, R., & Gibson, S. (2010). Development and initial testing of the person-centered
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care assessment tool (P-CAT). International Psychogeriatrics, 22(1), 101–108. doi:10.1017/S1041610209990688 Fearon, M., Donaldson, C., Burns, A., & Tarrier, N. (1998). Intimacy as a determinant of expressed emotion in carers of people with Alzheimer’s disease. Psychological Medicine, 28(5), 1085–1090. doi:10.1017/S0033291798007156 Folstein, M.F., Folstein, S.E., & McHugh, P.R. (1975). Mini-mental state: A practical method for grading the cognitive state of patients for the clinician. Journal of Psychiatric Research, 12 (3), 189–198. doi:10.1016/0022-3956(75)90026-6 Gaugler, J.E., Jarrott, S.E., Zarit, S.H., Stephens, M.P., Townsend, A., & Greene, R. (2003). Adult day service use and reductions in caregiving hours: Effects on stress and psychological well-being for dementia caregivers. International Journal of Geriatric Psychiatry, 18(1), 55–62. Hinrichsen, G.A., & Niederehe, G. (1994). Dementia management strategies and adjustment of family members of older patients. The Gerontologist, 34, 95–102. Hooley, J.M. (2007). Expressed emotion and relapse of psychopathology. Annual Review of Clinical Psychology, 3, 329– 352. doi:10.1146/annurev.clinpsy.2.022305.095236 Huang, C., Sousa, V.D., Perng, S., Hwang, M., Tsai, C., Huang, M., & Yao, S. (2009). Stressors, social support, depressive symptoms and general health status of Taiwanese caregivers of persons with stroke or Alzheimer’s disease. Journal of Clinical Nursing, 18(4), 502–511. doi:10.1111/j.13652702.2008.02443.x Lim, J., Griva, K., Goh, J., Chionh, H.L., & Yap, P. (2011). Coping strategies influence caregiver outcomes among Asian family caregivers of persons with dementia in Singapore. Alzheimer Disease and Associated Disorders, 25(1), 34–41. doi:10.1097/WAD.0b013e3181ec18ae
Lum, T. (2012). Long-term care in Asia. Journal of Gerontological Social Work, 55(7), 563–569. doi:10.1080/ 01634372.2012.716730 Pearlin, L.I., Mullan, J.T., Semple, S.J., & Skaff, M.M. (1990). Caregiving and the stress process: An overview of concepts and their measures. The Gerontologist, 30(5), 583–594. Tarrier, N., Barrowclough, C., Ward, J., Donaldson, C., Burns, A., & Gregg, L. (2002). Expressed emotion and attributions in the carers of patients with Alzheimer’s disease: The effect on carer burden. Journal of Abnormal Psychology, 111(2), 340–349. doi:10.1037/0021-843X.111.2.340 Vitaliano, P.P., Young, H.M., Russo, J., & Romano, J. (1993). Does expressed emotion in spouses predict subsequent problems among care recipients with Alzheimer’s disease? Journal of Gerontology, 48(4), P202–P209. doi:10.1093/geronj/ 48.4.P202 Wagner, A.W., Logsdon, R.G., Pearson, J.L., & Teri, L. (1997). Caregiver expressed emotion and depression in Alzheimer’s disease. Aging & Mental Health, 1(2), 132–139. doi:10.1080/13607869757227 Williamson, G.M., & Shaffer, D.R. (2001). Relationship quality and potentially harmful behaviors by spousal caregivers: How we were then, how we are now. Psychology and Aging, 16(2), 217–226. doi:10.1037/0882-7974.16.2.217 World Health Organization. (2012). Dementia: A public health priority. Geneva, Switzerland: Author. Zarit, S.H., Kim, K., Femia, E.E., Almeida, D.M., Savla, J., & Molenaar, P.C.M. (2011). Effects of adult day care on daily stress of caregivers: A within-person approach. The Journals of Gerontology, Series B: Psychological Sciences and Social Sciences, 66B(5), 538–546. doi:10.1093/geronb/gbr030
Aging & Mental Health Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/camh20
Dementia in Asia: introduction to a special section a
b
c
Sheung-Tak Cheng , Kee-Lee Chou & Steven H. Zarit a
Department of Psychological Studies and Center for Psychosocial Health and Aging Hong Kong Institute of Education, Tai Po, N.T., Hong Kong b
Department of Asian and Policy Studies The Hong Kong Institute of Education Tai Po, N.T., Hong Kong c
Department of Human Development and Family Studies Penn State University University Park, PA, USA Published online: 31 Oct 2013.
To cite this article: Sheung-Tak Cheng, Kee-Lee Chou & Steven H. Zarit (2013) Dementia in Asia: introduction to a special section, Aging & Mental Health, 17:8, 911-914, DOI: 10.1080/13607863.2013.837151 To link to this article: http://dx.doi.org/10.1080/13607863.2013.837151
PLEASE SCROLL DOWN FOR ARTICLE Taylor & Francis makes every effort to ensure the accuracy of all the information (the “Content”) contained in the publications on our platform. However, Taylor & Francis, our agents, and our licensors make no representations or warranties whatsoever as to the accuracy, completeness, or suitability for any purpose of the Content. Any opinions and views expressed in this publication are the opinions and views of the authors, and are not the views of or endorsed by Taylor & Francis. The accuracy of the Content should not be relied upon and should be independently verified with primary sources of information. Taylor and Francis shall not be liable for any losses, actions, claims, proceedings, demands, costs, expenses, damages, and other liabilities whatsoever or howsoever caused arising directly or indirectly in connection with, in relation to or arising out of the use of the Content. This article may be used for research, teaching, and private study purposes. Any substantial or systematic reproduction, redistribution, reselling, loan, sub-licensing, systematic supply, or distribution in any form to anyone is expressly forbidden. Terms & Conditions of access and use can be found at http:// www.tandfonline.com/page/terms-and-conditions
Aging & Mental Health, 2013 Vol. 17, No. 8, 911–914, http://dx.doi.org/10.1080/13607863.2013.837151
EDITORIAL
Downloaded by [Korea University] at 19:51 30 December 2014
Dementia in Asia: introduction to a special section We are pleased to introduce the first of two special sections to appear in Aging and Mental Health on aging in East Asia. This section addresses research on dementia, and in our next issue, there will be a section on families and wellbeing. Asia, particularly Eastern Asia, is aging rapidly. The transition to an aging society, which happened over decades in the West, is now occurring in developing countries in Asia such as Vietnam in one generation. In countries that experienced economic development earlier, such as Japan and Hong Kong, there is now rapid growth in the proportion of oldest old in the population – people 80 and over. By the year 2040, Japan and Hong Kong are projected to lead the world in proportion of the oldest old, with 13.5% and 10.1% of their populations, respectively, over 80. The magnitude of these figures is highlighted in comparison with projections to the world overall (3.3%), Asia overall (3.1%), Europe (7.8%), and North America (7.3%). At advanced ages, the prevalence of cognitive impairment and dementia increases dramatically to onethird of persons aged 85 years or over. Not surprisingly, the increase in dementia prevalence is much more accelerated in Asia than in other parts of the world. In Asia (not including Australasia and the Middle East), estimates of persons suffering from dementia are 15.63, 32.51, and 60.13 million in the years 2010, 2030, and 2050, respectively (i.e., an almost threefold increase in 40 years). By comparison, the corresponding figures are 19.93, 33.18, and 55.25 millions for the rest of the world, a less than twofold increase in the same period (World Health Organization, 2012). Thus, Asia is expected to basically double its dementia population in about 15 years from now. This trend is most evident in China, due to its population size. The dementia population there is expected to increase from 5.4 million in 2010 to about 11 million in 2030, and then doubling again to about 22 million by 2050 (Cheng, 2012; World Health Organization, 2012). The sharp rise of dementia cases in the next few decades across East Asia has been called the ‘dementia tsunami’ or ‘dementia avalanche’ (Cheng, Lam, & Chow, 2012). The expected rise in dementia cases in Asia is expected to present enormous economic and healthcare challenges to societies and families, before most countries become economically and technologically advanced (Cheng, Chan, & Phillips, 2008). In light of these impending challenges, surprisingly little is known about dementia and dementia care in this region, although there is wide recognition that a lot more research is needed. A lack of expertise in dementia as well as limited research funds are common issues in this region. By bringing together several articles on dementia in East Asia, we hope to
Ó 2013 Taylor & Francis
stimulate dialog that expands our understanding and contributes to a foundation of knowledge that will help us meet the challenges ahead. The article in this issue by Leggett, Zarit, Hoang, and Nguyen illustrated the situation of dementia knowledge in many developing countries in Asia and elsewhere. Through collaborative work between researchers in Vietnam, Sweden, and the USA, the team investigated correlates of cognitive impairment in Da Nang, one of the largest cities in Vietnam, and its surrounding rural areas. The study had its goal in providing health officials information about rates of cognitive impairment to help in planning new health care programs for the growing populations of older people. A major challenge for the researchers was the lack of validated screening instruments. Using a Vietnamese version of the mini-mental state examination (MMSE; Folstein, Folstein, & McHugh, 1975) and adjusting cut-off scores for people with little or no formal education, the researchers found that 13% of the community sample was cognitively impaired. However, 111 (19%) of the 600 participants did not respond to the MMSE and those who did not respond tended to be older, women, residing in rural areas, unmarried, less educated, and more economically disadvantaged, as well as having more chronic illnesses and depressive symptoms. This suggests that the actual prevalence might have been higher. The study also considered factors associated with cognitive impairment. Several well-established demographic covariates such as being older, women, and less educated were significantly related to cognitive impairment, as was material hardship (defined as difficulties in obtaining basic daily necessities). This study has provided important data on cognitive impairment and its cross-sectional correlates in a large, community sample in Vietnam, and highlighted the importance of understanding the development and maintenance of mental skills in the context of financial and material hardship. Despite movement to provide more services for older people, the bulk of care still is provided by family. There has been more research in recent years trying to understand the determinants of caregiver outcomes in Asia (e.g., Cheng, Lam, & Kwok, 2013; Cheng, Lam, Kwok, Ng, & Fung, 2013, in press; Choo et al., 2003; Huang et al., 2009; Lim, Griva, Goh, Chionh, & Yap, 2011). These studies are generally informed by Pearlin’s stress process framework (Aneshensel, Pearlin, Mullan, Zarit, & Whitlatch, 1995; Pearlin, Mullan, Semple, & Skaff, 1990), aiming at revealing negative aspects of caregiver outcomes such as burden and depression, although some researchers have also investigated positive caregiver outcomes (Cheng et al., 2013; Lim et al., 2011).
Downloaded by [Korea University] at 19:51 30 December 2014
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Three articles in this section examined caregiver issues and extended this emerging literature. The first article, by Li and Lewis, described initial efforts in translating and validating measures of expressed emotion into the Taiwan context, and studied its relationships with measures of burden, depression, and perceived health. Typically studied as a measure of the family environment that engenders relapse in episodic psychiatric illnesses (Brown, Monck, Carstairs, & Wing, 1962; Hooley, 2007), expressed emotion (i.e., the expression of negative emotion) has received less attention in the dementia caregiving literature (cf. Fearon, Donaldson, Burns, & Tarrier, 1998; Tarrier et al., 2002; Vitaliano, Young, Russo, & Romano, 1993; Wagner, Logsdon, Pearson, & Teri, 1997). Li and Lewis found expectedly moderate relationships of expressed emotion with burden and depressive symptoms. They also found that one of the four subscales of the Level of Expressed Emotion scale that measures tolerance had a very low internal reliability coefficient. The items were rarely endorsed by the participants and believed that it had to do with cultural beliefs in fatalism. As expressed emotions are linked to internal attributions (i.e., attributing behavioral problems to personal factors and seeing them as controllable by care-recipient; Tarrier et al., 2002), a fatalistic attitude may enhance acceptance of the illness despite the caregiver’s expression of negative emotions. The second study on caregiving in this section was conducted by Cheng, Ip, and Kwok and investigated the role of forgiveness in burden and potentially harmful behaviors. As a result of chronic stress, caregivers may become verbally and even physically abusive at times, although such behaviors often exist in milder forms or what has been termed ‘potentially harmful behaviors’ (Williamson & Shaffer, 2001). Drawing from research elsewhere on interpersonal processes, Cheng and colleagues proposed that caregivers may react to care-recipient’s behavioral problems by being forgiving instead of being angry so that their relationship would resume normalcy and the process of appraising behavior problems as threatening would be short-circuited. In a sample of Hong Kong Chinese dementia caregivers, the authors found that forgiveness partially mediated the relationship between behavioral problems and burden. Forgiveness was also associated with fewer potentially harmful behaviors directly and indirectly through reducing burden. This study sheds new light on the processes leading to different caregiver outcomes. Future research may examine the extent to which forgiveness is related to attributions about behavior problems and to expressed emotions. Coping responses of family caregivers have long been considered to be an important moderator between stressors and outcomes such as burden and well-being. Despite extensive interest in the field in coping, most studies have used scales that ask about how people generally cope, rather than using measures that address the specific challenges they face as caregivers. The third paper on family caregiving by Tan, Yap, Ng and Luo examines one of the few caregiver-specific coping measures, the Dementia Management Strategies Scale (Hinrichsen & Niederehe, 1994). Notably, they consider the appropriateness of items in the scale in an Asian cultural context as well as the
psychometric properties of the scale. The study is also notable for its use of mixed methods, including review of face validity and cultural appropriateness of items by experienced clinicians and in a focus group of family caregivers, as well as quantitative analysis of the factor structure, reliability and validity of the scale. The results yield a shortened scale with two subscales (positive and negative coping) that have excellent reliability and validity. Social services, especially those for caregivers, are generally lacking in developing countries (World Health Organization, 2012). This is particularly true for Asia, which tends to be dominated by a tradition of familism and by public policies that emphasize family self-reliance (i.e., the family’s responsibility to provide for the needs of its members; Cheng et al., 2008; Cheng, Lum, Lam, & Fung, 2013). One type of service that may be beneficial to both caregivers and care-recipients is adult day care (Gaugler et al., 2003; Zarit et al., 2011). There are relatively few such programs in East Asia and those that are available tend to offer a generic program, rather than one tailored for persons with dementia. In light of this background, it is interesting to see in this section a study from Taiwan, a country which has paid relatively more attention to developing quality day care. In this study, Liou and Jarrott contrast two different types of day care settings, one setting was dementia-specific, had a more home-like environment, and encouraged clients’ participation in various activities such as meal preparation. The other setting was not dementia-specific, resembled a hospital environment, and emphasized safety and conformity to routines. Using ethnographic methodology, Liou and Jarrott focused on the degree to which programs infantilized the clients and undermined their personhood. Compared with the hospital-like setting, clients in the home-like setting felt more secure and comfortable, engaged in more activities, and related to staff in pseudo-familial ways. In the hospital-like setting, staff was more distant with clients and justified constraints by emphasizing the clients’ impairments. The authors related the settings’ management philosophy to the Confucian tradition, which espouses hierarchical relationships and obedience to authority. However, their perceptive analysis revealed that even in such a cultural context, much can still be done to foster person-centered care that pays more respect to the clients and avoids dehumanization. A poor day care environment can cause more agitation, rather than being helpful to the care-recipients and their family members. The first author of this article also discussed her intellectual transformation after having studied in the USA and the importance of listening to the staff and service users without judging the Taiwan situation using just a foreign mindset. Although most persons with dementia are cared for in the community, some, especially those without family members to care for, will enter long-term residential care facilities. Sharing a cultural background of familism and filial piety, East Asian societies vary in the way they resort to using long-term care settings in dementia care. According to some estimates, the rate of institutionalization varies
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Editorial from under 2% in Taiwan to 7% in Hong Kong, with most countries around 3% (Lum, 2012). How persons with dementia are treated in these settings, and their quality of life, are critical issues that have been under-researched. The paper in this section by Zhong and Lou focused on residential care settings in China, a country in which this service sector is rapidly expanding. Similar to Liou and Jarrott, they were concerned with person-centered care as a standard for evaluating care. Their paper attempted to validate a psychometric measure of person-centered care at the organizational level because no such measure had been available for use in Mainland Chinese settings. While they started by translating an imported measure (i.e., the Person-centered Care Assessment Tools; Edvardsson, Fetherstonhaugh, Nay, & Gibson, 2010), they found that certain items in the original scale needed to be dropped while additional items identified by an expert panel were added to improve the psychometric properties of the scale. The eventual 15-item measure was found to fit a hypothesized factor structure tapping the extent of individualized care, organizational support, and environmental accessibility. While the development of this measure was still very preliminary, the study represents a good beginning in assessing person-centered care in this region. Finally, very few studies have examined utilization of emergency room and inpatient services among persons with dementia in residential care settings. Using data from 10 long-term care facilities in Hong Kong, Leung, Kwan, and Chi investigated medication use as well as cognitive and functional impairments as predictors of emergency room and hospital utilization in nursing home residents with Alzheimer’s disease. Using mixed-effects modeling, the authors found that polypharmacy was associated with a higher likelihood of hospitalization and emergency room use at both admission and follow-up, but the use of psychotropic drugs per se, presumably to manage behavioral and psychological symptoms, reduced emergency room usage. Moreover, cognitive impairment was associated with increased emergency room use at follow-up but functional impairment was not associated with any utilization measure at both time points. This study highlighted the importance of examining prescription practices in long-term care settings and the potential risk of over-medication. More studies are needed as all settings in the Leung et al. study were run by the same nongovernmental agency and so were probably similar in organizational policies and practices. Moreover, because dementia, especially when it is at a mild stage, tends to be under-recognized in long-term care settings in Hong Kong (Cheng et al., 2012), future studies may consider performing independent assessments rather than relying on the institution’s database for diagnostic information, so that a more representative sample would be obtained. Taken together, this collection of articles provides important data and insights about the situations of individuals with dementia and dementia care in selected Asian countries. The studies cover a broad range of topics from predictors of dementia to caregiving and the quality of care in day care and residential settings. They illustrate
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common issues in dementia and dementia care between East and West, but also unique sociocultural issues that await further investigations. Sheung-Tak Cheng Department of Psychological Studies and Center for Psychosocial Health and Aging Hong Kong Institute of Education, Tai Po, N.T., Hong Kong Kee-Lee Chou Department of Asian and Policy Studies The Hong Kong Institute of Education Tai Po, N.T., Hong Kong Steven H. Zarit Department of Human Development and Family Studies Penn State University University Park, PA, USA References Aneshensel, C.S., Pearlin, L.I., Mullan, J.T., Zarit, S.H., & Whitlatch, C.J. (1995). Profiles in caregiving: The unexpected career. San Diego, CA: Academic Press. Brown, G.W., Monck, E.M., Carstairs, G.M., & Wing, J.K. (1962). Influence of family life on the course of schizophrenic illness. British Journal of Preventive Social Medicine, 16, 55–68. Cheng, S.-T. (2012). Responding to the dementia tsunami: Dementia prevention and caregiver interventions. Invited Special Lecture, 第421屆香山科學會議, April 24–26, 2012, Beijing. Cheng, S.-T., Chan, A.C.M., & Phillips, D.R. (2008). The ageing situation in Asia and the Pacific: Trends and priorities. In United Nations Department of Economic and Social Affairs (Ed.), Regional dimensions of the ageing situation (pp. 35– 69). New York: United Nations. Cheng, S.-T., Lam, L.C.W., & Chow, P.K. (2012). Under-recognition of dementia in long-term care homes in Hong Kong. Aging & Mental Health, 16(4), 516–520. doi:10.1080/ 13607863.2011.630377 Cheng, S.-T., Lam, L.C.W., & Kwok, T. (2013). Neuropsychiatric symptom clusters of Alzheimer’s disease in Hong Kong Chinese: correlates with caregiver burden and depression. The American Journal of Geriatric Psychiatry, 21(10), 1029–1037. doi:10.1016/j.jagp.2013.01.041 Cheng, S.-T., Lam, L.C.W., Kwok, T., Ng, N.S.S., & Fung, A. W.T. (2013). Self-efficacy is associated with less burden and more gains from behavioral problems of Alzheimer’s disease in Hong Kong Chinese caregivers. The Gerontologist, 53(1), 71–80. doi:10.1093/geront/gns062 Cheng, S.-T., Lam, L.C.W., Kwok, T., Ng, N.S.S., & Fung, A. W.T. (in press). The social networks of Hong Kong Chinese family caregivers of Alzheimer’s disease: Correlates with positive gains and burden. The Gerontologist. doi:10.1093/ geront/gns195 Cheng, S.-T., Lum, T., Lam, L.C.W., & Fung, H.H. (2013). Hong Kong: Embracing a fast aging society with limited welfare. The Gerontologist, 53(4), 527–533. doi:10.1093/ geront/gnt017 Choo, W., Low, W., Karina, R., Poi, P.J.H., Ebenezer, E., & Prince, M.J. (2003). Social support and burden among caregivers of patients with dementia in Malaysia. Asia-Pacific Journal of Public Health, 15(1), 23–29. doi:10.1177/ 101053950301500105 Edvardsson, D., Fetherstonhaugh, D., Nay, R., & Gibson, S. (2010). Development and initial testing of the person-centered
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care assessment tool (P-CAT). International Psychogeriatrics, 22(1), 101–108. doi:10.1017/S1041610209990688 Fearon, M., Donaldson, C., Burns, A., & Tarrier, N. (1998). Intimacy as a determinant of expressed emotion in carers of people with Alzheimer’s disease. Psychological Medicine, 28(5), 1085–1090. doi:10.1017/S0033291798007156 Folstein, M.F., Folstein, S.E., & McHugh, P.R. (1975). Mini-mental state: A practical method for grading the cognitive state of patients for the clinician. Journal of Psychiatric Research, 12 (3), 189–198. doi:10.1016/0022-3956(75)90026-6 Gaugler, J.E., Jarrott, S.E., Zarit, S.H., Stephens, M.P., Townsend, A., & Greene, R. (2003). Adult day service use and reductions in caregiving hours: Effects on stress and psychological well-being for dementia caregivers. International Journal of Geriatric Psychiatry, 18(1), 55–62. Hinrichsen, G.A., & Niederehe, G. (1994). Dementia management strategies and adjustment of family members of older patients. The Gerontologist, 34, 95–102. Hooley, J.M. (2007). Expressed emotion and relapse of psychopathology. Annual Review of Clinical Psychology, 3, 329– 352. doi:10.1146/annurev.clinpsy.2.022305.095236 Huang, C., Sousa, V.D., Perng, S., Hwang, M., Tsai, C., Huang, M., & Yao, S. (2009). Stressors, social support, depressive symptoms and general health status of Taiwanese caregivers of persons with stroke or Alzheimer’s disease. Journal of Clinical Nursing, 18(4), 502–511. doi:10.1111/j.13652702.2008.02443.x Lim, J., Griva, K., Goh, J., Chionh, H.L., & Yap, P. (2011). Coping strategies influence caregiver outcomes among Asian family caregivers of persons with dementia in Singapore. Alzheimer Disease and Associated Disorders, 25(1), 34–41. doi:10.1097/WAD.0b013e3181ec18ae
Lum, T. (2012). Long-term care in Asia. Journal of Gerontological Social Work, 55(7), 563–569. doi:10.1080/ 01634372.2012.716730 Pearlin, L.I., Mullan, J.T., Semple, S.J., & Skaff, M.M. (1990). Caregiving and the stress process: An overview of concepts and their measures. The Gerontologist, 30(5), 583–594. Tarrier, N., Barrowclough, C., Ward, J., Donaldson, C., Burns, A., & Gregg, L. (2002). Expressed emotion and attributions in the carers of patients with Alzheimer’s disease: The effect on carer burden. Journal of Abnormal Psychology, 111(2), 340–349. doi:10.1037/0021-843X.111.2.340 Vitaliano, P.P., Young, H.M., Russo, J., & Romano, J. (1993). Does expressed emotion in spouses predict subsequent problems among care recipients with Alzheimer’s disease? Journal of Gerontology, 48(4), P202–P209. doi:10.1093/geronj/ 48.4.P202 Wagner, A.W., Logsdon, R.G., Pearson, J.L., & Teri, L. (1997). Caregiver expressed emotion and depression in Alzheimer’s disease. Aging & Mental Health, 1(2), 132–139. doi:10.1080/13607869757227 Williamson, G.M., & Shaffer, D.R. (2001). Relationship quality and potentially harmful behaviors by spousal caregivers: How we were then, how we are now. Psychology and Aging, 16(2), 217–226. doi:10.1037/0882-7974.16.2.217 World Health Organization. (2012). Dementia: A public health priority. Geneva, Switzerland: Author. Zarit, S.H., Kim, K., Femia, E.E., Almeida, D.M., Savla, J., & Molenaar, P.C.M. (2011). Effects of adult day care on daily stress of caregivers: A within-person approach. The Journals of Gerontology, Series B: Psychological Sciences and Social Sciences, 66B(5), 538–546. doi:10.1093/geronb/gbr030
