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Education and Executive Function Mediate Engagement in Advance Care Planning in Early Cognitive Impairment
JAMDA xxx (2015) 1e6
JAMDA journal homepage: www.jamda.com
Original Study
Education and Executive Function Mediate Engagement in Advance Care Planning in Early Cognitive Impairment Sze Yan Tay MPsych a, John Davison DClinPsy b, Ng Chong Jin MRCP c, Yap Lin Kiat Philip MRCP c, * a
Department of Neurology, Singapore General Hospital, Singapore Department of Psychology, National University of Singapore, Singapore c Department of Geriatric Medicine, Khoo Teck Puat Hospital, Singapore b
a b s t r a c t Keywords: Advanced care planning (ACP) mild cognitive impairment early dementia education executive function
Background: Advance care planning (ACP) is an important component to holistic care for people with early cognitive impairment (ECI) who are generally still mentally capable of making rational decisions. This study explores the willingness of people with ECI to engage in ACP and how clinical and behavioral variables shape their decisions. Methods: Ninety-eight persons with ECI (mild cognitive impairment or early dementia, Clinical Dementia Rating ¼ 0.5/1.0) and assessed to have adequate insight (Clinical Insight Rating Scale) underwent an ACP information session. They were assessed on their knowledge of dementia (Knowledge of Alzheimer Disease) and willingness to engage in ACP, and were interviewed on their beliefs and attitudes toward ACP (Perceived Barriers and Benefits Scale to ACP). Univariate analysis and logistic regression identified factors that predicted persons willing or unwilling to engage in ACP based on their responses to the perceived barriers and benefits of ACP as well as sociodemographic and clinical variables. Results: Fifty-two persons (54%) were keen on ACP. On univariate analysis, persons with better executive function [Frontal Assessment Battery (FAB)] (t ¼ 3.63, P < .0001), were more educated (t ¼ 2.11, P ¼ .038) and had lower barriers to ACP (t ¼ 2.47, P ¼ .015), particularly less “passive coping” (t ¼ 2.83, P ¼ .006), were more keen on ACP. Logistic regression revealed that the combined predictive model comprising FAB, education, and passive coping as a whole reliably differentiated those unwilling to engage in ACP from those who were willing (c2 ¼ 18.995, P ¼ .001 with df ¼ 4). Wald criterion showed that FAB (P ¼ .016) and passive coping (P ¼ .023) contributed most to prediction. Conclusions: Better education and executive function predict willingness to engage in ACP, and these factors are instrumental in a person’s ability to acquire knowledge and process information. Initiating ACP discussions early, increasing efforts at education, and providing tailored information are important interventions that facilitate completion of ACP. Ó 2015 AMDA e The Society for Post-Acute and Long-Term Care Medicine.
Advance care planning (ACP) is an essential component of holistic care for people with early dementia when individuals are generally still mentally capable of making rational decisions. ACP involves thinking about one’s preferences and goals of care and communicating them to the person who will be making decisions on one’s behalf such as a loved one, proxy decision maker, or healthcare provider.1 A recent review of ACP in dementia indicated that patients with mild dementia are capable of being involved in ACP, and concerns with regards to adverse reactions to ACP conversations have been unfounded.2 As people with dementia can be in good physical
The authors declare no conflicts of interest. * Address correspondence to Yap Lin Kiat Philip, Department of Geriatric Medicine, Khoo Teck Puat Hospital, 90 Yishun Central, Singapore 768828. E-mail address: [email protected] (Y.L.K. Philip). http://dx.doi.org/10.1016/j.jamda.2015.05.014 1525-8610/Ó 2015 AMDA e The Society for Post-Acute and Long-Term Care Medicine.
health for relatively long periods of time despite prolonged periods of mental incapacity, planning of their long-time health and social care needs in addition to end-of-life care decisions is necessary. Good long-term care planning also helps prepare family members who are often plagued by guilt, feelings of failure, and the strain of care in the later stages of the disease, and are frequently unprepared to make effective decisions for the patient.3 The undertaking of ACP by the person with dementia is advocated to reduce this burden. However, the rates of ACP completion around the world are still modest4 and may account in part for the inadequate end-of-life care and symptom management in people with dementia. In a 5-year follow-up study, it was found that despite knowing the risk of future decisional incapacity, only a minority of patients with cognitive impairments went on to complete ACP.5 Understanding the reasons for this poor response is pertinent for policy-planning as well
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as for the establishment of effective long-term care plans. Attitudes and beliefs can influence willingness for ACP. For example, one’s feelings about death, perceived stability of end-of-life decisions, support from the family and the healthcare system, and perspectives on quality of life have all been found to impact a person’s willingness to engage in ACP.6e8 Differing cultural beliefs and attitudes toward ACP can be barriers or enablers of ACP engagement.9 ACP is founded on respecting the autonomy and wishes of the person and its emphasis on the primacy of the individual comes largely from a Western sociocultural mindset. Hence, barriers may exist to its acceptance in collectivist cultures. The emphasis on family-centered decision making in Asian cultures can render formal procedures such as ACP less relevant.10 In the same vein, filial piety also plays a part in influencing end-of-life planning,11 and family members will quickly take over dominant medical decision-making roles for patients with no advance directives.12 The notion of leaving it up to the family is often the reason proffered against completion of ACP, implying older adults entrust family members to take over decision-making when care issues become a concern. It had been shown that there is a stronger preference for independent decision-making relating to medical decisions in those who do not avoid thoughts of death.13 Some Orientals have a predilection for fatalistic beliefs, particularly that life events are predestined, and tend to avoid taboo subjects such as death. These are barriers to discussions on healthcare preferences and can result in delayed engagement in ACP.14,15 On the other hand, recognizing the benefits of ACP will facilitate its engagement.16 End-of-life care, often perceived as an emotional and financial burden to caregivers,17 can potentially engender disputes among family members.18 Therefore, having clear directives and knowing the wishes of the person with dementia could help reduce this burden. Studies across different ethnic groups have demonstrated that individuals do exercise autonomy in treatment decisions and ACP helps provide a sense of control, hope, and empowerment.19e21 The studies also show the majority hold the viewpoint of rejecting lifesustaining treatments when there is no hope of recovery, seeking instead a pain free and comfortable end with minimal suffering and burden. The desire to maintain autonomy and a good quality of life is one of the key reasons for engagement in ACP.22 Besides personal beliefs, good knowledge and awareness of one’s medical condition facilitates conversations about future care planning, which can be the driving force for ACP.19 Knowledge of dementia among older people has been found to be poor,23 hindering the seeking of treatment and intervention.24 In people with dementia, this is further complicated by their cognitive deficits, which can affect awareness of their condition and efforts to adjust to the disease.25 A systemic review has suggested that the involvement of people with early cognitive impairment (ECI) in ACP decreases with lower scores on the Mini-Mental State Examination (MMSE).2 This study aimed to examine the willingness of people with ECI to engage in ACP by considering potential barriers and benefits, as well as explore factors, both sociodemographic and clinical, that predict willingness to engage in ACP.
Methods Patients A total of 98 patients were recruited from the memory clinic of a tertiary hospital in Singapore. The inclusion criteria included a diagnosis of ECI, comprising of mild cognitive impairment (MCI) or
mild dementia, spoken literacy in English, Mandarin, or Mandarin dialects and age 55 years. Dementia diagnosis was made using the Diagnostic and Statistical Manual of Mental Disorders, 4th Edition26 criteria, and the severity of the disease was assessed with the use of Clinical Dementia Rating scale. MCI diagnosis was based on the consensus criteria.27 Procedures All patients underwent a set of standard clinical evaluations including assessment of their (1) cognitive status [Frontal Assessment Battery (FAB)28 and MMSE],29 (2) disease severity status (Clinical Dementia Rating), and (3) awareness of their disease (Clinical Insight Rating Scale) independently.30,31 They were also administered an adapted version of the Knowledge of Alzheimer Disease,32 a 10-item scale specifically examining the knowledge on the nature, consequences, and cure of dementia to explore their understanding of dementia. Sociodemographic information including gender, years of education, race, age, marital status, and number of children was also captured. The patients were engaged in a 45-minute ACP dialectic education session with a medical social worker trained in counseling and ACP, who assessed their willingness to engage in ACP (planning for their personal welfare, family, property, and assets). They were interviewed on their beliefs and attitudes toward ACP using a 9-item Modified Perceived Barriers Scale (Appendix 1) and a 5-item Modified Perceived Benefits Scale (Appendix 2). The original versions of these scales, developed by Ko,33 were adapted to include culturally appropriate items such as fatalistic beliefs toward death and illness, and belief in family support. They are scored on a 4-point Likert scale where higher scores indicated higher levels of perceived barriers/ benefits to the completion of ACP. Patients were screened for anxiety (Short-form Geriatric Anxiety Inventory)34 and depression (Geriatric Depression Scale 5-Item).35 In view of the patients’ cognitive difficulties and possible low literacy levels, face to face interviews were conducted in either English or Mandarin, according to the preference of the patient. Mandarin equivalents of instruments were used when appropriate. As such, the English versions were first translated into Mandarin, followed by independent back-translation. A comparison between the original and the back-translated versions was made, and discussions among team members on the equivalence of the items helped confirm the final versions of the translated Mandarin instruments. The study was approved by the institutional review board of the hospital. Data Analysis Descriptive statistics were first used to explore the readiness of patients to engage in ACP and their responses to the individual items within the Perceived Barriers and Benefit scales. Repeated measures analysis of variance (ANOVA) examined the pattern of responses within the subcategories of perceived barriers and benefit. As these scales had been modified from the original versions, exploratory factor analysis with varimax (orthogonal) rotation was performed. Patients were then categorized into 2 groups, namely those who were not ready to make any ACP plans, and those who were intending to or had already made ACP plans. Univariate analysis determined significant differences between the 2 groups based on their responses to the perceived barriers and benefits of ACP, as well as sociodemographic and clinical variables. A logistic regression model examined the predictive power of significant factors derived from univariate analyses on willingness to engage in ACP.
S.Y. Tay et al. / JAMDA xxx (2015) 1e6
Results One patient out of the 98 recruited had difficulty providing responses to the questions (benefits and barriers) posed and had to be excluded. The sample comprised a fairly even distribution of males (47.4%) and females (52.6%) with mostly patients with MCI (30.9%) and Alzheimer disease (44.3%). Mean age of the sample was 73.6 6.7 with 7.7 5.1 years of education, married subjects (62.9%), and Chinese (90.7%) made up the majority. Average MMSE and FAB scores were 21.1 3.3 and 12.2 3.3, respectively.
Willingness to Engage in ACP Overall, 46.4% (n ¼ 45) of the sample was not ready to initiate ACP, while 42.3% (n ¼ 41) was intending to start soon, and 11.6% (n ¼ 11) had already made their plans.
Perceived Benefits and Barriers The mean score for perceived benefits was 12.7 (SD ¼ 3.2). Repeated measures ANOVA with Greenhouse-Geisser adjustment indicated that the ratings on different items of the scale were not significantly different and were comparable in their means and standard deviations, F (4, 80) ¼ 0.480, MSE ¼ 0.135, P ¼ .69. The mean score for perceived barriers was 22.9 (SD ¼ 3.2). Using repeated measures ANOVA and Huynh-Feldt’s adjustment for the F ratios revealed significantly different mean scores across the different items: F(53, 262) ¼ 19.53, MSE ¼ 0.43, P < .001, h2part ¼ .126. The barrier with the highest score was item 1 e “it is difficult for me to do ACP because I don’t think about such issues very much” (M ¼ 2.95) and post-hoc analysis indicated that this rating was significantly higher than 6 other items. In contrast, the item with the lowest score was item 5 e “it is difficult for me to do ACP because my family will not support me doing this” (M ¼ 2.20), where the mean rating was significantly lower than 4 other items.
Factor Analysisd9-Item Perceived Barriers Scale Principal component analysis was used to identify the factors underlying the perceived barriers scale and well-accepted criteria were used to determine the number of factors to be retained. Based on the Kaiser-Guttman rule where only factors with eigenvalue of >1 were retained, 3 factors were derived where the first factor explained 30.21%, the second factor 19.10%, and the third factor 11.82% of the variance, respectively. The 3-factor solution, which explained 61.13% of the variance, was consistent with result from the scree plot, where there was a “leveling off” of eigenvalues after 3 factors. We opted for the orthogonal (varimax) instead of oblique rotation as we could not assume the factors were correlated in this exploratory work and it provided a well-defined factor structure with all items having primary loadings >.40. The factor loading matrix for this final solution is presented in Table 1. Three items loaded on factor 1. These items conveyed denial of the possibility of future decisional incapacity and avoidance of making plans for that eventuality. This factor is labeled avoidance coping. Four items loaded on a second factor that communicated belief that one can carry on with daily living with no immediacy to make future plans. This is labeled passive coping. The 2 items that loaded onto factor 3 pertained to procrastination in making future care plans. These items were “having many other concerns” and “being unsure about the future.” This factor is labeled “procrastinating.”
3
Table 1 Factor Loadings Based on Principal Component Analysis With Varimax Rotation for 9-Item Perceived Barriers Scale (N ¼ 97) Items
(1) Avoidance (2) Passive (3) Procrastinating Coping Coping
Belief one can continue to make plans Think one will get better Do not own bank account or manage finances Don’t think about such issues Family not supportive Family will take care of one Future is fated Many other important concerns May change plans in future
.846
.055
.102
.665 .752
.311 .050
.286 .019
.051 .019 .445 .219 .259
.738 .599 .526 .786 .114
.028 .138 .379 .170 .775
.015
.111
.807
Note: The grey area refers to the group of items that loaded onto each factor (1), (2) and (3).
Factor Analysisd5-Item Perceived Barriers Scale Exploratory factor analysis showed that this scale was unidimensional, thus, no further analysis was necessary (Table 2). Relationship Between Sociodemographic Factors, Clinical Variables, and Willingness to Engage in ACP The group that was intending to or had made all ACP plans scored higher in the FAB (t ¼ 3.63, P < .0001) and had received higher education (t ¼ 2.11, P ¼ .038). They also scored lower on the barriers scale (t ¼ 2.47, P ¼ .015), in particular on the passive coping items (t ¼ 2.83, P ¼ .006). None of the other sociodemographic, clinical, cognitive, and mood variables were significantly different between the 2 groups. Table 3 summarizes these findings. Predictors of Willingness to Engage in ACP Logistic regression revealed that the model that incorporated the factors education, FAB, and passive coping as a whole significantly differentiated between those not willing to engage in ACP from those were keen (c2 ¼ 18.995, P ¼ .001 with df ¼ 4). The Wald criterion showed that FAB (P ¼ .016) and passive coping (P ¼ .023) contributed significantly to prediction. Discussion We examined perception toward ACP and predictors of ACP engagement in Singaporeans with ECI and found that 53.9% were ready to engage in the process, higher than the 33%e37% completion rate reported in an American congress report4 and a 5-year follow-up study of American patients with cognitive impairments.6 Studies have shown better ACP completion rates through interactive interventions.36,37 The interactive manner of sharing information Table 2 Factor Loadings Based on a Principal Component Analysis for 5-Item Perceived Barriers Scale (N ¼ 97) Items ACP makes it easier for family when I have difficulties making decisions in the future ACP will help those around me know what my wishes are for medical treatment Future can be more comfortable with ACP ACP helps me receive the type of care I desire ACP helps those around me know my desire for management of property and asserts
.816 .888 .863 .808 .830
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Table 3 Univariate Analysis for Factors Associated With Willingness to Engage in ACP Variables
Not Ready (n ¼ 45) Mean (SD)
Intending to Start/Made all Plans (n ¼ 52) Mean (SD)
t Value
P Value (2-Tailed)
Age Number of children Education Global Clinical Dementia Rating MMSE FAB Clinical Insight Rating Alzheimer Disease Knowledge total score Perceived Barriers total score Avoidant coping Passive coping Procrastinating Perceived Benefits total score Geriatric Anxiety Inventory Geriatric Depression Scale 5-Item
74.56 4.22 6.11 .845 21.11 10.9 2.39 5.56 23.7 7.71 11.22 4.78 12.0 .73 .79
72.87 3.92 8.29 .706 22.13 13.3 1.78 5.73 22.17 7.23 10.21 4.73 13.3 1.29 1.00
1.241 .602 2.11 1.29 1.52 3.63 1.48 .549 2.47 1.48 2.83 .217 2.04 1.90 .997
.218 .548 .038* .199 .13 <.001* .143 .584 .015* .143 .006* .829 .050 .061 .322
(5.95) (2.70) (5.07) (.711) (3.55) (3.33) (2.12) (1.53) (2.58) (1.62) (1.81) (1.18) (3.43) (1.074) (.87)
(7.26) (2.20) (5.00) (.268) (3.05) (2.94) (1.86) (1.60) (3.42) (1.58) (1.71) (.95) (2.82) (1.76) (1.13)
*P < .05.
through one to one engagement with the medical social worker could have promoted receptiveness and helped increase awareness and understanding of the importance of ACP. However, it must be emphasized that willingness to engage in ACP is not equivalent to eventual ACP completion given that it is a multistep process subjected to logistical, procedural, and administrative barriers. Studies examining the perspectives of Asian elderly on ACP have found that while they are generally receptive to the idea of ACP, the majority are diffident about formal documentation.14,20 As the ACP process involves several stages, patients could remain in stages where they are exploring their own values and future treatment wishes, and discussing with their loved one without eventually documenting their plans formally. Given that ACP is not one-off, continued discussions and reviews over time would be necessary.38 Discrepant ratings across the Modified Perceived Barriers Scale suggest that there were some barriers that were especially important in influencing engagement in ACP. The main barrier endorsed was “it is difficult for me to do ACP because I don’t think about such issues very much,” a recurrent theme in the findings of other studies in Asian populations.37,39 Extant studies have also shown poor awareness and insufficient knowledge about ACP, with participants erroneously believing they are not suited for it40 or that huge extra costs are involved.41 As majority of our patients had only recently been diagnosed and initiated to the ACP discussion for the first time, not actively thinking about the advance care issues is not surprising. Our patients lacked knowledge on dementia and awareness into the consequences and progressive nature of the disease based on their ratings in dementia knowledge. We also found a positive relationship between higher education and readiness for ACP engagement. Better education has been associated with greater desire to be involved in personal medical decision-making, better knowledge, and understanding of ACP as well as trust in the health care system,42 which can explain our findings. The barriers that showed the greatest impact on ACP engagement were related to items conveying passivity toward the future care planning, wherein patients expressed low self-efficacy with regards to ACP and delegated decision making to the family. This is characteristic of the Asian culture, which emphasizes the importance of the family in collectively making major decisions involving its members and an orientation toward external control beliefs such the influence of others, luck, and fate. In the same vein, filial piety may also have contributed to the passivity of seniors in the planning for their future as they entrust these decisions to their children. Interestingly, executive functioning but not overall cognitive ability influenced willingness for ACP. Executive function has been
shown to be associated with decision making processes such as capacity in giving consent, appreciating consequences of one’s decision, and reasoning.43,44 Executive function can be enhanced through education,45 thus, it is possible that increased education mediates its effects through higher executive function, enabling patients to understand the value of ACP and plan better for the future. Conversely, negative relationships have been previously found between levels of executive functioning and apathy,46 which could be a contributory factor for passivity toward ACP in persons with ECI. Given the high levels of passivity in our patients with ECI, an important first step should entail initiating education and discussions on ACP early to increase awareness and understanding of its importance. Studies in the Asian setting have shown increased rates of ACP completion through efforts at education,37 which may span several sessions. Interventions that involve completion of ACP through direct patient-healthcare professional interactions over multiple visits have been found to be very successful.47 Drawing on the results of our study and consistent with the findings of a recent study,48 the involvement of family members in ACP discussions is likely to play a pivotal role in facilitating ACP. Some limitations in this study need to be mentioned. As there was a lack of pre-existing language appropriate measures developed specifically for our patients, translation and transcultural adaptation had to be performed. Although content validity was established with professionals steeped in the care of people with ECI, in our attempt to narrow down the issues of relevance into singular items on the scale, we may not have adequately covered the full range of issues of importance to ACP. In addition, the predictive factors for ACP engagement were derived from a cross-sectional analysis. Future longitudinal research will be necessary to explore the decision making process over time and confirm if these factors remain significant. Conclusions ACP is an essential part of holistic care for people with ECI. This study has revealed 3 main barriers to ACP, namely, not having given much thought to the matter, adopting a passive attitude and dependency on the family for making future care decisions. Better education and higher executive function, both instrumental in a person’s ability to acquire knowledge and understand information, predict keenness to engage in ACP. Initiating ACP discussions early, increasing efforts at education, and providing tailored information would allow more time and opportunities to engage and understand patients who have not given
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much consideration to making advance care plans. Early intervention is also important to capitalize on the narrow window of opportunity, expressly for those with less education and lower executive function, before further cognitive decline renders them unable to meaningfully participate in ACP anymore. Finally, involving family members is important to help patients, particularly those who are more passive and delegate decision-making to their families, to facilitate completion of advance care plans.
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23. Purandare N, Luthra V, Swarbrick C, Burns A. Knowledge of dementia among South Asian (Indian) older people in Manchester, UK. Int J Geriatr Psych 2007; 22:777e781. 24. Tan WJ, Hong S, Luo N, et al. The lasy’s public understanding and perception of dementia in a developed Asian nation. Dement Geriatr Cogn Dis Extra 2012;2: 433e444. 25. Clare L. Developing awareness about awareness in early-stage dementia: The role of psychosocial factors. Dementia 2002;1:295e392. 26. American Psychiatric Association. Diagnostic and statistical manual of mental disorders. text rev. 4th ed. Washington, DC: Author; 2000. 27. Winblad B, Palmer K, Kivipelto M, et al. Mild cognitive impairment e beyond controversies, towards a consensus: Report of the International Working Group on Mild Cognitive Impairment. J Intern Med 2004;256:240e246. 28. Dubois B, Slachevsky A, Litvan I, et al. A frontal assessment battery at bedside. Neurology 2000;55:1621e1626. 29. Folstein MF, Folstein SE, McHugh PR. “Mini-mental state.” A practical method for grading the cognitive state of patients for the clinician. J Psychiatr Res 1975; 12:189e198. 30. Ott BR, Fogel BS. Measurement of depression in dementia: Self vs clinical rating. Int J Geriatr Psychiatry 1992;7:899e904. 31. Ott BR, Lafleche G, Whelihan WM, et al. Impaired awareness of deficits in Alzheimer Disease. Alzheimer Dis Assoc Disord 1996;10:68e76. 32. Ayalon L, Arean PA. Knowledge of Alzheimer’s disease in four ethnic groups of older adults. Int J Geriatr Psychiatry 2004;19:51e57. 33. Ko E. Advance care planning with Korean American and non-Hispanic white older adults. PhD dissertation, University of Kansas, Kansas, 2008. Available at: ProQuest Digital Dissertation Database. Available at: http://libportal.nus.edu. sg/frontend/databases-view?byTitle¼BrowseþByþTitle&spacer¼%3E&start Char¼p&cid¼62180. Accessed September 17, 2010. 34. Byrne GJ, Pachana NA. Development and validation of a short form of the Geriatric Anxiety InventoryeThe GAI-SF. Int Psychogeriatr 2011;23:125e131. 35. Hoyl MT, Alessi CA, Harker JO, et al. Development and testing of a five-item version of the Geriatric Depression Scale. J Am Geriatr Soc 1999;47:873e878. 36. Bravo G, Dubois MF, Wagneur B. Assessing the effectiveness of interventions to promote advance directives among older adults: A systematic review and multi-level analysis. Soc Sci Med 2008;67:1122e1132. 37. Chu LW, Luk JK, Hui E, et al. Advance directive and end-of-life care preferences among Chinese nursing home residents in Hong Kong. J Am Med Dir Assoc 2011;12:143e152. 38. Seymour J, Gott M, Bellamy G, et al. Planning for the end of life: The views of older people about advance care statements. Soc Sci Med 2004;59:57e68. 39. Low JA, Ng WC, Yap KB, Chan KM. End-of-life issues-preferences and choices of a group of elderly Chinese subjects attending a day care centre in Singapore. Ann Acad Med Singapore 2000;29:50e56. 40. High DM. Advance directives and the elderly: A study of intervention strategies to increase use. Gerontologist 1993;33:342e349. 41. Hsiung YY. Chinese American’s readiness for Advance Care Planning. Ph.D. dissertation, University of Illinois, Chicago, 2011. Available at: ProQuest Digital Dissertation Database. Available at: http://indigo.uic.edu/bitstream/handle/ 10027/8927/Hsiung_Yifang.pdf?sequence¼1. Accessed October 31, 2014. 42. Caralis PV, Davis B, Wright K, Marcial E. The influence of ethnicity and race on attitudes toward advance directives, life-prolonging treatments, and euthanasia. J Clin Ethics 1993;4:155e165. 43. Marson DC, Chatterjee A, Ingram KK, et al. Toward a neurologic model of competency: Cognitive predictors of capacity to consent in Alzheimer’s disease using three different legal standards. Neurology 1996;46:666e672. 44. Schillerstrom JE, Rickenbacker D, Joshi KG, et al. Executive function and capacity to consent to a noninvasive research protocol. Am J Geriatr Psychiatry 2007;15:159e162. 45. Jurado MB, Rosseli M. The elusive nature of executive functions: A review of our current understanding. Neuropsychol Rev 2007;17:213e233. 46. George M, Whitfield T, Walker Z. Association of apathy with frontal lobe dysfunction in amnestic mild cognitive impairment and Alzheimer’s Disease. J Neurol Neurosurg Psychiatry 2013;84:e1. 47. Ramsaroop SD, Reid MC, Adelman RD. Completing an advanced directive in the primary care setting: What do we need for success? J Am Geriatr Soc 2007;55: 277e283. 48. Wong SY, Lo SH, Chan CH, et al. Is it feasible to discuss an advanced directive with a Chinese patient with advanced malignancy? A prospective cohort study. Hong Kong Med J 2012;18:178e185.
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Appendix Appendix 1 Modified Perceived Barriers Scale Perceived Barriers
Strongly Disagree
Disagree
Agree
Strongly Agree
1. 2. 3. 4.
1 1 1 1
2 2 2 2
3 3 3 3
4 4 4 4
1 1 1
2 2 2
3 3 3
4 4 4
1
2
3
4
1
2
3
4
It is difficult for me to do advance care planning because I don’t think about such issues very much. It is difficult for me to do advance care planning because I have many other important concerns. It is difficult for me to do advance care planning because I may change my plans in the future. I do not need to engage in advance care planning because I believe that I can continue to make decisions for myself for a long time to come. 5. It is difficult for me to do advance care planning because my family will not support me doing this. 6. I do not need to engage in advance care planning because I think I will get better. 7. I do not need to engage in advance care planning because my family will take care of me when I cannot decide for myself. 8. I do not need to engage in advance care planning because whatever happens in future is fated and cannot be changed. 9. I do not need to engage in advance care planning because I do not own a bank account or manage my own finances.
Appendix 2 Modified Perceived Benefits Scale Perceived Benefits
Strongly Disagree
Disagree
Agree
Strongly Agree
1. Advance care planning will benefit my family by making it easier for them when I have difficulties making decisions in the future. 2. Advance care planning will help those around me to know what my wishes are for medical treatment. 3. My future can be more comfortable if I have advance care planning. 4. Advance care planning would help me receive the type of care I would like to have. 5. Advance care planning will help those around me know how I want my property and assets to be managed.
1
2
3
4
1 1 1 1
2 2 2 2
3 3 3 3
4 4 4 4
JAMDA journal homepage: www.jamda.com
Original Study
Education and Executive Function Mediate Engagement in Advance Care Planning in Early Cognitive Impairment Sze Yan Tay MPsych a, John Davison DClinPsy b, Ng Chong Jin MRCP c, Yap Lin Kiat Philip MRCP c, * a
Department of Neurology, Singapore General Hospital, Singapore Department of Psychology, National University of Singapore, Singapore c Department of Geriatric Medicine, Khoo Teck Puat Hospital, Singapore b
a b s t r a c t Keywords: Advanced care planning (ACP) mild cognitive impairment early dementia education executive function
Background: Advance care planning (ACP) is an important component to holistic care for people with early cognitive impairment (ECI) who are generally still mentally capable of making rational decisions. This study explores the willingness of people with ECI to engage in ACP and how clinical and behavioral variables shape their decisions. Methods: Ninety-eight persons with ECI (mild cognitive impairment or early dementia, Clinical Dementia Rating ¼ 0.5/1.0) and assessed to have adequate insight (Clinical Insight Rating Scale) underwent an ACP information session. They were assessed on their knowledge of dementia (Knowledge of Alzheimer Disease) and willingness to engage in ACP, and were interviewed on their beliefs and attitudes toward ACP (Perceived Barriers and Benefits Scale to ACP). Univariate analysis and logistic regression identified factors that predicted persons willing or unwilling to engage in ACP based on their responses to the perceived barriers and benefits of ACP as well as sociodemographic and clinical variables. Results: Fifty-two persons (54%) were keen on ACP. On univariate analysis, persons with better executive function [Frontal Assessment Battery (FAB)] (t ¼ 3.63, P < .0001), were more educated (t ¼ 2.11, P ¼ .038) and had lower barriers to ACP (t ¼ 2.47, P ¼ .015), particularly less “passive coping” (t ¼ 2.83, P ¼ .006), were more keen on ACP. Logistic regression revealed that the combined predictive model comprising FAB, education, and passive coping as a whole reliably differentiated those unwilling to engage in ACP from those who were willing (c2 ¼ 18.995, P ¼ .001 with df ¼ 4). Wald criterion showed that FAB (P ¼ .016) and passive coping (P ¼ .023) contributed most to prediction. Conclusions: Better education and executive function predict willingness to engage in ACP, and these factors are instrumental in a person’s ability to acquire knowledge and process information. Initiating ACP discussions early, increasing efforts at education, and providing tailored information are important interventions that facilitate completion of ACP. Ó 2015 AMDA e The Society for Post-Acute and Long-Term Care Medicine.
Advance care planning (ACP) is an essential component of holistic care for people with early dementia when individuals are generally still mentally capable of making rational decisions. ACP involves thinking about one’s preferences and goals of care and communicating them to the person who will be making decisions on one’s behalf such as a loved one, proxy decision maker, or healthcare provider.1 A recent review of ACP in dementia indicated that patients with mild dementia are capable of being involved in ACP, and concerns with regards to adverse reactions to ACP conversations have been unfounded.2 As people with dementia can be in good physical
The authors declare no conflicts of interest. * Address correspondence to Yap Lin Kiat Philip, Department of Geriatric Medicine, Khoo Teck Puat Hospital, 90 Yishun Central, Singapore 768828. E-mail address: [email protected] (Y.L.K. Philip). http://dx.doi.org/10.1016/j.jamda.2015.05.014 1525-8610/Ó 2015 AMDA e The Society for Post-Acute and Long-Term Care Medicine.
health for relatively long periods of time despite prolonged periods of mental incapacity, planning of their long-time health and social care needs in addition to end-of-life care decisions is necessary. Good long-term care planning also helps prepare family members who are often plagued by guilt, feelings of failure, and the strain of care in the later stages of the disease, and are frequently unprepared to make effective decisions for the patient.3 The undertaking of ACP by the person with dementia is advocated to reduce this burden. However, the rates of ACP completion around the world are still modest4 and may account in part for the inadequate end-of-life care and symptom management in people with dementia. In a 5-year follow-up study, it was found that despite knowing the risk of future decisional incapacity, only a minority of patients with cognitive impairments went on to complete ACP.5 Understanding the reasons for this poor response is pertinent for policy-planning as well
2
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as for the establishment of effective long-term care plans. Attitudes and beliefs can influence willingness for ACP. For example, one’s feelings about death, perceived stability of end-of-life decisions, support from the family and the healthcare system, and perspectives on quality of life have all been found to impact a person’s willingness to engage in ACP.6e8 Differing cultural beliefs and attitudes toward ACP can be barriers or enablers of ACP engagement.9 ACP is founded on respecting the autonomy and wishes of the person and its emphasis on the primacy of the individual comes largely from a Western sociocultural mindset. Hence, barriers may exist to its acceptance in collectivist cultures. The emphasis on family-centered decision making in Asian cultures can render formal procedures such as ACP less relevant.10 In the same vein, filial piety also plays a part in influencing end-of-life planning,11 and family members will quickly take over dominant medical decision-making roles for patients with no advance directives.12 The notion of leaving it up to the family is often the reason proffered against completion of ACP, implying older adults entrust family members to take over decision-making when care issues become a concern. It had been shown that there is a stronger preference for independent decision-making relating to medical decisions in those who do not avoid thoughts of death.13 Some Orientals have a predilection for fatalistic beliefs, particularly that life events are predestined, and tend to avoid taboo subjects such as death. These are barriers to discussions on healthcare preferences and can result in delayed engagement in ACP.14,15 On the other hand, recognizing the benefits of ACP will facilitate its engagement.16 End-of-life care, often perceived as an emotional and financial burden to caregivers,17 can potentially engender disputes among family members.18 Therefore, having clear directives and knowing the wishes of the person with dementia could help reduce this burden. Studies across different ethnic groups have demonstrated that individuals do exercise autonomy in treatment decisions and ACP helps provide a sense of control, hope, and empowerment.19e21 The studies also show the majority hold the viewpoint of rejecting lifesustaining treatments when there is no hope of recovery, seeking instead a pain free and comfortable end with minimal suffering and burden. The desire to maintain autonomy and a good quality of life is one of the key reasons for engagement in ACP.22 Besides personal beliefs, good knowledge and awareness of one’s medical condition facilitates conversations about future care planning, which can be the driving force for ACP.19 Knowledge of dementia among older people has been found to be poor,23 hindering the seeking of treatment and intervention.24 In people with dementia, this is further complicated by their cognitive deficits, which can affect awareness of their condition and efforts to adjust to the disease.25 A systemic review has suggested that the involvement of people with early cognitive impairment (ECI) in ACP decreases with lower scores on the Mini-Mental State Examination (MMSE).2 This study aimed to examine the willingness of people with ECI to engage in ACP by considering potential barriers and benefits, as well as explore factors, both sociodemographic and clinical, that predict willingness to engage in ACP.
Methods Patients A total of 98 patients were recruited from the memory clinic of a tertiary hospital in Singapore. The inclusion criteria included a diagnosis of ECI, comprising of mild cognitive impairment (MCI) or
mild dementia, spoken literacy in English, Mandarin, or Mandarin dialects and age 55 years. Dementia diagnosis was made using the Diagnostic and Statistical Manual of Mental Disorders, 4th Edition26 criteria, and the severity of the disease was assessed with the use of Clinical Dementia Rating scale. MCI diagnosis was based on the consensus criteria.27 Procedures All patients underwent a set of standard clinical evaluations including assessment of their (1) cognitive status [Frontal Assessment Battery (FAB)28 and MMSE],29 (2) disease severity status (Clinical Dementia Rating), and (3) awareness of their disease (Clinical Insight Rating Scale) independently.30,31 They were also administered an adapted version of the Knowledge of Alzheimer Disease,32 a 10-item scale specifically examining the knowledge on the nature, consequences, and cure of dementia to explore their understanding of dementia. Sociodemographic information including gender, years of education, race, age, marital status, and number of children was also captured. The patients were engaged in a 45-minute ACP dialectic education session with a medical social worker trained in counseling and ACP, who assessed their willingness to engage in ACP (planning for their personal welfare, family, property, and assets). They were interviewed on their beliefs and attitudes toward ACP using a 9-item Modified Perceived Barriers Scale (Appendix 1) and a 5-item Modified Perceived Benefits Scale (Appendix 2). The original versions of these scales, developed by Ko,33 were adapted to include culturally appropriate items such as fatalistic beliefs toward death and illness, and belief in family support. They are scored on a 4-point Likert scale where higher scores indicated higher levels of perceived barriers/ benefits to the completion of ACP. Patients were screened for anxiety (Short-form Geriatric Anxiety Inventory)34 and depression (Geriatric Depression Scale 5-Item).35 In view of the patients’ cognitive difficulties and possible low literacy levels, face to face interviews were conducted in either English or Mandarin, according to the preference of the patient. Mandarin equivalents of instruments were used when appropriate. As such, the English versions were first translated into Mandarin, followed by independent back-translation. A comparison between the original and the back-translated versions was made, and discussions among team members on the equivalence of the items helped confirm the final versions of the translated Mandarin instruments. The study was approved by the institutional review board of the hospital. Data Analysis Descriptive statistics were first used to explore the readiness of patients to engage in ACP and their responses to the individual items within the Perceived Barriers and Benefit scales. Repeated measures analysis of variance (ANOVA) examined the pattern of responses within the subcategories of perceived barriers and benefit. As these scales had been modified from the original versions, exploratory factor analysis with varimax (orthogonal) rotation was performed. Patients were then categorized into 2 groups, namely those who were not ready to make any ACP plans, and those who were intending to or had already made ACP plans. Univariate analysis determined significant differences between the 2 groups based on their responses to the perceived barriers and benefits of ACP, as well as sociodemographic and clinical variables. A logistic regression model examined the predictive power of significant factors derived from univariate analyses on willingness to engage in ACP.
S.Y. Tay et al. / JAMDA xxx (2015) 1e6
Results One patient out of the 98 recruited had difficulty providing responses to the questions (benefits and barriers) posed and had to be excluded. The sample comprised a fairly even distribution of males (47.4%) and females (52.6%) with mostly patients with MCI (30.9%) and Alzheimer disease (44.3%). Mean age of the sample was 73.6 6.7 with 7.7 5.1 years of education, married subjects (62.9%), and Chinese (90.7%) made up the majority. Average MMSE and FAB scores were 21.1 3.3 and 12.2 3.3, respectively.
Willingness to Engage in ACP Overall, 46.4% (n ¼ 45) of the sample was not ready to initiate ACP, while 42.3% (n ¼ 41) was intending to start soon, and 11.6% (n ¼ 11) had already made their plans.
Perceived Benefits and Barriers The mean score for perceived benefits was 12.7 (SD ¼ 3.2). Repeated measures ANOVA with Greenhouse-Geisser adjustment indicated that the ratings on different items of the scale were not significantly different and were comparable in their means and standard deviations, F (4, 80) ¼ 0.480, MSE ¼ 0.135, P ¼ .69. The mean score for perceived barriers was 22.9 (SD ¼ 3.2). Using repeated measures ANOVA and Huynh-Feldt’s adjustment for the F ratios revealed significantly different mean scores across the different items: F(53, 262) ¼ 19.53, MSE ¼ 0.43, P < .001, h2part ¼ .126. The barrier with the highest score was item 1 e “it is difficult for me to do ACP because I don’t think about such issues very much” (M ¼ 2.95) and post-hoc analysis indicated that this rating was significantly higher than 6 other items. In contrast, the item with the lowest score was item 5 e “it is difficult for me to do ACP because my family will not support me doing this” (M ¼ 2.20), where the mean rating was significantly lower than 4 other items.
Factor Analysisd9-Item Perceived Barriers Scale Principal component analysis was used to identify the factors underlying the perceived barriers scale and well-accepted criteria were used to determine the number of factors to be retained. Based on the Kaiser-Guttman rule where only factors with eigenvalue of >1 were retained, 3 factors were derived where the first factor explained 30.21%, the second factor 19.10%, and the third factor 11.82% of the variance, respectively. The 3-factor solution, which explained 61.13% of the variance, was consistent with result from the scree plot, where there was a “leveling off” of eigenvalues after 3 factors. We opted for the orthogonal (varimax) instead of oblique rotation as we could not assume the factors were correlated in this exploratory work and it provided a well-defined factor structure with all items having primary loadings >.40. The factor loading matrix for this final solution is presented in Table 1. Three items loaded on factor 1. These items conveyed denial of the possibility of future decisional incapacity and avoidance of making plans for that eventuality. This factor is labeled avoidance coping. Four items loaded on a second factor that communicated belief that one can carry on with daily living with no immediacy to make future plans. This is labeled passive coping. The 2 items that loaded onto factor 3 pertained to procrastination in making future care plans. These items were “having many other concerns” and “being unsure about the future.” This factor is labeled “procrastinating.”
3
Table 1 Factor Loadings Based on Principal Component Analysis With Varimax Rotation for 9-Item Perceived Barriers Scale (N ¼ 97) Items
(1) Avoidance (2) Passive (3) Procrastinating Coping Coping
Belief one can continue to make plans Think one will get better Do not own bank account or manage finances Don’t think about such issues Family not supportive Family will take care of one Future is fated Many other important concerns May change plans in future
.846
.055
.102
.665 .752
.311 .050
.286 .019
.051 .019 .445 .219 .259
.738 .599 .526 .786 .114
.028 .138 .379 .170 .775
.015
.111
.807
Note: The grey area refers to the group of items that loaded onto each factor (1), (2) and (3).
Factor Analysisd5-Item Perceived Barriers Scale Exploratory factor analysis showed that this scale was unidimensional, thus, no further analysis was necessary (Table 2). Relationship Between Sociodemographic Factors, Clinical Variables, and Willingness to Engage in ACP The group that was intending to or had made all ACP plans scored higher in the FAB (t ¼ 3.63, P < .0001) and had received higher education (t ¼ 2.11, P ¼ .038). They also scored lower on the barriers scale (t ¼ 2.47, P ¼ .015), in particular on the passive coping items (t ¼ 2.83, P ¼ .006). None of the other sociodemographic, clinical, cognitive, and mood variables were significantly different between the 2 groups. Table 3 summarizes these findings. Predictors of Willingness to Engage in ACP Logistic regression revealed that the model that incorporated the factors education, FAB, and passive coping as a whole significantly differentiated between those not willing to engage in ACP from those were keen (c2 ¼ 18.995, P ¼ .001 with df ¼ 4). The Wald criterion showed that FAB (P ¼ .016) and passive coping (P ¼ .023) contributed significantly to prediction. Discussion We examined perception toward ACP and predictors of ACP engagement in Singaporeans with ECI and found that 53.9% were ready to engage in the process, higher than the 33%e37% completion rate reported in an American congress report4 and a 5-year follow-up study of American patients with cognitive impairments.6 Studies have shown better ACP completion rates through interactive interventions.36,37 The interactive manner of sharing information Table 2 Factor Loadings Based on a Principal Component Analysis for 5-Item Perceived Barriers Scale (N ¼ 97) Items ACP makes it easier for family when I have difficulties making decisions in the future ACP will help those around me know what my wishes are for medical treatment Future can be more comfortable with ACP ACP helps me receive the type of care I desire ACP helps those around me know my desire for management of property and asserts
.816 .888 .863 .808 .830
4
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Table 3 Univariate Analysis for Factors Associated With Willingness to Engage in ACP Variables
Not Ready (n ¼ 45) Mean (SD)
Intending to Start/Made all Plans (n ¼ 52) Mean (SD)
t Value
P Value (2-Tailed)
Age Number of children Education Global Clinical Dementia Rating MMSE FAB Clinical Insight Rating Alzheimer Disease Knowledge total score Perceived Barriers total score Avoidant coping Passive coping Procrastinating Perceived Benefits total score Geriatric Anxiety Inventory Geriatric Depression Scale 5-Item
74.56 4.22 6.11 .845 21.11 10.9 2.39 5.56 23.7 7.71 11.22 4.78 12.0 .73 .79
72.87 3.92 8.29 .706 22.13 13.3 1.78 5.73 22.17 7.23 10.21 4.73 13.3 1.29 1.00
1.241 .602 2.11 1.29 1.52 3.63 1.48 .549 2.47 1.48 2.83 .217 2.04 1.90 .997
.218 .548 .038* .199 .13 <.001* .143 .584 .015* .143 .006* .829 .050 .061 .322
(5.95) (2.70) (5.07) (.711) (3.55) (3.33) (2.12) (1.53) (2.58) (1.62) (1.81) (1.18) (3.43) (1.074) (.87)
(7.26) (2.20) (5.00) (.268) (3.05) (2.94) (1.86) (1.60) (3.42) (1.58) (1.71) (.95) (2.82) (1.76) (1.13)
*P < .05.
through one to one engagement with the medical social worker could have promoted receptiveness and helped increase awareness and understanding of the importance of ACP. However, it must be emphasized that willingness to engage in ACP is not equivalent to eventual ACP completion given that it is a multistep process subjected to logistical, procedural, and administrative barriers. Studies examining the perspectives of Asian elderly on ACP have found that while they are generally receptive to the idea of ACP, the majority are diffident about formal documentation.14,20 As the ACP process involves several stages, patients could remain in stages where they are exploring their own values and future treatment wishes, and discussing with their loved one without eventually documenting their plans formally. Given that ACP is not one-off, continued discussions and reviews over time would be necessary.38 Discrepant ratings across the Modified Perceived Barriers Scale suggest that there were some barriers that were especially important in influencing engagement in ACP. The main barrier endorsed was “it is difficult for me to do ACP because I don’t think about such issues very much,” a recurrent theme in the findings of other studies in Asian populations.37,39 Extant studies have also shown poor awareness and insufficient knowledge about ACP, with participants erroneously believing they are not suited for it40 or that huge extra costs are involved.41 As majority of our patients had only recently been diagnosed and initiated to the ACP discussion for the first time, not actively thinking about the advance care issues is not surprising. Our patients lacked knowledge on dementia and awareness into the consequences and progressive nature of the disease based on their ratings in dementia knowledge. We also found a positive relationship between higher education and readiness for ACP engagement. Better education has been associated with greater desire to be involved in personal medical decision-making, better knowledge, and understanding of ACP as well as trust in the health care system,42 which can explain our findings. The barriers that showed the greatest impact on ACP engagement were related to items conveying passivity toward the future care planning, wherein patients expressed low self-efficacy with regards to ACP and delegated decision making to the family. This is characteristic of the Asian culture, which emphasizes the importance of the family in collectively making major decisions involving its members and an orientation toward external control beliefs such the influence of others, luck, and fate. In the same vein, filial piety may also have contributed to the passivity of seniors in the planning for their future as they entrust these decisions to their children. Interestingly, executive functioning but not overall cognitive ability influenced willingness for ACP. Executive function has been
shown to be associated with decision making processes such as capacity in giving consent, appreciating consequences of one’s decision, and reasoning.43,44 Executive function can be enhanced through education,45 thus, it is possible that increased education mediates its effects through higher executive function, enabling patients to understand the value of ACP and plan better for the future. Conversely, negative relationships have been previously found between levels of executive functioning and apathy,46 which could be a contributory factor for passivity toward ACP in persons with ECI. Given the high levels of passivity in our patients with ECI, an important first step should entail initiating education and discussions on ACP early to increase awareness and understanding of its importance. Studies in the Asian setting have shown increased rates of ACP completion through efforts at education,37 which may span several sessions. Interventions that involve completion of ACP through direct patient-healthcare professional interactions over multiple visits have been found to be very successful.47 Drawing on the results of our study and consistent with the findings of a recent study,48 the involvement of family members in ACP discussions is likely to play a pivotal role in facilitating ACP. Some limitations in this study need to be mentioned. As there was a lack of pre-existing language appropriate measures developed specifically for our patients, translation and transcultural adaptation had to be performed. Although content validity was established with professionals steeped in the care of people with ECI, in our attempt to narrow down the issues of relevance into singular items on the scale, we may not have adequately covered the full range of issues of importance to ACP. In addition, the predictive factors for ACP engagement were derived from a cross-sectional analysis. Future longitudinal research will be necessary to explore the decision making process over time and confirm if these factors remain significant. Conclusions ACP is an essential part of holistic care for people with ECI. This study has revealed 3 main barriers to ACP, namely, not having given much thought to the matter, adopting a passive attitude and dependency on the family for making future care decisions. Better education and higher executive function, both instrumental in a person’s ability to acquire knowledge and understand information, predict keenness to engage in ACP. Initiating ACP discussions early, increasing efforts at education, and providing tailored information would allow more time and opportunities to engage and understand patients who have not given
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much consideration to making advance care plans. Early intervention is also important to capitalize on the narrow window of opportunity, expressly for those with less education and lower executive function, before further cognitive decline renders them unable to meaningfully participate in ACP anymore. Finally, involving family members is important to help patients, particularly those who are more passive and delegate decision-making to their families, to facilitate completion of advance care plans.
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23. Purandare N, Luthra V, Swarbrick C, Burns A. Knowledge of dementia among South Asian (Indian) older people in Manchester, UK. Int J Geriatr Psych 2007; 22:777e781. 24. Tan WJ, Hong S, Luo N, et al. The lasy’s public understanding and perception of dementia in a developed Asian nation. Dement Geriatr Cogn Dis Extra 2012;2: 433e444. 25. Clare L. Developing awareness about awareness in early-stage dementia: The role of psychosocial factors. Dementia 2002;1:295e392. 26. American Psychiatric Association. Diagnostic and statistical manual of mental disorders. text rev. 4th ed. Washington, DC: Author; 2000. 27. Winblad B, Palmer K, Kivipelto M, et al. Mild cognitive impairment e beyond controversies, towards a consensus: Report of the International Working Group on Mild Cognitive Impairment. J Intern Med 2004;256:240e246. 28. Dubois B, Slachevsky A, Litvan I, et al. A frontal assessment battery at bedside. Neurology 2000;55:1621e1626. 29. Folstein MF, Folstein SE, McHugh PR. “Mini-mental state.” A practical method for grading the cognitive state of patients for the clinician. J Psychiatr Res 1975; 12:189e198. 30. Ott BR, Fogel BS. Measurement of depression in dementia: Self vs clinical rating. Int J Geriatr Psychiatry 1992;7:899e904. 31. Ott BR, Lafleche G, Whelihan WM, et al. Impaired awareness of deficits in Alzheimer Disease. Alzheimer Dis Assoc Disord 1996;10:68e76. 32. Ayalon L, Arean PA. Knowledge of Alzheimer’s disease in four ethnic groups of older adults. Int J Geriatr Psychiatry 2004;19:51e57. 33. Ko E. Advance care planning with Korean American and non-Hispanic white older adults. PhD dissertation, University of Kansas, Kansas, 2008. Available at: ProQuest Digital Dissertation Database. Available at: http://libportal.nus.edu. sg/frontend/databases-view?byTitle¼BrowseþByþTitle&spacer¼%3E&start Char¼p&cid¼62180. Accessed September 17, 2010. 34. Byrne GJ, Pachana NA. Development and validation of a short form of the Geriatric Anxiety InventoryeThe GAI-SF. Int Psychogeriatr 2011;23:125e131. 35. Hoyl MT, Alessi CA, Harker JO, et al. Development and testing of a five-item version of the Geriatric Depression Scale. J Am Geriatr Soc 1999;47:873e878. 36. Bravo G, Dubois MF, Wagneur B. Assessing the effectiveness of interventions to promote advance directives among older adults: A systematic review and multi-level analysis. Soc Sci Med 2008;67:1122e1132. 37. Chu LW, Luk JK, Hui E, et al. Advance directive and end-of-life care preferences among Chinese nursing home residents in Hong Kong. J Am Med Dir Assoc 2011;12:143e152. 38. Seymour J, Gott M, Bellamy G, et al. Planning for the end of life: The views of older people about advance care statements. Soc Sci Med 2004;59:57e68. 39. Low JA, Ng WC, Yap KB, Chan KM. End-of-life issues-preferences and choices of a group of elderly Chinese subjects attending a day care centre in Singapore. Ann Acad Med Singapore 2000;29:50e56. 40. High DM. Advance directives and the elderly: A study of intervention strategies to increase use. Gerontologist 1993;33:342e349. 41. Hsiung YY. Chinese American’s readiness for Advance Care Planning. Ph.D. dissertation, University of Illinois, Chicago, 2011. Available at: ProQuest Digital Dissertation Database. Available at: http://indigo.uic.edu/bitstream/handle/ 10027/8927/Hsiung_Yifang.pdf?sequence¼1. Accessed October 31, 2014. 42. Caralis PV, Davis B, Wright K, Marcial E. The influence of ethnicity and race on attitudes toward advance directives, life-prolonging treatments, and euthanasia. J Clin Ethics 1993;4:155e165. 43. Marson DC, Chatterjee A, Ingram KK, et al. Toward a neurologic model of competency: Cognitive predictors of capacity to consent in Alzheimer’s disease using three different legal standards. Neurology 1996;46:666e672. 44. Schillerstrom JE, Rickenbacker D, Joshi KG, et al. Executive function and capacity to consent to a noninvasive research protocol. Am J Geriatr Psychiatry 2007;15:159e162. 45. Jurado MB, Rosseli M. The elusive nature of executive functions: A review of our current understanding. Neuropsychol Rev 2007;17:213e233. 46. George M, Whitfield T, Walker Z. Association of apathy with frontal lobe dysfunction in amnestic mild cognitive impairment and Alzheimer’s Disease. J Neurol Neurosurg Psychiatry 2013;84:e1. 47. Ramsaroop SD, Reid MC, Adelman RD. Completing an advanced directive in the primary care setting: What do we need for success? J Am Geriatr Soc 2007;55: 277e283. 48. Wong SY, Lo SH, Chan CH, et al. Is it feasible to discuss an advanced directive with a Chinese patient with advanced malignancy? A prospective cohort study. Hong Kong Med J 2012;18:178e185.
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Appendix Appendix 1 Modified Perceived Barriers Scale Perceived Barriers
Strongly Disagree
Disagree
Agree
Strongly Agree
1. 2. 3. 4.
1 1 1 1
2 2 2 2
3 3 3 3
4 4 4 4
1 1 1
2 2 2
3 3 3
4 4 4
1
2
3
4
1
2
3
4
It is difficult for me to do advance care planning because I don’t think about such issues very much. It is difficult for me to do advance care planning because I have many other important concerns. It is difficult for me to do advance care planning because I may change my plans in the future. I do not need to engage in advance care planning because I believe that I can continue to make decisions for myself for a long time to come. 5. It is difficult for me to do advance care planning because my family will not support me doing this. 6. I do not need to engage in advance care planning because I think I will get better. 7. I do not need to engage in advance care planning because my family will take care of me when I cannot decide for myself. 8. I do not need to engage in advance care planning because whatever happens in future is fated and cannot be changed. 9. I do not need to engage in advance care planning because I do not own a bank account or manage my own finances.
Appendix 2 Modified Perceived Benefits Scale Perceived Benefits
Strongly Disagree
Disagree
Agree
Strongly Agree
1. Advance care planning will benefit my family by making it easier for them when I have difficulties making decisions in the future. 2. Advance care planning will help those around me to know what my wishes are for medical treatment. 3. My future can be more comfortable if I have advance care planning. 4. Advance care planning would help me receive the type of care I would like to have. 5. Advance care planning will help those around me know how I want my property and assets to be managed.
1
2
3
4
1 1 1 1
2 2 2 2
3 3 3 3
4 4 4 4