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
2
S.Y. Tay et al. / JAMDA xxx (2015) 1e6
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
S.Y. Tay et al. / JAMDA xxx (2015) 1e6
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
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
S.Y. Tay et al. / JAMDA xxx (2015) 1e6
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
S.Y. Tay et al. / JAMDA xxx (2015) 1e6
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
