British Journal of Learning Disabilities The Official Journal of the British Institute of Learning Disabilities ORIGINAL ARTICLE The utility of the Montreal Cognitive Assessment as a mental capacity assessment tool for patients with a learning disability Daniel Edge, Adenekan Oyefeso, Carys Evans and Amber Evans, Department of Psychology and Therapies, Jeesal Cawston Park, Alysham Road, Norfolk, NR10 4JD, UK (E-mail: [email protected]) Received 3 July 2014; Accepted 28 October 2015 Accessible summary • Accurate assessment of a patient’s mental capacity is important, yet out of the • • Abstract clinical assessments currently available, there does not appear to be sufficient accessible tools suitable for people with a learning disability. Incorrect assumptions are often made regarding the capacity of patients who have learning disabilities to make decisions about important aspects of their life. This preliminary study investigated whether or not it was possible to adapt a well-known assessment of cognitive impairment (The Montreal Cognitive Assessment) and use this as a tool to determine capacity in patients with a learning disability. Objective: To determine the psychometric properties of the Montreal Cognitive Assessment (MoCA) in patients with a learning disability and examine it’s utility for conducting mental capacity assessment. Method: This study was a cross-sectional, instrument validation study in an inpatient hospital setting, located in the East of England. The sample consisted of two groups: (i) 31 consecutively admitted hospital patients and (ii) 10 multidisciplinary team members who served as a comparison group. The MoCA, a 12-item screen for mild cognitive impairment and the Dysexecutive Questionnaire (DEX), were used in this study. Item analysis was conducted by comparing item endorsement for all participants that had a learning disability utilising Difficulty and Discrimination Indices for each item on the MoCA. We examined the internal consistency of a revised scale derived from item analysis and used a one-way ANOVA to determine concurrent validity by comparing scores between two patient subgroups and the comparison group. Results: A 7-item scale, ‘MoCA-LD’ (alpha coefficient = 0.82) emerged from item analysis. A statistically significant negative correlation was observed between MoCA-LD and DEX (Pearson correlation = 0.66, P < 0.01). As expected, participants in the borderline category scored higher on MoCA-LD than those with mild learning disability, as did those with no learning disability (P < 0.001). ª 2015 John Wiley & Sons Ltd, British Journal of Learning Disabilities doi:10.1111/bld.12157 2 D. J. Edge, et al. Conclusion: The MoCA-LD has the potential to be a useful tool for mental capacity assessment in patients with a learning disability. Keywords Assessment, DEX, learning disability, mental capacity, MoCA Introduction The Mental Capacity Act, introduced in the United Kingdom in 2005, states that a person is not capable of making a decision for themselves if they are deemed unable to: ‘understand the information relevant to the decision, retain that information, use or weigh that information as part of the process of making the decision or communicate [their] decision’ (Mental Capacity Act, 2005, part 1, page 2). The question of a person’s capacity to make important decisions is a common one amongst mental health professionals. Not only is the question common, it is also extremely important. The answer to such a question could potentially render a patient helpless in making decisions regarding their treatment, care, finances and many other important aspects of their life. Accurate and valid assessment of a patient’s mental capacity is, therefore, essential for ensuring that practitioners comply with the requirements defined in the Mental Capacity Act (2005) so that important decisions are always made with the patient’s involvement where they are capable. In clinical practice, knowledge deficits about the assessment of decision making capacity are common. Ganzini et al., (2003) reviewed 395 responses from different healthcare professionals where 22 of 23 pitfalls were identified as ‘common’ with the vast majority being rated as somewhat important to patient care. A learning disability is considered to be a life-long developmental condition that comprises of significant impairments in both a person’s intellectual functioning and their adaptive/social functioning (The British Psychological Society, 2000). The term used to describe this condition can vary in different countries e.g., in the United States, the term ‘intellectual disability’ is used instead of learning disability. Amongst adults with learning disabilities there is a high rate of mental incapacity, particularly with regard to making important healthcare decisions (Wong et al., 2000). This differs from studies examining capacity amongst general psychiatric in-patients where a sizeable proportion is found to be capable of making treatment decisions (Okai et al., 2007). However, it is still not appropriate to readily assume that all people with a learning disability necessarily lack decision making capacity and incorrect assumptions are often made regarding incapacity when treating these individuals (Bradbury-Jones et al., 2013). Since the introduction of the Mental Capacity Act (2005) in the United Kingdom, there has been a need for the development of valid and reliable measures of decision making ability that reflect the legal criteria for mental capacity (Keywood & Flynn, 2006; Moye et al., 2006). A comprehensive assessment of capacity requires time and has been described as cumbersome and difficult to perform in an acute care setting (Chow et al., 2010). A recent integrative review of mental capacity assessment tools identified 19 instruments currently available to clinicians to help assess an individual’s capacity to consent to treatment. The instruments tend to involve some form of semi structured/structured interview and can take between 10 and 90 min to administer. The majority were standardised against in-patient populations with conditions such as dementia or schizophrenia and only a small number were found to have demonstrated both reliability and validity (Lamont et al., 2013). As such, the current available range of mental capacity assessment tools is not ideally suited for patients with learning disabilities. It has, therefore become necessary to develop an instrument for assessing mental capacity which reflects the needs of this distinct population. In particular, such a tool should ideally be quick to administer, and be flexibly presented in a way that the respondent is able to understand to ensure that individuals are given every opportunity to demonstrate their capacity for decision making (Bailey et al., 2011). One of the difficulties identified with assessing the mental capacity of someone with a learning disability is being able to accurately evaluate their ability to ‘weigh up’ the information relevant to their decision (Willner et al., 2010b). Studies investigating capacity for financial reasoning in patients with learning disabilities suggest that the ability to perform consistently on decision making tasks is more strongly related to executive functioning (EF) than Intelligence Quotient (IQ). In addition, it is thought that EF is closely related to the ability to ‘weigh up’ information relevant to a decision (Willner et al., 2010a; Willner et al., 2010b; Suto et al., 2005). It is important, therefore, that capacity assessment in a learning disability population includes an assessment of EF to reflect the legal criteria for assessing mental capacity. We proposed to adapt a cognitive screening assessment to act as a mental capacity screening assessment tool for people with a learning disability. The Montreal Cognitive Assessment (MoCA): (Nasreddine et al., 2005) is a 10-min, 30-point cognitive screening test designed to assist health professionals in the detection of Mild Cognitive Impairments (MCI) in adults. It consists of 12 items and is an ª 2015 John Wiley & Sons Ltd, British Journal of Learning Disabilities Learning disability mental capacity assessment assessment which is widely used in clinical settings. To date, the majority of research regarding the application of the MoCA involves tests of specificity and validity regarding the detection of MCI and conditions such as Alzheimer’s disease. Within specific populations (e.g. memory clinics, people aged over 60) the MoCA has been found to have high sensitivity in identifying MCI and dementia (Smith et al., 2007). The MoCA was chosen for this study as it is currently used as part of routine clinical assessment at the study location and patients have generally responded well to it. It is easy to use and measures a wide range of cognitive functions related to mental capacity. This is also reflected in a survey of different cognitive screening assessments which suggests that the MoCA is regarded by relevant professionals as easy to administer, effective and well-tolerated by those completing it (Zahinoor et al., 2013). Some studies exploring the use of the MoCA as a screening tool for cognitive impairments in schizophrenic patients have reported preliminary evidence that the MoCA performs well in detecting true positive findings (Flsekovic et al., 2012). The MoCA has a strong correlation with the Mini Mental State Examination (MMSE): (Flsekovic et al., 2012) and those judged to lack capacity are more likely to have cognitive impairments on the MMSE (Raymont et al., 2007). This suggests that the MoCA is likely to have a similar relationship with existing capacity assessment tools. Currently, there is no evidence to suggest that these items are internally consistent within a learning disability population nor is there evidence that the test has been modified for different patient populations, other than changing the language in which it is presented. The original MoCA was designed to detect MCI. In a learning disability population, where cognitive impairment is generally more severe, there is a high possibility that the scale in its current form will have a ceiling effect due to a lack of item endorsement. It is likely, therefore, that some items in the MoCA are redundant in a learning disability population. Overall, the aims of this study are: 1. To explore the relationship between the MoCA and an individual’s executive functioning using the Dysexecutive Questionnaire (DEX). 2. To establish whether or not the MoCA can be used as screening tool for assessing mental capacity for patients with a learning disability Method Participants This study was conducted at a 53 bed, independent hospital located in the East of England. The hospital is registered with the Care Quality Commission, for people with a learning disability who may also have a comorbid mental ª 2015 John Wiley & Sons Ltd, British Journal of Learning Disabilities 3 health problem, personality disorder, forensic history or Autistic Spectrum Disorder. Anonymised MoCA data from a sample of 31 consecutively admitted patients at the study location were analysed. All patient participants had either been detained under the Mental Health Act (2007) or had given consent to be assessed and to receive treatment informally for the duration of their stay at the hospital. The majority of the patients included in our analysis were men (64.5%) and aged between 18 and 57 years (Mean = 34.9, SD = 12.6). The patient’s data showed varying levels of intellectual functioning as well as a range of diagnoses. The majority (61.3%) had a mild learning disability. Other learning disability ranges were borderline (19.4%), and moderate (3.2%). Other patients (16.1%) who had normal intellectual functioning with an autistic spectrum disorder were excluded from our analysis leaving a total of 26 data records in the patient group. A second group of 10 members from the multi-disciplinary team at the study location volunteered to provide MoCA data as a comparison group. As each person was a professional working at the hospital it was assumed that they were free of mental illness, did not have a learning disability and had decision making capacity. This group consisted of two males and eight females aged between 22 and 60 (Mean = 40.5, SD = 14.4). While the comparison group was not completely matched to the patient group, there was a substantial overlap in age distribution of both groups, thus reducing any age related bias in cognitive functioning measured by the MoCA. A T-test showed that the mean difference in age between the two groups was not significant (P = 0.29). Materials In addition to the MoCA, this study also used routinely collected data from the DEX to evaluate the MoCA’s ability to measure executive functioning. The DEX is a 20-item, three factor questionnaire designed to assess everyday changes to cognition, emotion and behaviour after neuropathology. Each item on the DEX gives a statement related to a characteristic of Dysexecutive Syndrome and is scored on a 5 point (0–4) Likert scale (ranging from ‘Never’ to ‘Very often’). The DEX comes in two versions, one of which is designed to be completed by the subject (DEX-S) and the other by a relative or carer (DEX-I). The only difference between the two versions is that DEX-S is written in the first person (i.e. ‘I have difficulty thinking ahead and planning for the future’) and DEX-I is written in the third person (i.e ‘Has difficulty thinking ahead and planning for the future’) Both versions are commonly used as part of the Behavioural Assessment of the Dysexecutive Syndrome (BADS) which is considered an ecologically valid multidimensional measure of executive functioning (Barker et al., 2011). DEX-I ratings are considered a more reliable index 4 D. J. Edge, et al. due to the tendency for patients to rate themselves with fewer or less problems (McBrinn et al., 2008). The DEX- I has also been found to accurately identify ‘real world’ executive deficits and these measures corresponded with subsequent performance on BADS executive subtests (Wilson, 1996;. cited in Barker et al., 2011). Procedure MoCA administration to patients was part of routine clinical assessment following admission to the hospital. Each individual in the patient group was administered the MoCA (English Additional Version 3) by a professional using the guidance notes provided by the authors. All assessments were completed in one sitting at a location which was private and familiar to the individual being tested. The nonpatient comparison group were administered the MoCA in the same way as the patient group. DEXI questionnaires were completed on behalf of the patient group by clinical staff members of the hospital who had primary responsibilities for each patient and had interacted with the patient continuously for at least 2 weeks following admission. In most cases, it was the patient’s primary nurse who completed the questionnaire, but keyworkers were also used from the support team where the primary nurse was not available. DEX-S questionnaires were completed by the comparison group. Ethical issues According to the NHS England Health Research Authority (HRA) decision tool, this study does not require ethics approval. Staff participants provided informed consent and the hospital’s Clinical Effectiveness, Audit and Research Committee approved the study. All data records were anonymised. 1972). A second analysis using Pearson’s Correlation coefficient (one-tailed) was used to examine the relationship between DEX scores and the revised instrument. A one-way Analysis of Variance (ANOVA) was used to determine concurrent validity of the revised scale by comparing the mean scores between the comparison group and those in the borderline and mild intellectual range. As there was only one patient identified with a moderate learning disability, their data were not included in this part of the analysis. Results Alpha coefficient for the MoCA and the DEX in the patient group were 0.78 and 0.88, respectively, with a significant negative correlation between both instruments (r = 0.70, P < 0.01). Item analysis using difficulty and discrimination indices identified seven items that were appropriate for the patient group, having sufficiently discriminated between the highest and lowest performing patients (Table 1). The revised scale, termed ‘MoCA-LD’ for convenience, consisted of the following tasks: Clock Drawing, Trail Making, Copy Cylinder, Working Memory, Naming, Digit Span and Orientation. The scale had a high internal consistency (alpha coefficient = 0.82) and maintained a significant negative correlation with the DEX for all participants (r = 0.66, P < 0.01) (Fig. 1). The means and standard deviations for each of the three groups is given in Table 2. Due to the nonequivalence in variance between the three groups, the Welch’s F ratio was used for comparing the mean differences in MoCA-LD scores. There was a significant difference in MoCA-LD scores between the comparison group and those in the borderline and mild disability ranges (Welch’s F (2, 12.23) = 36.81, P < 0.001) (Table 3). Post hoc tests (Games-Howell) showed statistically significant mean differences between all three groups (Table 4). Data analysis The SPSS version 20 (SPSS IBM, New York, U.S.A, 2011) was used for data analysis. Pearson’s Correlation coefficient was used to test the correlation between DEX and MoCA patient scores. Alpha coefficient was conducted on MoCA scores to determine internal consistency reliability. Item analysis for the MoCA was conducted by calculating Difficulty and Discriminatory Indices for each item based on the data from all participants who had a learning disability. Items were selected for a revised scale if the Difficulty Index did not exceed the calculated optimal level of the item and the Discrimination Index exceeded the calculated lower bound for the item. This would suggest that the item was neither too easy nor too difficult to discriminate between the highest and lowest performers of the patient group (Crocker & Algina, 1986; Nunnally, Discussion In this preliminary study, we have been able to extract a modified MoCA-LD scale with a high internal consistency which can assess cognitive skills reflective of the legal criteria to determine a person’s mental capacity. For example, the digit span task and working memory task measure a patient’s ability to retain information. In addition to the individual tasks eliciting information about a patient’s ability to communicate and understand information the significant correlation between the MoCALD scale and the DEX questionnaire indicates that a person who obtains a low score on the MoCA-LD is more likely to have executive dysfunction than someone who obtains a high score. As suggested by Willner et al., (2010a,b), executive dysfunction appears to be a key factor ª 2015 John Wiley & Sons Ltd, British Journal of Learning Disabilities Learning disability mental capacity assessment 5 Table 1 Items analysis for the MoCA MoCA item Difficulty index (p) Discrimination index (d) Optimal level Lower bound Corrected item total correlation Clock Drawinga Trail Makinga Copy Cylindera Naminga Working Memorya Tapping Digit Spana Serial Subtraction Repetition Fluency Abstraciton Orientationa 0.23 0.5 0.42 0.58 0.12 0.62 0.23 0.27 0.12 0.12 0.31 0.54 0.5 0.75 0.88 0.62 0.38 0.38 0.5 0.38 0 0 0.38 0.88 0.62 0.75 0.75 0.62 0.58 0.75 0.66 0.62 0.66 0.75 0.66 0.57 0.39 0.66 0.66 0.39 0.29 0.66 0.49 0.39 0.49 0.66 0.49 0.26 0.72 0.62 0.74 0.62 0.63 – 0.63 – – – – 0.67 Identified MOCA-LD Items where p < Optimal Level AND d > Lower Bound. a Table 4 Post hoc analysis of mean difference (Games-Howell) Mean difference Groups Comparison Borderline Borderline 3.23 – * Mild 9.74*** 6.51** P < 0.05. P < 0.005. *** P < 0.001. * ** Figure 1 MoCA-LD and DEX correlation. Table 2 Mean and standard deviation of MoCA-LD scores Group N Mean SD Comparison Borderline Mild Total 10 6 19 35 19.90 16.67 10.16 14.06 0.99 2.42 4.82 5.76 Table 3 One way ANOVA statistics Between Groups Within Groups Total Sum of squares df 671.13 456.76 1127.89 2 12.23 14.23 Mean square Welch’s F Sig. 335.56 14.27 36.81 – .0001 ª 2015 John Wiley & Sons Ltd, British Journal of Learning Disabilities in helping to determine whether an individual can ‘weigh up’ information; this construct is currently considered to be difficult to assess for people with a learning disability. It may also be possible for individual tasks, such as the working memory task or the naming task, to be adapted to contain information relevant to the decision being made. Total scores on the MoCA-LD scale were also able to differentiate between individuals in the borderline and mild IQ range as well as those who had no learning disability. . The need to conduct mental capacity assessment regularly is, therefore, indicated to avoid the error of wrong assumption of lack of capacity. The use of a tool such as the MoCALD can help clinicians to extract more detailed information regarding an individual’s ability to weigh up and retain information presented to them thus allowing for more accurate assessment of an individual’s mental capacity alongside existing methods. At this time, a tool like this may only be used to indicate the presence of decision making capacity, but not to confirm its absence. Further work is required to determine the sensitivity and specificity of the revised scale in other learning disability settings, e.g., the community. Overall, the results of this study demonstrate the potential for the application of the MoCA as a tool for mental capacity assessment for patients with a learning disability. 6 D. J. Edge, et al. Limitations There are certain limitations worth mentioning when discussing the results of this study. First, participants in the patient group were not individually assessed to obtain their IQ scores. Rather, their admission diagnosis was used for severity classification of learning disability. Whilst one can assume that such data are accurate; this information was not confirmed via a recent or up to date assessment for all participants in the study. Only a small portion of the participants had recent diagnoses of a learning disability as part of the assessment process during their admission to the hospital. Given that indices of intellectual functioning are not known to fluctuate easily, it is unlikely that this limitation will affect the validity of the study findings. Secondly, the level of co-morbidity within the patient group was also very high with 26 patient records (84%) showing a diagnosed mental illness, personality or other developmental disorders (such as autistic spectrum disorders). Even though a person with learning disabilities who comes into contact with specialist health services would often have secondary complex health or personality problems (Tajuddin et al., 2004; Hall et al., 2006), such problems could be considered confounding factors when assessing the difference between a person’s mental capacity and executive functioning. Whilst the high level of co-morbidity revealed in the patient records may be reflective of general learning disability populations, the comparison group entirely consisted of professionals and, therefore, may not be considered as representative of the general population. Another limitation of the study is the relatively small number of records included in data analysis and the limited population from which the data were extracted. Conclusions The results of this study indicate that it would be beneficial for future research to gather further data from a range of populations to establish norms for the use of the MoCA in a learning disability population using MoCA-LD. Future research can also aim to expand the general applications of this preliminary study by including larger sample sizes taken from a wider variety of services in different settings nationwide. In addition, further studies exploring the relationship between the identified MoCA-LD items and already established capacity assessment tools could potentially lead to the development of the MoCA-LD as a tool for providing evidence of the presence of decision making capacity. 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