The interaction between insight and legal capacity in dementia

The interaction between insight and legal capacity in dementia Alfredo Calcedo-Barba, Paola Castelli Candia, Javier Conejo Galindo and Fernando Garcı́a Solano Purpose of review In this article we will review the relevant literature published in the last year on insight and on assessment of competency of patients with dementia. We have analysed the implications that recent research on insight may have for capacity assessment. Recent findings Studies that have recently been published deal with financial assessment and financial abilities of dementia patients, and on the potential impairment of driving, and particularly on the awareness that patients have of their loss of abilities. Summary Recent research on insight may have important implications for capacity assessment in dementia. Keywords mental competency, insight, dementia Curr Opin Psychiatry 17:397–400. # 2004 Lippincott Williams & Wilkins. Department of Psychiatry, Hospital General Universitario Gregorio Marañón, Universidad Complutense de Madrid, Madrid, Spain Correspondence to Alfredo Calcedo-Barba, Hospital General Gregorio Marañón, Ibiza 41, 28009 Madrid, Spain Tel: +34 630 992720; email: [email protected] Current Opinion in Psychiatry 2004, 17:397–400 Abbreviation MCI mild cognitive impairment 2004 Lippincott Williams & Wilkins 0951-7367 # Introduction It is our intention in this article to review the research literature that has appeared in the last year regarding two closely related and interesting concepts – insight and competency to make decisions – in a particular group of diseases, namely dementia. Insight as a concept drew great attention from researchers in the 1990s, particularly in the field of schizophrenia. Amador and David [1] provide an excellent review of this topic. Also, a good number of studies have been published recently on insight and different neuropsychiatric disorders including dementia [2]. Similarly, the assessment of legal capacity has been another area of research with significant activity in recent years [3 . .]. Capacity assessment is a context-sensible issue and because of that it has fragmented into several sub-areas of research such as general capacity, parental capacity, capacity to stand trial, and so forth. As this review is limited to patients with dementia, when we use the term capacity it will be synonymous with general legal capacity, or the need for guardianship and conservatorship. The definition of capacity in dementia patients is not an easy task. It is important to establish very clearly the constructs that are used in order to arrive at a determination of capacity. First of all we must not forget that the assessment of capacity is a functional assessment in a specific context. This is an easy task in a field study, in which the clinician only has to verify the level of performance of the patient in order to make a judgement and the corresponding dispositions. But the level of functioning is not the only criterion in capacity assessment, and the concepts of understanding and appreciation, which are very close to insight, have been widely used [4]. So the important question is how relevant is insight in the assessment of legal capacity? First we must clarify what we understand as insight. This is not an easy task given that there is a long tradition in philosophy that teaches us about the difference between self-knowledge and knowledge of what is outside the individual [5]. In psychiatry, the term insight has important connotations within the field of Freudian theories and, in fact, a good number of psychotherapeutic techniques based on this model are called insightoriented therapies. Using a neurological approach the term insight has been considered synonymous with DOI: 10.1097/01.yco.0000139977.90931.d2 397 398 Forensic psychiatry anosognosia and anosodiaphoria [6] in stroke patients. Cognitive psychology has created another model of what is insight and defines six basic elements [7]: (1) Inferential processes are intact but perceptual input is disturbed. (2) There is a breakdown in inferential processes. (3) There is a breakdown in the process of self-monitoring. (4) There is a breakdown in the process involved in error checking. (5) The linkage between thought and affect is impaired. (6) There are deficits in the maintenance of representations in memory, the sequential organization behaviour, and the sustaining of efforts to establish and achieve a goal or plan. Another problem is the value that we may give to selfdeception and disease. Some authors [7] consider that gross distortions of insight are the rigidifying and overutilization of normal psychological processes which may be considered pathological, whereas other researchers have accepted that a certain degree of denial cannot be considered pathological in Alzheimer’s Disease [8]. It is interesting to note that, for example, according to Spanish statutory law [9] no patient can be forced to know his or her diagnosis and patients have the right to refuse to be given information about their medical condition. It is clear that the intention of the legislator is to allow those self-deception mechanisms to work if the patient so demands. This contradicts what some studies have demonstrated regarding disclosure of diagnosis. Pinner and Bouman [10 . .], for example, found that patients wanted to be informed and only 6% developed depressive illness 1 year after the disclosure. Insight and dementia It is well known that help-seeking behaviour in dementia varies significantly across different cultures [11,12]. In the majority of cases dementia is a degenerative disease for which available treatments can only, at most, slow the progression of the disease. However, present practice informs that the limit between primary prevention and treatment of a clinically evident disease is not so clear in dementia patients and the general elderly population. Therefore, we can come across patients who may be taking anti-dementia drugs but who are not aware or do not acknowledge that they suffer from dementia. There is no conclusive evidence regarding an association between lack of insight in dementia and other clinical correlates such as demographic variables, behavioural symptoms and severity of dementia [2]. Studies published in the last year have not clarified the situation. Rymer et al. [13] studied the impact of impaired awareness of memory problems in a sample of 41 patients with Alzheimer’s disease and found that lack of insight clearly correlated with greater burden in caregiving relatives. Insight was measured with the Discrepancy Questionnaire [14], an instrument that verifies concordance between patient and caregivers’ answers of a memory problems questionnaire. In a sample of 15 Alzheimer’s disease patients and 15 healthy elderly controls Wild and Cottrell [15 . .] studied the relationship between driving abilities, the patient’s own view of their driving performance, and the caregivers’ opinion of driving abilities. It was found that Alzheimer’s disease patients considered themselves better drivers than they really were in nine out of 10 driving tasks. Controls agreed with the objective evaluator in nine out of 10 tasks. Lack of insight of poor driving abilities correlated significantly with poor insight of cognitive performance. The study by Duke et al. [16 . .] elegantly proved how patients with Alzherimer’s disease are able to estimate adequately the deterioration in functioning, but cannot acknowledge their own limitations. This is related with the theoretical consideration we made before: that the abilities needed for self-knowledge may be different. Alternatively, denial may be another function that helps to maintain the self-esteem of the demented patient. Howorth et al. [17 . .] found in a group of demented patients that poor insight was more related to short-term frustration or distress, continuous discontent, lack of concern, normalization of problems, worry and anxiety, defensiveness, explicit denial and priority given to other problems. Insight has been studied not only in Alzheimer’s disease patients, but also among patients with mild cognitive impairment (MCI). Vogel et al. [18 .] found that MCI patients had the same level of insight of their memory limitations as Alzheimer’s disease patients. Therefore, they suggest that subjective memory complaints should not be included in the diagnostic criteria because that would increase the false positive rate. Capacity assessment Griffith et al. [19 . .] studied financial abilities among the elderly. They divided their sample into three groups: elderly controls, amnestic MCI patients, and Alzheimer’s disease patients. The financial capacity instrument [20] was used as the outcome variable. These authors found a robust negative correlation between the severity of the dementia and the loss of financial abilities. Also patients with MCI presented a significant loss of financial abilities showing that functional deterioration is more prominent than cognitive deficits. The same group from the University of Alabama compared financial abilities according to financial capacity instrument with the reported abilities from Alzhei- Insight and legal capacity in dementia Calcedo-Barba et al. 399 mer’s disease patients and caregivers [21 . .]. They found that Alzheimer’s disease patients tend to overestimate their financial abilities in comparison with the reports of their family caregivers. Also when the reports from patients and caregivers were studied twice within a 1month interval a significant lack of stability was found in both groups, which means that patients and caregivers gave different estimates at different times. Other questionnaires have been developed and published recently regarding financial capacity. Cramer et al. [22 .] validated another financial capacity instrument that showed high correlation with standard dementia questionnaires. From research to clinical and forensic practice Clinical and forensic psychiatry are both applied disciplines. Regarding capacity assessment the problem we have to face is what criteria we must use to determine capacity. From what we have reviewed so far we have demonstrated two basic approaches: functional and insight-oriented. The functional approach in dementia patients has been classified in several domains [3 . .]: finances, health, independent living and transportation. The domain of finances can be subdivided in three basic cognitive skills: (1) declarative knowledge that includes storing of facts, concepts and events (e.g. investments, bank statements, etc); (2) procedural knowledge that includes pragmatic skills such as routines and action sequences that are basically performed and are less accessible to conscious recollection (e.g. counting money, arithmetic verification of financial operations); and (3) financial judgement as the capacity of rational, practical, considered and astute decisions in novel, ambiguous or complex social situations (e.g. sensitivity to fraud, invulnerability to coercion). The domain of health relates to medical decision-making and the different abilities related to that task (making a choice, understanding, appreciating and reasoning) [3 . .,4]. This domain also includes other tasks such as following a diet, taking medication properly and attending visits to doctors or nurses. The domain of independent living involves the capacity of patients’ abilities at managing themselves and their place of residence [3 . .]. Specific tasks of this domain include household cleaning and maintenance, laundry, meal shopping and preparation, communication, management of different services for the elderly and personal hygiene. Finally, in the transportation domain are included tasks that deal with driving abilities and the use of public transportation (e.g. ordering a taxi and use of buses or subway) [3 . .]. Specific questionnaires have been developed for each of these domains that quantify specific abilities. These questionnaires are widely available. It may be that other domains not included here may also need to be evaluated (e.g. testamentary capacity) for which we do not yet have good instruments. It would seem from this review that capacity assessment in dementia patients is fairly straightforward. Unfortunately, however, this is not the case and we believe that one of the major problems is related to insight. Lack of insight cannot be considered something similar to anosognosia or inattention, although in some cases they may overlap. Dementia patients with poor insight do not have the same problem in their recognition abilities as the patients that suffer from visual agnosia. Likewise, patients with a severe stroke who do not recognize one side of their own body cannot be compared with patients with mild dementia who minimize memory problems. Lack of insight is more closely related to the attitudes of the patient to the processes of dementia, and this attitude is closely related to the cultural environment in which the individual is embedded. The problem of lack of insight in dementia patients cannot be equated to schizophrenia patients who suffer from delusions (unless the demented patient also presents delusion as part of the clinical manifestation of the dementia). The delusional patient has, by definition, lack of insight, which is something different from a patient who has activated a defence mechanism of denial. It should not be forgotten that this denial appears in the majority of serious chronic diseases. When qualitative research methodology is applied a much richer picture of the patient’s reactions to the dementia process is seen [17 . .,23]. Furthermore, how the illness is experienced by the individual and the mixing of personal values and facts have, in the end, a strong influence on how individuals interpret the signs and symptoms they suffer [24]. Therefore, functional assessment of capacity is something necessary but not sufficient in a capacity evaluation. On top of this information must be included the attitudes of patients to their own functional limitations, and it is at this stage when a careful clinical assessment must start. We may evaluate, for instance, a patient that has lost the ability to keep track of her bank accounts and investments, and her capacity is questioned. For a good forensic examination we must find out the attitude of the patient to this situation, and also the strategies she has developed to deal with her limitations. Psycho- 400 Forensic psychiatry pathology that can distort this analysis and decisionmaking process must also be evaluated. Conclusion Insight is an important concept and clinical phenomenon that has great utility in forensic practice. However, some caution must be taken when using insight in relation to competence assessments. Nowadays we use a functional approach in which insight could be a very important contribution. Therefore, measuring the patient’s abilities would be something necessary but not sufficient in a competence assessment. Knowing a patient’s attitudes to her deficits is a key element in an evaluation of competence. Very interesting research has been published recently to ascertain how aware dementia patients are of their own deficits. On the other hand, insight should not be taken in clinical and forensic practice as a present-or-absent sign. In many cases the clinician must evaluate carefully how clinically significant is the lack of awareness the patient may have. It is a delicate judgement to decide if unawareness of a specific cognitive or functional deficit is something intrinsically pathological or is just a healthy way to cope with the mental and physical ailments of old age. References and recommended reading Papers of particular interest, published within the annual period of review, have been highlighted as: . of special interest .. of outstanding interest 1 Amador X, David A. Insight and psychosis. New York: Oxford University Press; 1998. 2 Flashman LA. Disorders of awareness in neuropsychiatric syndromes: an update. Curr Psychiatry Rep 2002; 4:346–353. Grisso T. Evaluating competencies. Forensic assessments and instruments. New York: Kluwer Academic; 2003. This is an excellent review of all the relevant clinical and research instruments related with competency assessment. The author proposes a model to evaluate the instruments and a critique is included of all the instruments. 3 .. 10 Pinner G, Bouman WP. Attitudes of patients with mild dementia and their carers towards disclosure of the diagnosis. Int Psychogeriatr 2003; 15:279– 288. In this interesting study the vast majority of patients with dementia said that they preferred to be informed about the diagnosis. Also, the prevalence of depression 1 year after the disclosure of the diagnosis was very small. .. 11 Yamashiro G, Matsuoka JK, Help-seeking among Asian and Pacific Americans: a multiperspective analysis. Soc Work 1997; 42:176–186. 12 Braun KL, Browne CV. Perceptions of dementia, caregiving, and help seeking among Asian and Pacific Islander Americans. Health Soc Work 1998; 23:262–274. 13 Rymer S, Salloway S, Norton L, et al. Impaired awareness, behavior disturbance, and caregiver burden in Alzheimer disease. Alzheimer Dis Assoc Disord 2002; 16:248–253. 14 Green J, Goldstein F, Sirochman B, Green R. Variable awareness of deficits in Alzheimer’s disease. Neuropsychiatry Neuropsychol Behav Neurol 1993; 6:159–165. 15 Wild K, Cotrell V. Identifying driving impairment in Alzheimer disease: a comparison of self and observer reports versus driving evaluation. Alzheimer Dis Assoc Disord 2003; 17:27–34. This was an original study in which objective measures of driving performance were compared with patients’ and caregivers’ opinions. This study indicated a tightening of driving restrictions for Alzheimer’s disease patients. .. 16 Duke LM, Seltzer B, Seltzer JE, Vasterling JJ. Cognitive components of deficit awareness in Alzheimer’s disease. Neuropsychology 2002; 16:359–369. An original study that proves how denial defense mechanisms work. Patients with Alzheimer’s disease estimate accurately the impairment of functioning of another patient seen on videotape, but were unable to estimate accurately their own deficits. .. 17 Howorth P, Saper J. The dimensions of insight in people with dementia. Aging Ment Health 2003; 7:113–122. This was another interesting study that supported the idea that poor insight in dementia patients is more closely related to emotional problems than cognitive deterioration. .. 18 Vogel A, Stokholm J, Gade A, et al. Awareness of deficits in mild cognitive impairment and Alzheimer’s disease: do MCI patients have impaired insight? Dement Geriatr Cogn Disord 2004; 17:181–187. These authors prove that MCI patients also have poor insight, at the same level as Alzheimer’s disease patients. . 19 Griffith HR, Belue K, Sicola A, et al. Impaired financial abilities in mild cognitive impairment: a direct assessment approach. Neurology 2003; 60:449–457. This outstanding study with an elegant design demonstrated how MCI patients have a deterioration in their financial abilities greater than expected with their cognitive level. .. 20 Marson DC, Sawrie SM, Snyder S, et al. Assessing financial capacity in patients with Alzheimer disease: A conceptual model and prototype instrument. Arch Neurol 2000; 57:877–884. 21 Wadley VG, Harrell LE, Marson DC. Self- and informant report of financial abilities in patients with Alzheimer’s disease: reliable and valid? J Am Geriatr Soc 2003; 51:1621–1626. This very interesting study proved that estimation of the financial abilities of dementia patients does not reflect the real level of functioning. Also, it was found that caregivers may under or overestimate the abilities of the patient. .. 4 Appelbaum PS, Grisso T. Assessing patient’s capacities to consent to treatment. N Engl J Med 1988; 319:1635–1638. 5 Gertler B. Self-knowledge. In: Zalta EN, editor. The Stanford Encyclopedia of Philosophy (Spring 2003 Edition); http://plato.stanford.edu/archives/ spr2003/entries/self-knowledge. [Accessed 13 April 2004] 6 Babinski J. Contribution to the study of mental problems in organic brain hemiplegia [in French]. Revue Neurologique 1914; 27:845–848. 7 Sackeim HA. Introduction. The meaning of insight. In: Amador X, David A, editors. Insight and psychosis. New York: Oxford University Press; 1998. pp. 3–12. 22 Cramer K, Tuokko HA, Mateer CA, Hultsch DF. Measuring awareness of financial skills: reliability and validity of a new measure. Aging Ment Health 2004; 8:161–171. This was an interesting validation study of a financial capacity instrument, measuring awareness of financial skills, which is very promising but needs further research. 8 Sevush S, Leve N. Denial of memory deficit in Alzheimer’s disease. Am J Psychiatry 1993; 150:748–751. 23 Clare L. Managing threats to self: awareness in early stage Alzheimer’s disease. Soc Sci Med 2003; 57:1017–1029. 9 Jefatura del Estado. Ley Básica Reguladora de la Autonomı́a del Paciente y de Derechos y Obligaciones en Materia de Información y Documentación Clı́nica. BOE; September 2002. pp. 40126–40132. 24 Fulford KWM. Completing Kraepelin’s psychopathology. Insight, delusion, and the phenomenology of illness. In: Amador X, David A, editors. Insight and psychosis. New York: Oxford University Press; 1998. pp. 47–65. .