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Ecological Aspects of Cognitive Assessment Ecological aspects of cognitive assessment Neuropsych Publishers, Maastricht, The Netherlands © S.F.M. Bouwens, Maastricht 2009 Cover design Har Naus Layout Jacky Rinket Production Datawyse BV, Maastricht Publisher Neuropsych Publishers ISBN 978-90-75579-38-3 NeuroPsych Publishers is a non-profit organisation, which aims at promoting the signs of ‘Brain and Behaviour’ and improving the application of the products of this science in health care and education. NeuroPsych Publishers accomplishes these aims by publishing books, dissertation and other products of scientific activity, by disseminating educational material and publication of tests, assessment scales and other psychometric instruments in the field of Neuropsychology, Neuropsychiatry and other areas within the domain of Brain and Behaviour. Neuropsych Publishers Department of Psychiatry & Neuropsychology Maastricht University P.O. Box 616 6200 MD Maastricht The Netherlands www.np.unimaas.nl Ecological aspects of cognitive assessment Proefschrift Ter verkrijging van de graad van doctor aan de Universiteit Maastricht, op gezag van Rector Magnificus, Prof. mr. G.P.M.F. Mols, volgens het besluit van het College van Decanen, in het openbaar te verdedigen op 29 april 2009 om 14.00 uur door Sharon Franciska Maria Bouwens Geboren op 6 februari 1982 te Oirschot Promotor Prof. dr. F.R.J. Verhey Co-promotor Dr. C.M. van Heugten Beoordelingscommissie Prof. dr. J.M.G.A. Schols (voorzitter) Prof. dr. M. Limburg Dr. R.W.H.M. Ponds Prof. dr. E. Salmon (Université de Liège) Prof. dr. D.T. Wade The research described in this thesis was performed at the Department of Psychiatry and Neuropsychology, School for Mental Health and Neuroscience, Maastricht University, The Netherlands. The research described in this thesis was financially supported by INTERREG III 2000-2006, projectno. EMR.INT3.0604_5.3.64 and Instituut voor Revalidatie Vraagstukken (iRv). Financial support for the publication of this thesis was kindly provided by Nutricia Advanced Medical Nutrition, Science Plus Group - Software for Science, Internationale Stichting Alzheimer Onderzoek, Alzheimer Nederland, Servier, Danone Research - Centre for Specialised Nutrition, AstraZeneca, Boehringer Ingelheim bv, Novartis Pharma B.V., Lundbeck B.V. and Janssen-Cilag B.V. Contents Chapter 0 Prologue 7 Chapter 1 General introduction 11 Part I Association between cognition and daily life functioning 17 Chapter 2 Association between cognition and daily life functioning in dementia subtypes 19 Chapter 3 Relationship between measures of dementia severity and observation of daily life functioning as measured with the Assessment of Motor and Process Skills (AMPS) 31 Part II Ecological validity of neuropsychological assessment and the integration of domains 45 Chapter 4 Aspects of the ecological validity of neuropsychological tests: Introduction to Part II 47 Chapter 5 The ecological validity of neuropsychological assessment with regard to daily life functioning after acquired brain injury: a different approach 67 Chapter 6 The application of an integrated approach combining neuropsychological assessment and observational data in clinical practice: data from PROFINTEG 85 Part III Individual goal-setting 101 Chapter 7 Review of Goal Attainment Scaling as a useful outcome measure in psychogeriatric patients with cognitive disorders 103 Chapter 8 Effectiveness of a post-acute outpatient community re-entry cognitive rehabilitation programme for patients with acquired brain injury 129 Chapter 9 The practical use of Goal Attainment Scaling for people with acquired brain injury who receive cognitive rehabilitation 149 Chapter 10 General discussion 165 Summary 177 Samenvatting 181 Publications 187 List of abbreviations 191 Dankwoord 195 Curriculum vitae 201 Chapter 0 Prologue Chapter 0 This thesis deals with the ecological aspects of cognitive assessment. The following cases illustrate common issues involved in the investigation of the association between the cognitive assessment used to identify cognitive disorders and the daily life functioning (in relation to the individual patient) of people with brain dysfunction. Case A The first case concerns a 42-year-old male who is a former forklift truck driver with a medium level of education. He suffered from contusio cerebri accompanied by a right frontoparietal subdural haematoma. He lives alone. His cognitive assessment shows deficits with regard to: episodic memory for verbal information; episodic memory for visuo-spatial memory; selective and sustained attention; basal speed; inhibition; flexibility; and task shifting. In daily life, he experiences memory problems (e.g. forgets to feed his dog, to open his mail and to lock his car). Also he has severe problems with planning and organising (e.g. he often fails to keep appointments and to pay his bills). He receives professional ambulatory support for the problems he experiences in daily life in the form of assistance with his mail and financial issues. This case illustrates a positive association between deficits identified by a cognitive assessment and the experience of problems in daily life. Case B The second case concerns a 54-year-old male who is a former chief executive with a high level of education. He had a recurrent right-sided cerebro vascular accident and was treated for a brain aneurysm. He is divorced, lives independently and has two daughters. His cognitive assessment shows deficits with regard to: episodic memory for verbal information; episodic memory for visuo-spatial memory; selective and sustained attention; basal speed; planning; flexibility; and task shifting. However, in daily life he does not have any evident cognitive problems. This case illustrates that severe deficits identified by a cognitive assessment do not necessarily translate into daily life problems. Case C The third case concerns a 49-year-old female who is a former nurse with a medium level of education. She had a subarachnoidal haemorrhage. She is married and lives with her husband. Her cognitive assessment does not show any deficits. In daily life, however, she has problems with: executive functioning (e.g. using the mobile phone); memory (e.g. recalling previous conversations and appointments); and she experiences difficulties with multi-tasking. 8 Prologue This case illustrates that a normal score on a cognitive assessment does not necessarily indicate the absence of daily life problems. These three patients have cognitive disorders due to brain dysfunction, but each reveals a different association between the results of a cognitive assessment and daily life functioning. These cases give rise to the following questions: • What is the association between cognition and daily life functioning in people suffering from cognitive disorders due to brain dysfunction? • What is the ecological validity of neuropsychological tests? • How can treatment be tailored to the needs of the individual patient? These questions form the basis for the research described in this thesis. 9 Chapter 1 General introduction Chapter 1 Defining the problem A growing number of people worldwide are affected by neurological disorders associated with brain injury and dementia [1]. These brain dysfunctions can lead to physical deficits, as well as to deficits in neuropsychological domains such as cognition, emotion, and behaviour [2, 3]; thus they often have a far-reaching effect on patients’ daily life functioning. The International Classification of Functioning, Disability, and Health (ICF) of the World Health Organization [4], distinguishes three components related to functioning and disability: body function and structure (impairment); activities (limitation) and participation (restriction); and environmental factors (context). Impairments (e.g. concentration loss) can lead to limitations (e.g. not paying attention when someone is talking), and these limitations may lead to restrictions (e.g. not being able to work as a receptionist). Personal and environmental factors may further influence the association between the levels. Figure 1 illustrates the interaction of these components of functioning. However, as reported in case B in Chapter 0, a deficit identified by a neuropsychological test (impairment) does not necessarily indicate a deficit in daily life functioning (restriction). Therefore, the extent to which daily life is affected by brain dysfunction varies from patient to patient. Furthermore, it is unclear what the association is between the domains which are affected in patients with brain dysfunction such as acquired brain injury and dementia. Figure 1. Interaction of components of functioning (adapted from the World Health Organization, 2001) Health Condition (Disorder/Disease) Body Participation Function & Structure Activities (Restriction) (Impairment) (Limitation) Environmental Personal Factors Factors 12 General introduction Association between domains and its importance for research and clinical practice The domains affected in brain dysfunction are measured in several ways. Cognitive deficits are mostly assessed with neuropsychological tests [5], such as the Auditory Verbal Learning Test [6] which measures episodic memory. Emotional problems are usually assessed with questionnaires, such as the Symptom Check List 90 [7], and behavioural problems with informant-based interviews, such as the Neuropsychiatric Inventory [8]. The extent to which any of these domains can explain everyday functioning is unclear. Due to the growing availability of neuroimaging techniques,
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