Altered awareness and challenging behavior in different brain disorders: the missing link

BACKGROUND AND PROBLEM DEFINITION. Awareness constitutes a fundamental aspect of human subjective experience, but becomes particularly salient when it is disrupted, as can be the case with neurodegenerative disorders, like Alzheimer’s disease (AD), Huntington's disease (HD) and Korsakoff's syndrome (KS). Although these illnesses vary considerably, in all three patient groups alterations in awareness can occur. Due to the altered awareness patients may under-estimate cognitive impairment and over-estimate abilities, deny behavioral change and may be limited in taking the perspective of another person. Likely, these alterations in awareness may hamper social-decision making, defined as decisions that affect others as well as ourselves and that are therefore typically informed by both self and other-regarding preferences. At some point the concept of a shared world between patient and carers is lost. As a result, the behavior of these patients can easily be misinterpreted and wrong assumptions are likely to be made, which constitute a large part of the “challenge” that their behavior causes. Scientists and practitioners believe that adapting care to the world of experience of people with a brain disorder may offer opportunities to diminish challenging behavior and may also help to improve or support decision-making abilities. However, the relationship between altered awareness, challenging behavior and decision-making abilities has received hardly any attention in research on AD, KS and HD, even though this lack of information might very well explain the limited effectiveness of current psychosocial approaches to reduce challenging behavior. RESEARCH OBJECTIVE The overarching goal of this project is to explore the relationship between altered awareness, challenging behavior and social decision-making abilities in people with AD, HD and KS. Our secondary research aim is to translate the gained knowledge to everyday practice by developing educational materials for professional and family caregivers to educate and inform them on altered awareness in these three brain disorders. STUDY DESIGN/METHODS This will be a mixed method study. The work will be divided in four work packages (WP). In WP1, we use existing quantitative datasets on HD and KS to assess the prevalence and nature of altered awareness in relationship to challenging behavior. Through network-analysis of the datasets, we aim to determine network components (e.g. variables such as demographics, psychotropic drugs prescription, disease progression) and dynamics that are central to altered awareness and challenging behavior. This will increase our knowledge on generic and more disease specific awareness profiles. Second, we will explore how patients with AD, HD and KS and their caregivers, both formal and informal, experience altered awareness and how this might result in challenging behavior and influence decision-making abilities (WP 2). Interviews and focus groups will be conducted to gather this information. Next, we will assess the relationship between social decision-making abilities and challenging behavior in AD, HD, and KS (WP 3). To this end, we will use different social interaction games and questionnaires. As in WP 1 we will deploy network analysis to investigate the different relationships between our variables of interest. DELIVERABLES Finally, we plan to disseminate the acquired knowledge to patients, caregivers, family members and health care professionals to increase the knowledge and improve care (WP 4). Together with the section (GERION) of our department (General Practice & Elderly care Medicine) that provides the vocational training program for elderly care physicians and health care psychologists, we will develop educational programs based on the results of the studies and on implementation into LTCF. The Universitair Netwerk Ouderenzorg; UNO-VUmc and our implementation expert will take the lead in this implementation. Explanation to and education of patient, family and caregivers might flip the coin from: “he is always lying” to “aha, this is a sort of symptom of the disease”, fostering mutual understanding. The findings of the different parts of the study will be published in scientific journals and the whole project will result in a PhD thesis.