Treatment approaches in patients with (very) severe challenging behavior: the Waalbed-V-study

Introduction

Challenging behavior like agitation, aggression or vocally disruptive behaviors are highly prevalent in nursing home patients with dementia. Within this group there is a small group of less than 1% with very severe or extreme challenging behavior. A recent mixed-methods study resulted in the following group-description: ‘The group of patients with dementia and severe challenging behavior consists of people with many careproblems as a result of the dementia, who show several types of behavior that are very severe because of the frequency, intensity, and long duration. Additionally, the behavior is hard to manage and unpredictable. The behavior can be caused or enhanced by patient-related factors like a very high sensitivity to stimuli, or comorbid, non dementia-related, psychiatric symptoms, or by environmental factors. Moreover, the behavior leads to danger and distress for both the patient and/or their environment, and to shyness of action and burden of the environment.’

Treatment approaches

There are hardly any studies on treatment approaches in this group of patients. In clinical practice psychotropic drugs are often prescribed. To date, we have no data of the course and determinants of psychotropic drug use in challenging behavior special care units and whether or not challenging behavior special care units succeed in discontinuning psychotropic drugs.

Also, in clinical practice, enclosure beds are often applied in patients with severe challenging behavior. The intended impact, based on practice-based experience, is to recover the diurnal rhythm and prevent nocturnal agitation and falls. These practice-based experiences however are not substantiated by clinical studies. Moreover, we do not know how often these beds are applied or whether patients show resistance to this kind of physical isolation.

Moreover, in case of refractory challenging sometimes continuous palliative sedation is applied. However, recent studies have shown that electroconvulsive therapy (ECT) might be effective as a treatment for challenging behavior in older patients with dementia. Despite the promising effectiveness of ECT for severe challenging behaviour in dementia, ECT is hardly considered for dementia patients in the Netherlands and if so, by a minority of professionals, only for depression-related symptoms. There is an urgent need for effectiveness studies on the application of ECT in case of extreme of refractory CB in dementia. The aim of this research-project is to address the abovementioned treatment approaches.

Research questions

We formulated the following research questions:

1. What are the course and determinants of psychotropic drug use in a sample of patients with (very) severe challenging behavior admitted to challenging behavior special care units?
2. How often are enclosure beds applied on (challenging behavior) dementia special care units, what are the reasons for application and what is the course of the challenging behavior after application?
3. What is the effectiveness of ECT in patients with (very) severe challenging behavior as well as the (perceived) patient, relatives and staff burden?

Mixed methods

These research questions will be answered in a mixed methods project that consists of 3 parts:

1. an observational study to answer the first research question
2. a survey and an observational study to answer research question two
3. a single case experimental design (multiple baseline baseline) evaluating the effectiveness of ECT, augmented with a survey of the burden for patients, relatives and staff