Focussen bij mensen met de gedragsvariant van frontotemporale dementie

The aim of this study is to tailor and pilot an existing intervention for the management of disinhibited behavior in people with the behavioral variant of frontotemporal dementia. This behavior has a negative impact on the well-being of the affected person and is experienced as an important challenge by those involved in their care as well. In daily practice the intervention seems to have a positive impact on these outcomes. However, the underlying mechanisms are still unknown. In part I of this study the theoretical underpinnings of the intervention are explored by using observations, a systematic search of the literature and a panel discussion with frontotemporal dementia-experts. In part II of the study these findings are used to improve the intervention and to develop a manual and training program for health care professionals. Subsequently, the intervention will be implemented in 2 young-onset dementia special care units (YOD SCU’s) and a multiple case study will be carried out to evaluate the intervention. Also, a process evaluation will be carried out and an implementation guideline will be developed.

The prevalence of disinhibited behavior is high in institutionalized people with the behavioral variant of frontotemporal dementia. Disinhibited behavior is associated with reduced well-being of residents and is experienced as an important challenge by those involved in the care for these residents. The intervention Focussen will be adapted, a manual and training program will be developed and the intervention will be applied. We assume that there is a positive effect of the intervention on: 1) specific disinhibited behaviors (established in advance to the multiple case study during a visitation meeting, behavioral visit or multidisciplinary consultation), 2) the well-being of residents with the behavioral variant of frontotemporal dementia, 3) the moments of intervention by health care professionals and 4) psychotropic drug use and the use of pro re nata medication in particular.

T0:
- Relevant medical history, dementia severity, cognitive functions, neuropsychiatric symptoms, disinhibition and use of psychotropic drugs

T1-T5:
- Specific disinhibited behavior, well-being, intervention moments by health care professionals

T6:
- Use of psychiatric drugs

In this intervention study, the adapted intervention ‘Focusing in the behavioral variant of frontotemporal dementia’ will be implemented at two YOD SCU's. As a part of the intervention health care professionals will be trained in the use of the intervention method. The main elements of the method are the principles ‘volgen’ and ‘sturen’ (monitoring and guiding) the behavior of the affected resident. ‘Volgen’ means you do not intervene but monitor the behavior of the resident in order to get an impression of his/her current condition. When you notice someone is able to focus his/her attention on you, you can start to guide the residents’ behavior (‘sturen’). Several ways of ‘sturen’ can be applied, among these are focusing on achieving a daily rhythm, focusing on specific sensory information, focusing on one activity, filtering unwanted sensory information and adhering to agreements. ‘Volgen’ and ‘sturen’ are used alternately and attuned to the current situation of the resident. In advance to the multiple case study health care professionals will establish the specific disinhibited behaviors of a resident and how to best intervene according to the principles of the method Focusing. These agreements will be registered in a personal treatment plan. Subsequently six residents will receive their personal approach (‘the intervention’) intermittently at several time points during a period of five days.