Grip op probleemgedrag bij jonge mensen met een dementie: de Beyond-II studie

The Behavior in Young-Onset Dementia-II study focuses on improving the detection, analysis, treatment and evaluation of challenging behavior in people with young-onset dementia residing in nursing homes. This study consists of five consecutive workpackages. In workpackage 1 the existing care program ‘Grip on challenging behavior’ will be adapted and tailored for use in people with young-onset dementia residing in nursing homes. In workpackage 2 an enhanced implementation strategy will be developed, which contains a digitalization of the care program. In workpackage 3 the effectiveness of the care program will be evaluated using a stepped wedge design. In 18 months time the care program will be implemented on ten special care units for people with young-onset dementia in the Netherlands. The special care units will randomly switch from control to intervention condition, eventually all special care units will receive the care program. Next, the feasibility, satisfaction and actual use of the care program will be determined and the consequences of the costs of the implementation will be analyzed (workpackage 4). In workpackage 5 a blueprint for a care program at home will be developed.

Rates of neuropsychiatric symptoms are extremely high in institutionalized people with young-onset dementia. Neuropsychiatric symptoms are associated with reduced quality of life of residents and higher caregiver burden. Therefore, the Grip care program on challenging behavior will be adapted to the specific characteristics and needs of people with young-onset dementia. This will result in a multi-component intervention on the reduction of neuropsychiatric symptoms, which consists of the detection, analyses, treatment and evaluation of neuropsychiatric symptoms. We assume that there is a significant effect of the multi-component intervention on the reduction of neuropsychiatric symptoms, especially agitation and aggression in people with young-onset dementia residing on young-onset dementia special care units.

T0 (September 2015): All variables/outcomes will be assessed.

T1 – T3 (interval every 6 months starting from T0): all variables will be assessed with the exception of sociodemographic variables, length of stay in the NH, dementia type and the environmental factors.

In this intervention study, the adapted Grip on challenging behavior care program will be implemented at ten YOD SCU's. A stepped wedge design will be used in which eventually all special care units will work according to the care program. The special care units will be randomly divided into three clusters. Cluster 1 will be the first to start working with the care program. They will receive psycho-education on specific characteristics of people with young-onset dementia and a training on how to use the care program. Cluster 2 and 3 are in the control condition and will receive care as usual. After six months Cluster 1 will receive a follow up training session. Six months after start of the intervention study cluster 2 will start using the care program, cluster 3 remains in the control condition at that time. Finally, cluster 3 will start using the care program, which will be 12 months after start of the intervention study. The total duration of the intervention study will be 18 months.