GRIP on neuropsychiatric symptoms in young-onset dementia: The BEYOND-II study
Projectomschrijving
Moeilijk hanteerbaar gedrag komt veel voor bij verpleeghuisbewoners met dementie op jonge leeftijd, met gevolgen voor het welzijn van de persoon met dementie en de werkbelasting van zorgteams. De GRIP studie wordt het effect van GRIP onderzocht.
Doel
In dit project werd het effect van een interventie gericht op de behandeling van moeilijk hanteerbaar gedrag onderzocht.
Aanpak
Het betreft een interventie studie.
Resultaten
Er werd geen afname van moeilijk hanteerbaar gedrag, medicatiegebruik en werkbelasting gevonden.
Agitatie/agressie en apathie kwamen het meest voor, 67% gebruikte psychofarmaca, waarvan 35% antidepressiva. Zorgmedewerkers hadden bij aanvang een laag risico op burnout en waren tevreden met hun werk(-druk), waardoor er mogelijk weinig ruimte voor verbetering was. Er werd overlap ervaren tussen de huidige werkwijze en de interventie, mogelijk werd er al methodisch gewerkt. Het implementeren van interventies is complex en afhankelijk van veel factoren, waardoor interventies vaak niet volledig uitgevoerd worden zoals bedoeld. Ook in deze studie was de implementatie niet optimaal.
Meer informatie
- Betere zorg voor jonge mensen met dementie bij probleemgedrag - interview met de projectleider Christian Bakker
- Meer informatie over GRIP op probleemgedrag
- Zelf aan de slag met GRIP op probleemgedrag via werkformulieren en het werkboek
- Thema Dementie | ZonMw
Verslagen
Eindverslag
Samenvatting van de aanvraag
Background In approximately 6-9% of people with dementia in the Netherlands the first symptoms occur before the age of 65. People with young-onset dementia (PwYOD) are confronted with specific issues, such as a delay in diagnosis and high levels of unmet care needs. Unmet care needs have been found to be related to high rates of neuropsychiatric symptoms (NPS) in young-onset dementia (YOD). Progression of dementia increases the risk of institutionalization in a long-term care facility. Our NEEDs in Young-onset Dementia (NEEDYD)-study showed that 33% of the patients was institutionalized during the two-year follow-up period. Our Behaviour and Evolution of Young-onset Dementia (BEYOND)-study in YOD nursing home (NH) residents found exceptionally high prevalence rates of NPS and psychotropic drug use in these younger residents. NPS are associated with a loss of quality of life in residents as well as high costs and increased workload for Nursing Home (NH) staff. Currently, only generic guidelines for the management of NPS are available, which do not address the specific characteristics and care needs of YOD residents. Aim This is the first project to develop and implement a multi-component care program for the management of NPS in YOD NH residents and determine its effectiveness. Method The BEYOND-II study is an intervention study consisting of the following five consecutive workpackages: (1) The design of a care program for the management of NPS in PwYOD residing in special care units in NH’s, based on an existing care program for the management of NPS in late onset dementia, ‘The Grip on challenging behaviour’ program. The care program will be adapted and tailored using recent YOD literature and key-findings of the NEEDYD-study and the BEYOND-I study (Mulders, submitted) as well as using clinical experience. The care program will be reviewed by a panel of caregivers of PwYOD residing in NH’s and an expert panel of the Dutch YOD Knowledge Centre (DKC). (2) The development of an enhanced implementation strategy for the care program. Next to interventions aimed at improving intrinsic motivation of professionals using the care program, the implementation strategy will include an intervention to increase extrinsic motivation. Unit managers will be educated in implementation knowledge and encouraged through their position in the management line, to increase motivation of involved professionals and address organizational barriers as well as use more binding agreements with committed NH management and professionals. Also, to improve the implementation and the use of the care program the program will be digitalized and e-learning modules for the nursing staff will be developed. (3) An evaluation of the effectiveness of the care program using a stepped wedge design. This design allows different Special Care Units (SCU) to randomly switch from control to intervention at different time points and assuring that all SCU’s eventually receive the program. Ten YOD SCU’s with 20 residents each, in three clusters with 4 measurements will be included in the study. Deceased and discharged residents are replaced by newly admitted residents. The control condition, usual care, will also provide multidisciplinary care (standard in Dutch NHs), but without the training and the implementation of the care program. The outcome will be NPS as assessed with the Cohen Mansfield Agitation Inventory (CMAI) and the Neuropsychiatric Inventory-NH version (NPI-NH). The CMAI will be used in primary effect analyses. (4) A process evaluation comprising the evaluation of the internal and external validity as well as barriers and facilitators in the implementation process of the care program. Furthermore, a cost-consequence analysis of the care program will be performed. (5) The development of a blueprint for the design of a home based care program for the management of NPS in YOD. When the effectiveness of the care program in YOD SCU’s has been established the elements of the care program will be discussed in two panel groups: (1) a panel with YOD caregivers, and (2) a panel with health care professionals. The panel discussions will be used to develop a blueprint that can be used for the design of a home based care program. Results will be disseminated to YOD care organisations, political stakeholders, vocational/specialist training of elderly care physicians, psychologists and nurses and through scientific papers in national and international journals.