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Behavior and Evolution of Young ONset Dementia part 2 (BEYOND-II) study: an intervention study aimed at improvement in the management of neuropsychiatric symptoms in institutionalized people with young onset dementia

Published online by Cambridge University Press:  09 June 2017

J. C. L. van Duinen-van den IJssel
Affiliation:
Department of Primary and Community Care, Centre for Family Medicine, Geriatric Care and Public Health, Radboud University Nijmegen, Medical Centre, Nijmegen, the Netherlands Radboud Alzheimer Centre, Nijmegen, the Netherlands
B. Appelhof
Affiliation:
Department of Primary and Community Care, Centre for Family Medicine, Geriatric Care and Public Health, Radboud University Nijmegen, Medical Centre, Nijmegen, the Netherlands Radboud Alzheimer Centre, Nijmegen, the Netherlands Archipel, Landrijt, Knowledge Centre for Specialized Care, Eindhoven, the Netherlands
S. A. Zwijsen
Affiliation:
Department of General Practice and Elderly Care Medicine, Amsterdam Public Health research institute, VU University Medical Center, Amsterdam, the Netherlands
M. Smalbrugge
Affiliation:
Department of General Practice and Elderly Care Medicine, Amsterdam Public Health research institute, VU University Medical Center, Amsterdam, the Netherlands
F. R. J. Verhey
Affiliation:
School for Mental Health and Neuroscience, Alzheimer Centre Limburg, Maastricht University Medical Centre+, Maastricht, the Netherlands
M. E. de Vugt
Affiliation:
School for Mental Health and Neuroscience, Alzheimer Centre Limburg, Maastricht University Medical Centre+, Maastricht, the Netherlands
S. U. Zuidema
Affiliation:
Department of General Practice and Elderly Care Medicine, University of Groningen, University Medical Centre Groningen, Groningen, the Netherlands
R.T.C.M Koopmans
Affiliation:
Department of Primary and Community Care, Centre for Family Medicine, Geriatric Care and Public Health, Radboud University Nijmegen, Medical Centre, Nijmegen, the Netherlands Radboud Alzheimer Centre, Nijmegen, the Netherlands De Waalboog “Joachim en Anna”, Centre for Specialized Geriatric Care, Nijmegen, the Netherlands
C. Bakker*
Affiliation:
Department of Primary and Community Care, Centre for Family Medicine, Geriatric Care and Public Health, Radboud University Nijmegen, Medical Centre, Nijmegen, the Netherlands Radboud Alzheimer Centre, Nijmegen, the Netherlands Centre for Specialized Care in Young Onset Dementia, Florence, Mariahoeve, the Hague, the Netherlands
*
Correspondence should be addressed to: Christian Bakker, PhD, MSc, Department of Primary and Community Care, Centre for Family Medicine, Geriatric Care and Public Health, Radboud University Medical Centre, Nijmegen, P.O. Box 9101, 6500 HB Nijmegen, theNetherlands. Phone: 024-3655307. Email: [email protected].

Abstract

Background:

Both neuropsychiatric symptoms (NPS) and psychotropic drug use (PDU) are common in institutionalized People with Young Onset Dementia (PwYOD) and can produce negative outcomes such as reduced quality of life and high workload. In community-dwelling PwYOD, NPS are found to be associated with unmet care needs. This emphasizes the importance of a care program for the management of NPS in institutionalized PwYOD that also addresses unmet care needs and PDU. The objectives of the Behavior and Evolution of Young ONset Dementia part 2 (BEYOND-II) study are to develop a care program for the management of NPS in institutionalized PwYOD and to evaluate its effectiveness.

Methods:

The care program consists of an educational program combined with an intervention to manage NPS with the following five steps: the evaluation of psychotropic drug prescription, detection, analysis (including the detection of unmet needs), treatment and the evaluation of NPS. A stepped wedge design will be used to evaluate its effectiveness. The primary outcomes are agitation and aggression and other NPS. The secondary outcomes are PDU, quality of life, the workload of nursing staff and job satisfaction. Additionally, a process analysis and a cost-consequence analysis will be conducted.

Conclusions:

The study protocol of the Beyond-II study describes the development, implementation and evaluation of a care program for the management of NPS in institutionalized PwYOD. This care program provides a structured method for the management of NPS, in which unmet needs and PDU are also addressed.

Type
Protocol-only paper
Copyright
Copyright © International Psychogeriatric Association 2017 

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Footnotes

Trial Registration: Netherlands Trial Register (NTR): NTR5018

References

American Psychiatric Association (2000). Diagnostic and Statistical Manual of Mental Disorders – Text revision: DSM-IV-TR. Washington, DC: American Psychiatric Association.Google Scholar
Bakker, C. et al. (2014). The relationship between unmet care needs in young-onset dementia and the course of neuropsychiatric symptomps: a two year follow-up study. International Psychogeriatrics, 26, 19912000.Google Scholar
Ballard, C. and Howard, R. (2006). Neuroleptic drugs in dementia: benefits and harm. Nature Reviews Neuroscience, 7, 492500.CrossRefGoogle ScholarPubMed
Brodaty, H., Draper, B. M. and Low, L. F. (2003). Behavioural and psychological symptoms of dementia: a seven-tiered model of service delivery. Medical Journal of Australia, 178, 231234.CrossRefGoogle ScholarPubMed
Brown, C. A. and Lilford, R. J. (2006). The stepped wedge trial design: a systematic review. BMC Medical Research Methodology, 6, 54.CrossRefGoogle ScholarPubMed
Cohen-Mansfield, J., Libin, A. and Marx, M. S. (2007). Nonpharmacological treatment of agitation: a controlled trial of systematic individualized intervention. Journals of Gerontology: Series A, 62, 908916.Google ScholarPubMed
Cohen-Mansfield, J., Marx, M. S. and Rosenthal, A. S. (1989). A description of agitation in a nursing home. Journal of Gerontology, 44, M77–M84.Google Scholar
Davison, T. E., Hudgson, C., McCabe, M. P., George, K. and Buchanan, G. (2007). An individualized psychosocial approach for “treatment resistant” behavioral symptoms of dementia among aged care residents. International Psychogeriatrics, 19, 859873.Google Scholar
de Jonghe, J. F. M. (1996). Factors structure and validity of the dutch version of the cohen mansfield agitation inventory (CMAI-D). Journal of the American Geriatrics Society, 44, 888889.Google Scholar
Draper, B. et al. (2016). Time to diagnosis in young-onset dementia and its determinants: the INSPIRED study. International Journal of Geriatric Psychiatry, 31, 12171224.Google Scholar
Ettema, T. P., Droes, R. M., de Lange, J., Mellenbergh, G. J. and Ribbe, M. W. (2007a). QUALIDEM: development and evaluation of a dementia-specific quality of life instrument – scalability, reliability and internal structure. International Journal of Geriatric Psychiatry, 22, 549556.Google Scholar
Ettema, T. P., Droes, R. M., de Lange, J., Mellenbergh, G. J. and Ribbe, M. W. (2007b). QUALIDEM: development and evaluation of a dementia-specific quality of life instrument – validation. International Journal of Geriatric Psychiatry, 22, 424430.CrossRefGoogle ScholarPubMed
Gauthier, S. et al. (2010). Management of behavioral problems in Alzheimer's disease. International Psychogeriatrics, 22, 346372.Google Scholar
Gorno-Tempini, M. L. et al. (2011). Classification of primary progressive aphasia and its variants. Neurology, 76, 10061014.CrossRefGoogle ScholarPubMed
Hussey, M. A. and Hughes, J. P. (2007). Design and analysis of stepped wedge cluster randomized trials. Contemporary Clinical Trials, 28, 182191.CrossRefGoogle ScholarPubMed
Kat, M. G., de Jonghe, J. F., Aalten, P., Kalisvaart, C. J., Droes, R. M. and Verhey, F. R. (2002). Neuropsychiatric symptoms of dementia: psychometric aspects of the Dutch Neuropsychiatric Inventory (NPI). Tijdschrift Voor Gerontologie en Geriatrie, 33, 150155.Google Scholar
Koopmans, R. T., Lavrijsen, J. C., Hoek, J. F., Went, P. B. and Schols, J. M. (2010). Dutch elderly care physician: a new generation of nursing home physician specialists. Journal of the American Geriatrics Society, 58, 18071809.CrossRefGoogle ScholarPubMed
Leontjevas, R., Gerritsen, D. L., Koopmans, R. T., Smalbrugge, M. and Vernooij-Dassen, M.J. (2012). Process evaluation to explore internal and external validity of the “Act in Case of Depression” care program in nursing homes. Journal of the American Medical Directors Association, 13, 448e481448e488.Google Scholar
Lintern, T. (2001). Quality in Dementia Care: Evaluating Staff Attitudes and Behaviour. Bangor: University of wales.Google Scholar
Livingston, G., Johnston, K., Katona, C., Paton, J. and Lyketsos, C. G. (2005). Systematic review of psychological approaches to the management of neuropsychiatric symptoms of dementia. American Journal of Psychiatry, 162, 19962021.Google Scholar
Maslach, C. and Jackson, S. E. (1986). The Maslach Burnout Inventory Manual. Palo Alto, CA: Consulting Psychology Press, Inc.Google Scholar
Mauskopf, J. A., Paul, J. E., Grant, D. M. and Stergachis, A. (1998). The role of cost-consequence analysis in healthcare decision-making. Pharmacoeconomics, 13, 277288.Google Scholar
McKeith, I. G. (2006). Consensus guidelines for the clinical and pathologic diagnosis of dementia with Lewy bodies (DLB): report of the consortium on DLB International Workshop. Journal of Alzheimer's Disease, 9, 417423.CrossRefGoogle Scholar
McKhann, G. M. et al. (2011). The diagnosis of dementia due to Alzheimer's disease: recommendations from the National Institute on Aging-Alzheimer's Association workgroups on diagnostic guidelines for Alzheimer's disease. Alzheimer's & Dementia, 7, 263269.Google Scholar
Mulders, A. J. M. J., Zuidema, S. U., Verhey, F. R. and Koopmans, R. T. C. M. (2014). Characteristics of institutionalized young onset dementia patients – The BEYOnD study. International Psychogeriatrics, 26, 19731981.CrossRefGoogle Scholar
Mulders, A. J. M. J., Fick, I. W. F., Bor, H., Verhey, F. R. J., Zuidema, S. U. and Koopmans, R. T. C. M. (2016). Prevalence and correlates of neuropsychiatric symptoms in nursing home patients with young-onset dementia: The BEYOnD Study. Journal of American Medical Directors Association, 17, 495500.Google Scholar
Murman, D. L., Chen, Q., Powell, M. C., Kuo, S. B., Bradley, C. J. and Colenda, C. C. (2002). The incremental direct costs associated with behavioral symptoms in AD. Neurology, 59, 17211729.Google Scholar
Nederlands Instituut van Psychologen (NIP) (2013). Handreiking Psychologische Hulpverlening bij Gedragsproblemen bij Dementie. Amsterdam: NIP, SPO.Google Scholar
Orrell, M. and Hancock, G. (2004). CANE: Camberwell Assessment of Need for the Elderly. London: Gaskell.Google Scholar
Rascovsky, K. et al. (2011). Sensitivity of revised diagnostic criteria for the behavioural variant of frontotemporal dementia. Brain, 134, 24562477.Google Scholar
Reisberg, B., Ferris, S. H., de Leon, M. J. and Crook, T. (1982). The Global Deterioration Scale for assessment of primary degenerative dementia. The American Journal of Psychiatry, 139, 11361139.Google Scholar
Reynolds, T. et al. (2000). Camberwell Assessment of Need for the Elderly (CANE); development, validity, and reliability. Britisch Journal of Psychiatry, 176, 444452.CrossRefGoogle ScholarPubMed
Roman, G. C. et al. (1993). Vascular dementia: diagnostic criteria for research studies. Report of the NINDS-AIREN international workshop. Neurology, 43, 250260.Google Scholar
Rossor, M. N., Fox, N. C., Mummery, C. J., Schott, J. M. and Warren, J. D. (2010). The diagnosis of young-onset dementia. Lancet Neurology, 9, 793806.Google Scholar
Schaufeli, W. and Van Dierendonck, D. (2000). UBOS, Utrecht Burnout Scale: Manual. Zeist, the Netherlands: SWETS Test Publishers.Google Scholar
Schneider, L. S., Dagerman, K. and Insel, P. S. (2006). Efficacy and adverse effects of atypical antipsychotics for dementia: meta-analysis of randomized, placebo-controlled trials. American Journal of Geriatric Psychiatry, 14, 191210.Google Scholar
Van der Doef, M. and Maes, S. (1999). The Leiden quality of work questionnaire: its construction, factor structure, and psychometric qualities. Psychological Reports, 85, 963970.Google Scholar
van der Spek, K. et al. (2013). PROPER I: frequency and appropriateness of psychotropic drugs use in nursing home patients and its associations: a study protocol. BMC Psychiatry, 13, 17.Google Scholar
van der Spek, K. et al. (2015). A reliable and valid index was developed to measure appropriate psychotropic drug use in dementia. Journal of Clinical Epidemiology, 68, 903912.CrossRefGoogle ScholarPubMed
Van Vliet, D. et al. (2013). Time to diagnosis in young-onset dementia as compared with late-onset dementia. Psychological Medicine, 43, 423432.CrossRefGoogle ScholarPubMed
Verenso (2008). Richtlijn Probleemgedrag – met Herziene Medicatieparagraaf. Utrecht: Verenso.Google Scholar
Verpleegkundigen & Verzorgenden Nederland (V&VN) (2005). Richtlijn Omgaan met Gedragsproblemen bij Patiënten met Dementie. Nijmegen: V&VN.Google Scholar
Wetzels, R. B., Zuidema, S. U., de Jonghe, J. F., Verhey, F. R. and Koopmans, R. T. (2010). Determinants of quality of life in nursing home residents with dementia. Dementia and Geriatric Cognitive Disorders, 29, 189197.CrossRefGoogle ScholarPubMed
WHO (2012). Dementia: A Public Health Priority. Geneva, Switzerland: World Health Organization. Available at: http://www.who.int/mental_health/publications/dementia_report_2012/en/; last accessed 7 march 2016.Google Scholar
Wood, S. et al. (2000). The use of the neuropsychiatric inventory in nursing home residents. Characterization and measurement. American Journal of Geriatric Psychiatry, 8, 7583.Google Scholar
World Health Organisation Collaborating Centre for Drug Statistics Methodology (1997). Anatomical Therapeutical Chemical (ATC) Classification Index Including Defined Daily Doses (DDDs) for Plain Substances. Oslo: World Health Organisation Collaborating Centre for Drug Statistics Methodology.Google Scholar
Zuidema, S. U. et al. (2011). Assessing neuropsychiatric symptoms in nursing home patients with dementia: reliability and reliable change index of the Neuropsychiatric Inventory and the cohen-mansfield agitation inventory. International Journal of Geriatric Psychiatry, 26, 127134.Google Scholar
Zuidema, S. U., de Jonghe, J. F., Verhey, F. R. and Koopmans, R. T. (2007). Agitation in Dutch institutionalized patients with dementia: factor analysis of the Dutch version of the cohen-mansfield agitation inventory. Dementia and Geriatric Cognitive Disorders, 23, 3541.Google Scholar
Zuidema, S. U., de Jonghe, J. F., Verhey, F. R. and Koopmans, R. T. (2010). Environmental correlates of neuropsychiatric symptoms in nursing home patients with dementia. International Journal of Geriatric Psychiatry, 25, 1422.CrossRefGoogle ScholarPubMed
Zwijsen, S. A. et al. (2011). Grip on challenging behaviour: a multidisciplinary care programme for managing behavioural problems in nursing home residents with dementia. Study protocol. BMC Health Services Research, 11, 16.Google Scholar
Zwijsen, S. A. et al. (2014b). Nurses in distress? An explorative study into the relation between distress and individual neuropsychiatric symptoms of people with dementia in nursing homes. International Journal of Geriatric Psychiatry, 29, 384391.Google Scholar
Zwijsen, S. A. et al. (2014c). Coming to grips with challenging behavior: a cluster randomized controlled trial on the effects of a multidisciplinary care program for challenging behavior in dementia. Journal of the American Medical Directors Association, 15, 531.e531– e531.e510.Google Scholar
Zwijsen, S. A., Gerritsen, D. L., Eefsting, J. A., Hertogh, C. M., Pot, A. M. and Smalbrugge, M. (2014a). The development of the grip on challenging behaviour dementia care programme. International Journal Palliative Nursing, 20, 1521.Google Scholar
Zwijsen, S. A., Gerritsen, D. L., Eefsting, J. A., Smalbrugge, M., Hertogh, C. M. and Pot, A. M. (2015). Coming to grips with challenging behaviour: a cluster randomised controlled trial on the effects of a new care programme for challenging behaviour on burnout, job satisfaction and job demands of care staff on dementia special care units. International Journal of Nursing Studies, 52, 6874.CrossRefGoogle ScholarPubMed