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Characteristics of institutionalized young onset dementia patients – the BEYOnD study

Published online by Cambridge University Press:  08 October 2014

A.J.M.J. Mulders Open the ORCID record for A.J.M.J. Mulders [Opens in a new window] ,
S.U. Zuidema ,
F.R. Verhey  and
R.T.C.M. Koopmans
A.J.M.J. Mulders*
Affiliation:
Department of Primary and Community Care, Centre for Family Medicine, Geriatric Care and Public Health, Radboud University Nijmegen Medical Centre, Nijmegen, the Netherlands Archipel Care Group, Eindhoven, the Netherlands
S.U. Zuidema
Affiliation:
Department of General Practice, University of Groningen, University Medical Centre Groningen, Groningen, the Netherlands
F.R. Verhey
Affiliation:
School for Mental Health and Neuroscience (MHeNS)/Alzheimer Centre Limburg, Department of Psychiatry and Psychology/MUMC, Maastricht, 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
*
Correspondence should be addressed to: A.J.M.J. Mulders, Department of Primary and Community Care, Centre for Family Medicine, Geriatric Care and Public Health, Radboud University Nijmegen Medical Centre, PO Box 9101, 6500 HB Nijmegen, the Netherlands. Phone: +31-6-38741546; Fax: +31-243541862. Email: Ans.Mulders@radboudumc.nl.
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Abstract

Background:

People with Young Onset Dementia (YOD) have specific needs for care. These people eventually require institutional care, usually delivered by institutions designed for the elderly. The Dutch network of care organizations delivering specialized YOD care offers a unique opportunity to obtain more knowledge of this special population.

Methods:

Our cross-sectional study collected data from 230 people with YOD in eight care homes providing YOD specialized care. Data collected: demographic data, disease duration, dementia subtype, comorbidity, dementia severity (Global Deterioration Scale – GDS), neuropsychiatric symptoms (NPS; Neuropsychiatric Inventory – NPI, Cohen Mansfield Agitation Inventory – CMAI), disease awareness (Guidelines for the Rating of Awareness Deficits – GRAD), need for assistance (hierarchic Activities of Daily Living (ADL) scale – Resident Assessment Instrument – Minimum Data Set (RAI-MDS)).

Results:

The mean age of the residents with YOD in care homes was 60 years and 53% of them were men. There is a large variety of etiologic diagnoses underlying the dementia. Dementia severity was very mild to mild in 18%, moderate in 25%, and severe or very severe in 58% of the participants. The prevalence of NPS was high with 90% exhibiting one or more clinically relevant NPS. Comorbidity was present in more than three quarters of the participants, most frequently psychiatric disorders.

Conclusions:

The institutionalized YOD population is heterogeneous. NPS occur in almost all institutionalized people with YOD, and frequency and severity of NPS are higher than in late onset dementia (LOD) and community-dwelling YOD patients. Care should be delivered in settings accommodating a mixed male and female population, with appropriate, meaningful activities for all individuals. Further research is needed on NPS in YOD, to enhance quality of life and work in specialized YOD-care.

Keywords

young onset dementianursing homelong-term residential careneuropsychiatric symptoms
Type
Research Article
Information
International Psychogeriatrics , Volume 26 , Special Issue 12: young onset dementia , December 2014 , pp. 1973 - 1981
Copyright
Copyright © International Psychogeriatric Association 2014 

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References

Alzheimer's Association (2006). Early Onset Dementia: A National Challenge, A Future Crisis. Available at: http://www.alz.org/national/documents/report_earlyonset_full.pdf; last accessed 18 February 2013.Google Scholar
American Psychiatric Association (2000). Diagnostic and Statistical Manual of Mental Disorders – Text Revision: DSM-IV-TR. Washington, DC: American Psychiatric Association.Google Scholar
Arai, A., Matsumoto, T., Ikeda, M. and Arai, Y. (2007). Do family caregivers perceive more difficulty when they look after patients with early onset dementia compared to those with late onset dementia? International Journal of Geriatric Psychiatry, 22, 1255–1261.Google Scholar
Bakker, C., de Vugt, M. E., Vernooij-Dassen, M., van Vliet, D., Verhey, F. R. J. and Koopmans, R. T. C. M. (2010). Needs in early onset dementia: a qualitative case from the NeedYD study. American Journal of Alzheimers Disease and Other Dementias, 25, 634–640.CrossRefGoogle ScholarPubMed
Bakker, C. et al. (2012a). The use of formal and informal care in early onset dementia: results from the NeedYD study. The American Journal of Geriatric Psychiatry. Epublished ahead of print. doi: 10.1016/j.jagp.2012.10.004 Google Scholar
Bakker, C. et al. (2012b). Predictors of the time to institutionalization in young-versus late-onset dementia: results from the needs in young onset dementia (NeedYD) study. Journal of the American Medical Directors Association, 14, 248–253.Google Scholar
Cohen-Mansfield, J. and Billig, N. (1986). Agitated behaviors in the elderly. I. A conceptual review. Journal of the American Geriatrics Society, 34, 711–721.Google Scholar
Cummings, J. L., Mega, M., Gray, K., Rosenberg-Thompson, S., Carusi, D. A. and Gornbein, J. (1994). The Neuropsychiatric Inventory: comprehensive assessment of psychopathology in dementia. Neurology, 44, 2308–2314.CrossRefGoogle ScholarPubMed
de Jonghe, J. F. and Kat, M. G. (1996). Factor structure and validity of the Dutch version of the Cohen-Mansfield Agitation Inventory (CMAI-D). Journal of the American Geriatrics Society, 44, 888–889.Google Scholar
Fries, B. E., Wodchis, W. P., Blaum, C., Buttar, A., Drabek, J. and Morris, J. N. (2005). A national study showed that diagnoses varied by age group in nursing home residents under age 65. Journal of Clinical Epidemiology, 58, 198–205.CrossRefGoogle ScholarPubMed
Garre-Olmo, J. et al. (2010). Incidence and subtypes of early-onset dementia in a geographically defined general population. Neurology, 75, 1249–1255.Google Scholar
Harvey, R. J., Skelton-Robinson, M. and Rossor, M. N. (2003). The prevalence and causes of dementia in people under the age of 65 years. Journal of Neurology, Neurosurgery & Psychiatry, 74, 1206–1209.Google Scholar
Ikejima, C. et al. (2009). Prevalence and causes of early-onset dementia in Japan: a population-based study. Stroke, 40, 2709–2714.Google Scholar
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, 150–155.Google Scholar
Lange, R. T., Hopp, G. A. and Kang, N. (2004). Psychometric properties and factor structure of the neuropsychiatric inventory nursing home version in an elderly neuropsychiatric population. International Journal of Geriatr Psychiatry, 19, 440–448.CrossRefGoogle Scholar
Leontjevas, R., Leontjevas, R., van Hooren, S., Waterink, W. and Mulders, A. (2009). Apathy and depressive mood in nursing home patients with early-onset dementia. American Journal of Alzheimer's Disease & Other Dementias, 24, 341–348.Google Scholar
Miller, R. J., Snowdon, J. and Vaughan, R. (1995). The use of the Cohen-Mansfield Agitation Inventory in the assessment of behavioral disorders in nursing homes. Journal of the American Geriatrics Society, 43, 546–549.Google Scholar
Miyoshi, K. (2009). What is ‘early onset dementia’? Psychogeriatrics, 9, 67–72.Google Scholar
Morris, J. N., Fries, B. E. and Morris, S. A. (1999). Scaling ADLs within the MDS. The Journals of Gerontology. Series A, Biological Sciences and Medical Sciences, 54, M546–M553.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, 1136–1139.Google Scholar
Salari, M. A. T. and Plaisier, A. T. (2004). Landelijk Zorgprogramma Jong Dementerenden. Utrecht, the Netherlands: Stuurgroep Jong Dementerenden.Google Scholar
van Vliet, D., de Vugt, M. E., Bakker, C., Koopmans, R. T. C. M. and Verhey, F. R. J. (2010). Impact of early onset dementia on caregivers: a review. International Journal of Geriatric Psychiatry, 25, 1091–1100.Google Scholar
van Vliet, D. et al. (2012). Prevalence of neuropsychiatric symptoms in young-onset compared to late-onset Alzheimer's disease – part 1: findings of the two-year longitudinal NeedYD-study. Dementia and Geriatric Cognitive Disorders, 34, 319–327.Google Scholar
Verhey, F. R., Ponds, R. W., Rozendaal, N. and Jolles, J. (1995). Depression, insight, and personality changes in Alzheimer's disease and vascular dementia. Journal of Geriatric Psychiatry and Neurology, 8, 23–27.Google Scholar
Verhey, F. R., Rozendaal, N., Ponds, R. W. and Jolles, J. (1993). Dementia, awareness and depression. Internationa Journal of Geriatric Psychiatry, 8, 851–856.CrossRefGoogle Scholar
Werner, P., Stein-Shvachman, I. and Korczyn, A. D. (2009). Early onset dementia: clinical and social aspects. International Psychogeriatrics, 21, 631–636.Google Scholar
Wetzels, R., Zuidema, S., Jansen, I., Verhey, F. and Koopmans, R. (2010a). Course of neuropsychiatric symptoms in residents with dementia in long-term care institutions: a systematic review. International Psychogeriatrics, 22, 1040–1053.Google Scholar
Wetzels, R. B., Zuidema, S. U., de Jonghe, J. F., Verhey, F. R. and Koopmans, R. T. (2010b). Course of neuropsychiatric symptoms in residents with dementia in nursing homes over 2-year period. The American Journal of Geriatric Psychiatry, 18, 1054–1065.Google Scholar
Wetzels, R. B., Zuidema, S. U., de Jonghe, J. F., Verhey, F. R. and Koopmans, R. T. (2010c). Determinants of quality of life in nursing home residents with dementia. Dementia and Geriatric Cognitive Disorders, 29, 189–197.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 29 December 2013.Google Scholar
Wood, S. et al. (2000). The use of the neuropsychiatric inventory in nursing home residents. Characterization and measurement. The American Journal of Geriatric Psychiatry, 8, 75–83.Google Scholar
Zanetti, O. et al. (1999). Insight in dementia: when does it occur? Evidence for a nonlinear relationship between insight and cognitive status. The Journals of Gerontology. Series B, Psychological Sciences and Social Sciences, 54, P100–P106.CrossRefGoogle ScholarPubMed
Zuidema, S. U., Derksen, E., Verhey, F. R. and Koopmans, R. T. (2007). Prevalence of neuropsychiatric symptoms in a large sample of Dutch nursing home patients with dementia. International Journal of Geriatric Psychiatry, 22, 632–638.CrossRefGoogle Scholar