Dementia in people with severe/profound intellectual (and multiple) disabilities: Applicability of items in dementia screening instruments for people with intellectual disabilities

Maureen B.G. Wissing; Roos Dijkstra; Ina A. van der Wal; Esther S. Grootendorst; Johannes S.M. Hobbelen; Annette A.J. van der Putten; Peter P. De Deyn; Aly Waninge; Alain D. Dekker

doi:10.1080/19315864.2022.2111737

Dementia in people with severe/profound intellectual (and multiple) disabilities: Applicability of items in dementia screening instruments for people with intellectual disabilities

Maureen B.G. Wissing, Roos Dijkstra, Ina A. van der Wal, Esther S. Grootendorst, Johannes S.M. Hobbelen, Annette A.J. van der Putten, Peter P. De Deyn, Aly Waninge, Alain D. Dekker^*

^*Corresponding author for this work

Research output: Contribution to journal › Article › Academic › peer-review

2 Citations (Scopus)

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Abstract

Introduction: Diagnosing dementia in people with severe/profound intellectual (and multiple) disabilities (SPI(M)D) is complex. Whereas existing dementia screening instruments as a whole are unsuitable for this population, a number of individual items may apply. Therefore, this study aimed to identify applicable items in existing dementia screening instruments.

Methods: Informant interviews about 40 people with SPI(M)D were conducted to identify applicable items in the Dementia Scale for Down Syndrome, Behavioral and Psychological Symptoms of Dementia in Down Syndrome II scale, Dementia Questionnaire for persons with Mental Retardation and Social competence Rating scale for people with Intellectual Disabilities.

Results: Among 193 items, 101 items were found applicable, categorized in 5 domains: behavioral and psychological functioning (60 items), cognitive functioning (25), motor functioning (6), activities of daily living (5) and medical comorbidities (5).

Conclusion: Identifying applicable items for people with SPI(M)D is an essential step in developing a dedicated dementia screening instrument for this population.

Original language	English
Pages (from-to)	322-363
Number of pages	42
Journal	Journal of mental health research in intellectual disabilities
Volume	15
Issue number	4
Early online date	29-Aug-2022
DOIs	https://doi.org/10.1080/19315864.2022.2111737
Publication status	Published - 2022

Keywords

Dementia
Down syndrome
instruments
intellectual disabilities
severe/profound intellectual (and multiple) disabilities

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Dementia in People with Severe/Profound Intellectual (and Multiple) DisabilitiesFinal publisher's version, 1.59 MBLicence: CC BY

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Wissing, M. B. G., Dijkstra, R., van der Wal, I. A., Grootendorst, E. S., Hobbelen, J. S. M., van der Putten, A. A. J., De Deyn, P. P., Waninge, A., & Dekker, A. D. (2022). Dementia in people with severe/profound intellectual (and multiple) disabilities: Applicability of items in dementia screening instruments for people with intellectual disabilities. Journal of mental health research in intellectual disabilities, 15(4), 322-363. https://doi.org/10.1080/19315864.2022.2111737

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title = "Dementia in people with severe/profound intellectual (and multiple) disabilities: Applicability of items in dementia screening instruments for people with intellectual disabilities",

abstract = "Introduction: Diagnosing dementia in people with severe/profound intellectual (and multiple) disabilities (SPI(M)D) is complex. Whereas existing dementia screening instruments as a whole are unsuitable for this population, a number of individual items may apply. Therefore, this study aimed to identify applicable items in existing dementia screening instruments.Methods: Informant interviews about 40 people with SPI(M)D were conducted to identify applicable items in the Dementia Scale for Down Syndrome, Behavioral and Psychological Symptoms of Dementia in Down Syndrome II scale, Dementia Questionnaire for persons with Mental Retardation and Social competence Rating scale for people with Intellectual Disabilities.Results: Among 193 items, 101 items were found applicable, categorized in 5 domains: behavioral and psychological functioning (60 items), cognitive functioning (25), motor functioning (6), activities of daily living (5) and medical comorbidities (5).Conclusion: Identifying applicable items for people with SPI(M)D is an essential step in developing a dedicated dementia screening instrument for this population.",

keywords = "Dementia, Down syndrome, instruments, intellectual disabilities, severe/profound intellectual (and multiple) disabilities",

author = "Wissing, {Maureen B.G.} and Roos Dijkstra and {van der Wal}, {Ina A.} and Grootendorst, {Esther S.} and Hobbelen, {Johannes S.M.} and {van der Putten}, {Annette A.J.} and {De Deyn}, {Peter P.} and Aly Waninge and Dekker, {Alain D.}",

note = "Publisher Copyright: {\textcopyright} 2022 The Author(s). Published with license by Taylor & Francis Group, LLC.",

year = "2022",

doi = "10.1080/19315864.2022.2111737",

language = "English",

volume = "15",

pages = "322--363",

journal = "Journal of mental health research in intellectual disabilities",

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number = "4",

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Wissing, MBG, Dijkstra, R, van der Wal, IA, Grootendorst, ES, Hobbelen, JSM , van der Putten, AAJ , De Deyn, PP , Waninge, A & Dekker, AD 2022, 'Dementia in people with severe/profound intellectual (and multiple) disabilities: Applicability of items in dementia screening instruments for people with intellectual disabilities', Journal of mental health research in intellectual disabilities, vol. 15, no. 4, pp. 322-363. https://doi.org/10.1080/19315864.2022.2111737

Dementia in people with severe/profound intellectual (and multiple) disabilities: Applicability of items in dementia screening instruments for people with intellectual disabilities. / Wissing, Maureen B.G.; Dijkstra, Roos; van der Wal, Ina A. et al.
In: Journal of mental health research in intellectual disabilities, Vol. 15, No. 4, 2022, p. 322-363.

Research output: Contribution to journal › Article › Academic › peer-review

TY - JOUR

T1 - Dementia in people with severe/profound intellectual (and multiple) disabilities: Applicability of items in dementia screening instruments for people with intellectual disabilities

AU - Wissing, Maureen B.G.

AU - Dijkstra, Roos

AU - van der Wal, Ina A.

AU - Grootendorst, Esther S.

AU - Hobbelen, Johannes S.M.

AU - van der Putten, Annette A.J.

AU - De Deyn, Peter P.

AU - Waninge, Aly

AU - Dekker, Alain D.

PY - 2022

Y1 - 2022

N2 - Introduction: Diagnosing dementia in people with severe/profound intellectual (and multiple) disabilities (SPI(M)D) is complex. Whereas existing dementia screening instruments as a whole are unsuitable for this population, a number of individual items may apply. Therefore, this study aimed to identify applicable items in existing dementia screening instruments.Methods: Informant interviews about 40 people with SPI(M)D were conducted to identify applicable items in the Dementia Scale for Down Syndrome, Behavioral and Psychological Symptoms of Dementia in Down Syndrome II scale, Dementia Questionnaire for persons with Mental Retardation and Social competence Rating scale for people with Intellectual Disabilities.Results: Among 193 items, 101 items were found applicable, categorized in 5 domains: behavioral and psychological functioning (60 items), cognitive functioning (25), motor functioning (6), activities of daily living (5) and medical comorbidities (5).Conclusion: Identifying applicable items for people with SPI(M)D is an essential step in developing a dedicated dementia screening instrument for this population.

AB - Introduction: Diagnosing dementia in people with severe/profound intellectual (and multiple) disabilities (SPI(M)D) is complex. Whereas existing dementia screening instruments as a whole are unsuitable for this population, a number of individual items may apply. Therefore, this study aimed to identify applicable items in existing dementia screening instruments.Methods: Informant interviews about 40 people with SPI(M)D were conducted to identify applicable items in the Dementia Scale for Down Syndrome, Behavioral and Psychological Symptoms of Dementia in Down Syndrome II scale, Dementia Questionnaire for persons with Mental Retardation and Social competence Rating scale for people with Intellectual Disabilities.Results: Among 193 items, 101 items were found applicable, categorized in 5 domains: behavioral and psychological functioning (60 items), cognitive functioning (25), motor functioning (6), activities of daily living (5) and medical comorbidities (5).Conclusion: Identifying applicable items for people with SPI(M)D is an essential step in developing a dedicated dementia screening instrument for this population.

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KW - Down syndrome

KW - instruments

KW - intellectual disabilities

KW - severe/profound intellectual (and multiple) disabilities

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DO - 10.1080/19315864.2022.2111737

M3 - Article

AN - SCOPUS:85136997356

SN - 1931-5864

VL - 15

SP - 322

EP - 363

JO - Journal of mental health research in intellectual disabilities

JF - Journal of mental health research in intellectual disabilities

IS - 4

ER -

Wissing MBG, Dijkstra R, van der Wal IA, Grootendorst ES, Hobbelen JSM , van der Putten AAJ et al. Dementia in people with severe/profound intellectual (and multiple) disabilities: Applicability of items in dementia screening instruments for people with intellectual disabilities. Journal of mental health research in intellectual disabilities. 2022;15(4):322-363. Epub 2022 Aug 29. doi: 10.1080/19315864.2022.2111737

Dementia in people with severe/profound intellectual (and multiple) disabilities: Applicability of items in dementia screening instruments for people with intellectual disabilities

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