Dementia in people with severe or profound intellectual (and multiple) disabilities: Focus group research into relevance, symptoms and training needs

Alain D Dekker; Maureen B G Wissing; Aurora M Ulgiati; Bas Bijl; Gaby van Gool; Marieke R Groen; Esther S Grootendorst; Ina A van der Wal; Johannes S M Hobbelen; Peter P De Deyn; Aly Waninge

doi:10.1111/jar.12912

Dementia in people with severe or profound intellectual (and multiple) disabilities: Focus group research into relevance, symptoms and training needs

Alain D Dekker, Maureen B G Wissing, Aurora M Ulgiati, Bas Bijl, Gaby van Gool, Marieke R Groen, Esther S Grootendorst, Ina A van der Wal, Johannes S M Hobbelen, Peter P De Deyn, Aly Waninge

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

Abstract

BACKGROUND: Differentiating dementia from baseline level of functioning is difficult among people with severe/profound intellectual (and multiple) disabilities. Moreover, studies on observable dementia symptoms are scarce. This study examined (a) the relevance of dementia diagnosis, (b) observable symptoms and (c) training/information needs.

METHODS: Four explorative focus groups were held with care professionals and family members who have experience with people with severe/profound intellectual (and multiple) disabilities (≥40 years) and decline/dementia.

RESULTS: Thematic analysis showed that participants wanted to know about a dementia diagnosis for a better understanding and to be able to make informed choices (question 1). Using a categorisation matrix, cognitive and behavioural changes were shown to be most prominent (question 2). Participants indicated that they needed enhanced training, more knowledge development and translation, and supportive organisational choices/policies (question 3).

CONCLUSIONS: Timely identifying/diagnosing dementia allows for a timely response to changing needs. This requires a better understanding of symptoms.

Original language	English
Pages (from-to)	1602-1617
Number of pages	16
Journal	Journal of Applied Research in Intellectual Disabilities
Volume	34
Issue number	6
Early online date	2 Jul 2021
DOIs	https://doi.org/10.1111/jar.12912
Publication status	Published - Nov 2021

Keywords

dementia
down syndrome
focus groups
intellectual disabilities

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10.1111/jar.12912Licence: CC BY

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Dekker, A. D., Wissing, M. B. G., Ulgiati, A. M., Bijl, B., van Gool, G., Groen, M. R., Grootendorst, E. S., van der Wal, I. A., Hobbelen, J. S. M., De Deyn, P. P., & Waninge, A. (2021). Dementia in people with severe or profound intellectual (and multiple) disabilities: Focus group research into relevance, symptoms and training needs. Journal of Applied Research in Intellectual Disabilities, 34(6), 1602-1617. https://doi.org/10.1111/jar.12912

@article{571975c87d724eabb9dda52e9d07ca28,

title = "Dementia in people with severe or profound intellectual (and multiple) disabilities: Focus group research into relevance, symptoms and training needs",

abstract = "BACKGROUND: Differentiating dementia from baseline level of functioning is difficult among people with severe/profound intellectual (and multiple) disabilities. Moreover, studies on observable dementia symptoms are scarce. This study examined (a) the relevance of dementia diagnosis, (b) observable symptoms and (c) training/information needs.METHODS: Four explorative focus groups were held with care professionals and family members who have experience with people with severe/profound intellectual (and multiple) disabilities (≥40 years) and decline/dementia.RESULTS: Thematic analysis showed that participants wanted to know about a dementia diagnosis for a better understanding and to be able to make informed choices (question 1). Using a categorisation matrix, cognitive and behavioural changes were shown to be most prominent (question 2). Participants indicated that they needed enhanced training, more knowledge development and translation, and supportive organisational choices/policies (question 3).CONCLUSIONS: Timely identifying/diagnosing dementia allows for a timely response to changing needs. This requires a better understanding of symptoms.",

keywords = "dementia, down syndrome, focus groups, intellectual disabilities, dementie, syndroom van down, focusgroepen, verstandelijke beperkingen",

author = "Dekker, {Alain D} and Wissing, {Maureen B G} and Ulgiati, {Aurora M} and Bas Bijl and {van Gool}, Gaby and Groen, {Marieke R} and Grootendorst, {Esther S} and {van der Wal}, {Ina A} and Hobbelen, {Johannes S M} and {De Deyn}, {Peter P} and Aly Waninge",

note = "{\textcopyright} 2021 The Authors. Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.",

year = "2021",

month = nov,

doi = "10.1111/jar.12912",

language = "English",

volume = "34",

pages = "1602--1617",

journal = "Journal of Applied Research in Intellectual Disabilities",

issn = "1360-2322",

publisher = "Wiley-Blackwell",

number = "6",

}

Dekker, AD, Wissing, MBG, Ulgiati, AM, Bijl, B, van Gool, G, Groen, MR, Grootendorst, ES, van der Wal, IA, Hobbelen, JSM, De Deyn, PP & Waninge, A 2021, 'Dementia in people with severe or profound intellectual (and multiple) disabilities: Focus group research into relevance, symptoms and training needs', Journal of Applied Research in Intellectual Disabilities, vol. 34, no. 6, pp. 1602-1617. https://doi.org/10.1111/jar.12912

Dementia in people with severe or profound intellectual (and multiple) disabilities: Focus group research into relevance, symptoms and training needs. / Dekker, Alain D; Wissing, Maureen B G; Ulgiati, Aurora M et al.
In: Journal of Applied Research in Intellectual Disabilities, Vol. 34, No. 6, 11.2021, p. 1602-1617.

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

TY - JOUR

T1 - Dementia in people with severe or profound intellectual (and multiple) disabilities

T2 - Focus group research into relevance, symptoms and training needs

AU - Dekker, Alain D

AU - Wissing, Maureen B G

AU - Ulgiati, Aurora M

AU - Bijl, Bas

AU - van Gool, Gaby

AU - Groen, Marieke R

AU - Grootendorst, Esther S

AU - van der Wal, Ina A

AU - Hobbelen, Johannes S M

AU - De Deyn, Peter P

AU - Waninge, Aly

PY - 2021/11

Y1 - 2021/11

N2 - BACKGROUND: Differentiating dementia from baseline level of functioning is difficult among people with severe/profound intellectual (and multiple) disabilities. Moreover, studies on observable dementia symptoms are scarce. This study examined (a) the relevance of dementia diagnosis, (b) observable symptoms and (c) training/information needs.METHODS: Four explorative focus groups were held with care professionals and family members who have experience with people with severe/profound intellectual (and multiple) disabilities (≥40 years) and decline/dementia.RESULTS: Thematic analysis showed that participants wanted to know about a dementia diagnosis for a better understanding and to be able to make informed choices (question 1). Using a categorisation matrix, cognitive and behavioural changes were shown to be most prominent (question 2). Participants indicated that they needed enhanced training, more knowledge development and translation, and supportive organisational choices/policies (question 3).CONCLUSIONS: Timely identifying/diagnosing dementia allows for a timely response to changing needs. This requires a better understanding of symptoms.

AB - BACKGROUND: Differentiating dementia from baseline level of functioning is difficult among people with severe/profound intellectual (and multiple) disabilities. Moreover, studies on observable dementia symptoms are scarce. This study examined (a) the relevance of dementia diagnosis, (b) observable symptoms and (c) training/information needs.METHODS: Four explorative focus groups were held with care professionals and family members who have experience with people with severe/profound intellectual (and multiple) disabilities (≥40 years) and decline/dementia.RESULTS: Thematic analysis showed that participants wanted to know about a dementia diagnosis for a better understanding and to be able to make informed choices (question 1). Using a categorisation matrix, cognitive and behavioural changes were shown to be most prominent (question 2). Participants indicated that they needed enhanced training, more knowledge development and translation, and supportive organisational choices/policies (question 3).CONCLUSIONS: Timely identifying/diagnosing dementia allows for a timely response to changing needs. This requires a better understanding of symptoms.

KW - dementia

KW - down syndrome

KW - focus groups

KW - intellectual disabilities

KW - dementie

KW - syndroom van down

KW - focusgroepen

KW - verstandelijke beperkingen

UR - https://www.mendeley.com/catalogue/8d13a2fe-daa9-3b2a-a38c-cd510f48c9ed/

U2 - 10.1111/jar.12912

DO - 10.1111/jar.12912

M3 - Article

C2 - 34212466

SN - 1360-2322

VL - 34

SP - 1602

EP - 1617

JO - Journal of Applied Research in Intellectual Disabilities

JF - Journal of Applied Research in Intellectual Disabilities

IS - 6

ER -

Dementia in people with severe or profound intellectual (and multiple) disabilities: Focus group research into relevance, symptoms and training needs

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