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

University of Groningen
University of Groningen, University Medical Center Groningen, Alzheimer Research Center
University of Groningen, University Medical Center Groningen
The Northern Netherlands Alliance SNN
Department of Practice-Oriented Scientific Research (PWO)
Alliade Care Group
Advisium
Ipse de Bruggen
Department of Psychology, Health and Technology, University of Twente, Enschede
Royal Dutch Visio Noord Nederland
Schilders De Vries

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

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

SDG 03 Good Health and Well-being

Keywords

dementia
down syndrome
focus groups
intellectual disabilities

Research Focus Areas Hanze University of Applied Sciences * (mandatory by Hanze)

Healthy Ageing

Research Focus Areas Research Centre or Centre of Expertise * (mandatory by Hanze)

Frailty and adequate care

Publinova themes

Other
Health

Access to Document

10.1111/jar.12912Licence: CC BY

Cite this

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

Abstract

UN SDGs

Keywords

Research Focus Areas Hanze University of Applied Sciences * (mandatory by Hanze)

Research Focus Areas Research Centre or Centre of Expertise * (mandatory by Hanze)

Publinova themes

Access to Document

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