The neglected puzzle of dementia in people with severe/profound intellectual disabilities: A systematic literature review of observable symptoms

Maureen B G Wissing; Aurora M Ulgiati; Johannes S M Hobbelen; Peter P De Deyn; Aly Waninge; Alain D Dekker

doi:10.1111/jar.12920

The neglected puzzle of dementia in people with severe/profound intellectual disabilities: A systematic literature review of observable symptoms

Maureen B G Wissing
, Aurora M Ulgiati
, Johannes S M Hobbelen
, Peter P De Deyn
, Aly Waninge
, Alain D Dekker

University of Groningen, University Medical Center Groningen, Alzheimer Research Center
University of Groningen, University Medical Center Groningen
The Northern Netherlands Alliance SNN
Department of Psychology, Health and Technology, University of Twente, Enschede
Royal Dutch Visio Noord Nederland
Schilders De Vries
University of Groningen

Research output: Contribution to journal › Review article › peer-review

Abstract

BACKGROUND: Dementia is increasingly prevalent in people with severe/profound intellectual disabilities. However, early detection and diagnosis of dementia is complex in this population. This study aimed to identify observable dementia symptoms in adults with severe/profound intellectual disabilities in available literature.

METHOD: A systematic literature search was conducted in PubMed, PsycINFO and Web of Science with an exhaustive search string using a combination of search terms for severe/profound intellectual disabilities and dementia/ageing.

RESULTS: Eleven studies met inclusion criteria. Cognitive decline, behavioural and psychological alterations, decline in activities of daily living as well as neurological and physical changes were found.

CONCLUSIONS: Only a very limited number of studies reported symptoms ascribed to dementia in adults with severe/profound intellectual disabilities. Given the complexity of signalling and diagnosing dementia, dedicated studies are required to unravel the natural history of dementia in this population.

Original language	English
Pages (from-to)	24-45
Number of pages	22
Journal	Journal of Applied Research in Intellectual Disabilities
Volume	35
Issue number	1
Early online date	4 Jul 2021
DOIs	https://doi.org/10.1111/jar.12920
Publication status	Published - Jan 2022

UN SDGs

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

SDG 03 Good Health and Well-being
SDG 17 Partnerships for the Goals

Keywords

dementia
down syndrome
ageing

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.12920Licence: CC BY

Cite this

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title = "The neglected puzzle of dementia in people with severe/profound intellectual disabilities: A systematic literature review of observable symptoms",

abstract = "BACKGROUND: Dementia is increasingly prevalent in people with severe/profound intellectual disabilities. However, early detection and diagnosis of dementia is complex in this population. This study aimed to identify observable dementia symptoms in adults with severe/profound intellectual disabilities in available literature.METHOD: A systematic literature search was conducted in PubMed, PsycINFO and Web of Science with an exhaustive search string using a combination of search terms for severe/profound intellectual disabilities and dementia/ageing.RESULTS: Eleven studies met inclusion criteria. Cognitive decline, behavioural and psychological alterations, decline in activities of daily living as well as neurological and physical changes were found.CONCLUSIONS: Only a very limited number of studies reported symptoms ascribed to dementia in adults with severe/profound intellectual disabilities. Given the complexity of signalling and diagnosing dementia, dedicated studies are required to unravel the natural history of dementia in this population.",

keywords = "dementia, down syndrome, ageing, dementie, syndroom van down, ouder worden",

author = "Wissing, \{Maureen B G\} and Ulgiati, \{Aurora M\} and Hobbelen, \{Johannes S M\} and \{De Deyn\}, \{Peter P\} and Aly Waninge and Dekker, \{Alain D\}",

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year = "2022",

month = jan,

doi = "10.1111/jar.12920",

language = "English",

volume = "35",

pages = "24--45",

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

issn = "1360-2322",

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}

The neglected puzzle of dementia in people with severe/profound intellectual disabilities: A systematic literature review of observable symptoms. / Wissing, Maureen B G; Ulgiati, Aurora M; Hobbelen, Johannes S M et al.
In: Journal of Applied Research in Intellectual Disabilities, Vol. 35, No. 1, 01.2022, p. 24-45.

Research output: Contribution to journal › Review article › peer-review

TY - JOUR

T1 - The neglected puzzle of dementia in people with severe/profound intellectual disabilities

T2 - A systematic literature review of observable symptoms

AU - Wissing, Maureen B G

AU - Ulgiati, Aurora M

AU - Hobbelen, Johannes S M

AU - De Deyn, Peter P

AU - Waninge, Aly

AU - Dekker, Alain D

PY - 2022/1

Y1 - 2022/1

N2 - BACKGROUND: Dementia is increasingly prevalent in people with severe/profound intellectual disabilities. However, early detection and diagnosis of dementia is complex in this population. This study aimed to identify observable dementia symptoms in adults with severe/profound intellectual disabilities in available literature.METHOD: A systematic literature search was conducted in PubMed, PsycINFO and Web of Science with an exhaustive search string using a combination of search terms for severe/profound intellectual disabilities and dementia/ageing.RESULTS: Eleven studies met inclusion criteria. Cognitive decline, behavioural and psychological alterations, decline in activities of daily living as well as neurological and physical changes were found.CONCLUSIONS: Only a very limited number of studies reported symptoms ascribed to dementia in adults with severe/profound intellectual disabilities. Given the complexity of signalling and diagnosing dementia, dedicated studies are required to unravel the natural history of dementia in this population.

AB - BACKGROUND: Dementia is increasingly prevalent in people with severe/profound intellectual disabilities. However, early detection and diagnosis of dementia is complex in this population. This study aimed to identify observable dementia symptoms in adults with severe/profound intellectual disabilities in available literature.METHOD: A systematic literature search was conducted in PubMed, PsycINFO and Web of Science with an exhaustive search string using a combination of search terms for severe/profound intellectual disabilities and dementia/ageing.RESULTS: Eleven studies met inclusion criteria. Cognitive decline, behavioural and psychological alterations, decline in activities of daily living as well as neurological and physical changes were found.CONCLUSIONS: Only a very limited number of studies reported symptoms ascribed to dementia in adults with severe/profound intellectual disabilities. Given the complexity of signalling and diagnosing dementia, dedicated studies are required to unravel the natural history of dementia in this population.

KW - dementia

KW - down syndrome

KW - ageing

KW - dementie

KW - syndroom van down

KW - ouder worden

U2 - 10.1111/jar.12920

DO - 10.1111/jar.12920

M3 - Review article

C2 - 34219327

SN - 1360-2322

VL - 35

SP - 24

EP - 45

JO - Journal of Applied Research in Intellectual Disabilities

JF - Journal of Applied Research in Intellectual Disabilities

IS - 1

ER -

The neglected puzzle of dementia in people with severe/profound intellectual disabilities: A systematic literature review of observable symptoms

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

Fingerprint

Cite this