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

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	Mental Handicap Research
Volume	35
Issue number	1
Early online date	4 Jul 2021
DOIs	https://doi.org/10.1111/jar.12920
Publication status	Published - Jan 2022

Keywords

dementia
down syndrome
ageing

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10.1111/jar.12920Licence: CC BY

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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 = "Mental Handicap Research",

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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

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JO - Mental Handicap Research

JF - Mental Handicap Research

IS - 1

ER -

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

Abstract

Keywords

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