Dementia in People with Severe/Profound Intellectual (and Multiple) Disabilities:: practice-Based Observations of Symptoms

Maureen Wissing; Andrea Fokkens; Roos Dijkstra; Johannes Hobbelen; A. A. J. van der Putten; Peter Paul De Deyn; Aly Waninge; Alain D. Dekker

doi:10.1080/19315864.2022.2061092

Dementia in People with Severe/Profound Intellectual (and Multiple) Disabilities: practice-Based Observations of Symptoms

Maureen Wissing, Andrea Fokkens, Roos Dijkstra, Johannes Hobbelen, A. A. J. van der Putten, Peter Paul De Deyn, Aly Waninge, Alain D. Dekker

Onderzoeksoutput: Article › Academic › peer review

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Samenvatting

Introduction
Observable dementia symptoms are hardly studied in people with severe/profound intellectual (and multiple) disabilities (SPI(M)D). Insight in symptomatology is needed for timely signaling/diagnosis. This study aimed to identify practice-based observations of dementia symptoms in this population.

Methods
Care professionals and family members were invited to complete a survey about symptoms. Quantitatively analyzed survey data were further deepened through semi-structured interviews with care professionals having vast experience in signaling/diagnosing dementia in this population. Symptoms were categorized using a symptom matrix.

Results
Survey respondents and interviewees frequently observed a decline in activities of daily living (ADL) functioning and behavioral and psychological changes, like increased irritability, anxiety, apathy and decreased eating/drinking behavior. Cognitive symptoms were particularly recognized in persons with verbal communication and/or walking skills. To lesser extent motor changes and medical comorbidities were reported.

Conclusion
Increased insight in dementia symptoms contributes to developing a dedicated screening instrument for dementia in people with SPI(M)D.

Originele taal-2	English
Pagina's (van-tot)	364-393
Aantal pagina's	30
Tijdschrift	Journal of Mental Health Research in Intellectual Disabilities
Volume	15
Nummer van het tijdschrift	4
Vroegere onlinedatum	22 apr. 2022
DOI's	https://doi.org/10.1080/19315864.2022.2061092
Status	Published - 22 apr. 2022

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SDG 03 – Goede gezondheid en welzijn

Keywords

dementie
ernstige meervoudige beperkingen
syndroom van down
verstandelijke beperkingen

Research Focus Areas Hanze University of Applied Sciences

Healthy Ageing

Research Focus Areas Research Centre or Centre of Expertise

Gezonde leefstijl en leefomgeving
Kwetsbaarheid en passende zorg

Publinova thema's

Overig
Gezondheid
Recreatie, Beweging & Sport
Mens en Maatschappij

Toegang tot document

10.1080/19315864.2022.2061092Licentie: CC BY

Wissing et al. 2022 Dementia SPI(M)D Survey/InterviewsFinal published version, 2,21 MB

Citeer dit

Wissing, M., Fokkens, A., Dijkstra, R., Hobbelen, J., 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: practice-Based Observations of Symptoms. Journal of Mental Health Research in Intellectual Disabilities, 15(4), 364-393. https://doi.org/10.1080/19315864.2022.2061092

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abstract = "Introduction Observable dementia symptoms are hardly studied in people with severe/profound intellectual (and multiple) disabilities (SPI(M)D). Insight in symptomatology is needed for timely signaling/diagnosis. This study aimed to identify practice-based observations of dementia symptoms in this population. Methods Care professionals and family members were invited to complete a survey about symptoms. Quantitatively analyzed survey data were further deepened through semi-structured interviews with care professionals having vast experience in signaling/diagnosing dementia in this population. Symptoms were categorized using a symptom matrix. Results Survey respondents and interviewees frequently observed a decline in activities of daily living (ADL) functioning and behavioral and psychological changes, like increased irritability, anxiety, apathy and decreased eating/drinking behavior. Cognitive symptoms were particularly recognized in persons with verbal communication and/or walking skills. To lesser extent motor changes and medical comorbidities were reported. Conclusion Increased insight in dementia symptoms contributes to developing a dedicated screening instrument for dementia in people with SPI(M)D.",

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Wissing, M, Fokkens, A, Dijkstra, R, Hobbelen, J, van der Putten, AAJ, De Deyn, PP, Waninge, A & Dekker, AD 2022, 'Dementia in People with Severe/Profound Intellectual (and Multiple) Disabilities: practice-Based Observations of Symptoms', Journal of Mental Health Research in Intellectual Disabilities, vol. 15, nr. 4, blz. 364-393. https://doi.org/10.1080/19315864.2022.2061092

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T1 - Dementia in People with Severe/Profound Intellectual (and Multiple) Disabilities:

T2 - practice-Based Observations of Symptoms

AU - Wissing, Maureen

AU - Fokkens, Andrea

AU - Dijkstra, Roos

AU - Hobbelen, Johannes

AU - van der Putten, A. A. J.

AU - De Deyn, Peter Paul

AU - Waninge, Aly

AU - Dekker, Alain D.

PY - 2022/4/22

Y1 - 2022/4/22

N2 - Introduction Observable dementia symptoms are hardly studied in people with severe/profound intellectual (and multiple) disabilities (SPI(M)D). Insight in symptomatology is needed for timely signaling/diagnosis. This study aimed to identify practice-based observations of dementia symptoms in this population. Methods Care professionals and family members were invited to complete a survey about symptoms. Quantitatively analyzed survey data were further deepened through semi-structured interviews with care professionals having vast experience in signaling/diagnosing dementia in this population. Symptoms were categorized using a symptom matrix. Results Survey respondents and interviewees frequently observed a decline in activities of daily living (ADL) functioning and behavioral and psychological changes, like increased irritability, anxiety, apathy and decreased eating/drinking behavior. Cognitive symptoms were particularly recognized in persons with verbal communication and/or walking skills. To lesser extent motor changes and medical comorbidities were reported. Conclusion Increased insight in dementia symptoms contributes to developing a dedicated screening instrument for dementia in people with SPI(M)D.

AB - Introduction Observable dementia symptoms are hardly studied in people with severe/profound intellectual (and multiple) disabilities (SPI(M)D). Insight in symptomatology is needed for timely signaling/diagnosis. This study aimed to identify practice-based observations of dementia symptoms in this population. Methods Care professionals and family members were invited to complete a survey about symptoms. Quantitatively analyzed survey data were further deepened through semi-structured interviews with care professionals having vast experience in signaling/diagnosing dementia in this population. Symptoms were categorized using a symptom matrix. Results Survey respondents and interviewees frequently observed a decline in activities of daily living (ADL) functioning and behavioral and psychological changes, like increased irritability, anxiety, apathy and decreased eating/drinking behavior. Cognitive symptoms were particularly recognized in persons with verbal communication and/or walking skills. To lesser extent motor changes and medical comorbidities were reported. Conclusion Increased insight in dementia symptoms contributes to developing a dedicated screening instrument for dementia in people with SPI(M)D.

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