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

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

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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.

Original language	English
Pages (from-to)	364-393
Number of pages	30
Journal	Journal of Mental Health Research in Intellectual Disabilities
Volume	15
Issue number	4
Early online date	22 Apr 2022
DOIs	https://doi.org/10.1080/19315864.2022.2061092
Publication status	Published - 22 Apr 2022

UN SDGs

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

SDG 03 Good Health and Well-being

Keywords

dementia
down syndrome
intellectual disabilities
severe/profound and multiple 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)

Healthy lifestyle and living environment
Frailty and adequate care

Publinova themes

Other
Health
Recreation, Exercise and Sports
People and Society

Access to Document

10.1080/19315864.2022.2061092Licence: CC BY

Wissing et al. 2022 Dementia SPI(M)D Survey/InterviewsFinal published version, 2.21 MB

Cite this

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, no. 4, pp. 364-393. https://doi.org/10.1080/19315864.2022.2061092

Dementia in People with Severe/Profound Intellectual (and Multiple) Disabilities: practice-Based Observations of Symptoms. / Wissing, Maureen; Fokkens, Andrea; Dijkstra, Roos et al.
In: Journal of Mental Health Research in Intellectual Disabilities, Vol. 15, No. 4, 22.04.2022, p. 364-393.

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

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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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