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

Maureen B G Wissing; Andrea S Fokkens; Roos Dijkstra; Johannes S M Hobbelen; Annette A J van der Putten; Peter P 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

J Ment Health Res Intellect Disabil. 2022 Apr 22;15(4):364-393. doi: 10.1080/19315864.2022.2061092. eCollection 2022.

Authors

Maureen B G Wissing^{1

2

3

4}, Andrea S Fokkens^{3

5}, Roos Dijkstra^{4

6}, Johannes S M Hobbelen^{2

7}, Annette A J van der Putten^{4

8}, Peter P De Deyn^{1

9

10}, Aly Waninge^{2

4

11

12}, Alain D Dekker^{1

3}

Affiliations

¹ Department of Neurology and Alzheimer Center, University of Groningen, University Medical Center Groningen, Groningen, The Netherlands.
² Research Group Healthy Ageing, Allied Health Care and Nursing, Hanze University of Applied Sciences, Groningen, The Netherlands.
³ Department of Practice-Oriented Scientific Research (PWO), Alliade Care Group, Heerenveen, The Netherlands.
⁴ Academic Collaborative Center for PIMD, Groningen, The Netherlands.
⁵ Department of Health Sciences, Applied Health Research, University of Groningen, University Medical Center Groningen, Groningen, The Netherlands.
⁶ 's Heeren Loo Advisium, Amersfoort, The Netherlands.
⁷ Department of General Practice & Elderly Care Medicine, University of Groningen, University Medical Center Groningen, Groningen, The Netherlands.
⁸ Department of Inclusive and Special Needs Education, Faculty of Behavioural and Social Sciences, University of Groningen, Groningen, The Netherlands.
⁹ Laboratory of Neurochemistry and Behaviour, University of Antwerp, Wilrijk, Antwerp, Belgium.
¹⁰ Department of Neurology and Memory Clinic, Hospital Network Antwerp (ZNA) Middelheim and Hoge Beuken, Antwerp, Belgium.
¹¹ Department of Health Psychology, University of Groningen, University Medical Center Groningen, Groningen, The Netherlands.
¹² Royal Dutch Visio, Vries, The Netherlands.

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.

Keywords: Down syndrome; dementia; intellectual disabilities; severe/profound intellectual (and multiple) disabilities.