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

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:

• dementia
• intellectual disabilities
• severe/profound intellectual (and multiple) disabilities
• Down syndrome

Acknowledgments

The authors would like to thank all care professionals and family members for participating and sharing their practice-based knowledge, as well as the persons who provided feedback on the pilot version of the survey. Moreover, we wish to thank the project team members Ina van der Wal (Alliade Care Group), Esther Grootendorst (Ipse de Bruggen) and Marieke Groen (‘s Heeren Loo) for identifying eligible survey respondents and interview participants and for distributing the survey. This study was part of the research project ‘Practice-based questions about dementia in people with SPI(M)D,’ funded by the ZonMw Dementia Research and Innovation Programme ‘Memorabel’ (no. 733050863). This project is a collaborative effort of Ipse de Bruggen, ‘s Heeren Loo, Alliade Care Group, Royal Dutch Visio, Hanze University of Applied Sciences, University of Groningen and UMCG.

Disclosure statement

No potential conflict of interest was reported by the author(s).