Dementia in People with Severe/Profound Intellectual (and Multiple) Disabilities: Applicability of Items in Dementia Screening Instruments for People with Intellectual Disabilities

ABSTRACT

Introduction

Diagnosing dementia in people with severe/profound intellectual (and multiple) disabilities (SPI(M)D) is complex. Whereas existing dementia screening instruments as a whole are unsuitable for this population, a number of individual items may apply. Therefore, this study aimed to identify applicable items in existing dementia screening instruments.

Methods

Informant interviews about 40 people with SPI(M)D were conducted to identify applicable items in the Dementia Scale for Down Syndrome, Behavioral and Psychological Symptoms of Dementia in Down Syndrome II scale, Dementia Questionnaire for persons with Mental Retardation and Social competence Rating scale for people with Intellectual Disabilities.

Results

Among 193 items, 101 items were found applicable, categorized in 5 domains: behavioral and psychological functioning (60 items), cognitive functioning (25), motor functioning (6), activities of daily living (5) and medical comorbidities (5).

Conclusion

Identifying applicable items for people with SPI(M)D is an essential step in developing a dedicated dementia screening instrument for this population.

KEYWORDS:

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

Acknowledgments

The authors wish to thank all caregivers and family members of persons with SPI(M)D for participating as informants in the interviews. Moreover, we would like to give special thanks to all staff members who contributed to the project (per care institution): Roelie Fopma, Nienke Stap, Karen van Huizen, Aurora Ulgiati (Alliade), Liesbeth van Dam, Mireille Meeuwsen, Sjoerd Bos (‘s Heeren Loo), José Nicolaas, Mieke Schippers, Lyanne Hassefras, Kimberly Hard, Stefan van Dijk (Ipse de Bruggen), Joke ter Maat, Anne Beenakkers and Marja Brouwer (Royal Dutch Visio). This project is a collaborative effort of Alliade, ‘s Heeren Loo, Ipse de Bruggen, 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).

Additional information

Funding

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).