Informant-based assessment instruments for dementia in people with intellectual disability: A systematic review and standardised evaluation

Novaković, Irina Zrnić; Komenda, Sophie; Franken, Fabian; Sobisch, Marc; Mayer, Anna-Maria; Neumann, Lennart C.; Loosli, Sandra; Hoare, Sarah; Pietschnig, Jakob

doi:10.1016/j.ridd.2021.104148

Cited by 19 publications

(17 citation statements)

References 58 publications

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“… 20 A systematic review was conducted on informant‐based assessment instruments for dementia in people with ID. 21 …”

Section: Methodsmentioning

confidence: 99%

“…A pilot study assessed the barriers to implementing screening for dementia using NTG‐EDSD and follow‐up dementia assessments 20 . A systematic review was conducted on informant‐based assessment instruments for dementia in people with ID 21 …”

Section: Methodsmentioning

confidence: 99%

“… 21 NTG‐EDSD was reported to have superior quality of evidence for content validity. 21 It had high evidence of sufficient relevance and comprehensiveness, and moderate evidence of sufficient comprehensibility. However, internal consistency has not been evaluated for the NTG‐EDSD.…”

Section: Introductionmentioning

confidence: 99%

“…A systematic review analyzed 42 studies evaluating 18 informant‐based dementia assessment instruments and provided evidence‐based recommendations for instruments most suitable in clinical practice and research 21 . NTG‐EDSD was reported to have superior quality of evidence for content validity 21 . It had high evidence of sufficient relevance and comprehensiveness, and moderate evidence of sufficient comprehensibility.…”

Section: Introductionmentioning

confidence: 99%

“…However, internal consistency has not been evaluated for the NTG-EDSD. 21 The NTG-EDSD is a resource for lay-persons and professionals to record cognitive, behavioral, and functional changes known to be associated with dementia. 10 It gathers information on relevant demographics, ratings of health, mental health, and life stressors, surveys of multiple areas related to functioning, and reviews chronic medical conditions.…”

Section: Introductionmentioning

confidence: 99%

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Training professional caregivers to screen for report of cognitive changes in persons with intellectual disability

Walaszek

Albrecht

LeCaire

et al. 2022

A&D Transl Res & Clin Interv

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Introduction By age 60, 60% of adults with Down syndrome (DS) have dementia. Detecting dementia in persons with intellectual disability (ID) can be challenging because their underlying cognitive impairment can confound presentation of dementia symptoms and because adults with ID may have difficulty reporting symptoms. The National Task Group Early Detection Screen for Dementia (NTG‐EDSD) was developed to aid detection of report of cognitive impairment in adults with ID. We implemented an educational curriculum using the NTG‐EDSD and evaluated the impact of the intervention on professional caregivers’ self‐assessed capacity to identify persons with ID and dementia. Methods We held five in‐person training sessions for professional caregivers of persons with ID, partnering with various managed care organizations and social services agencies. We assessed knowledge and attitudes at baseline; immediately after training; and 1 week, 1 month, and 6 months after training. Results A total of 154 direct care workers, case managers, health‐care providers, and other social services staff attended the trainings. Satisfaction with the NTG‐EDSD training was high; 94% of attendees agreed or strongly agreed that they could use the NTG‐EDSD with their clients. After training, attendees reported a marked increase in confidence in their ability to track various health circumstances and detect functional decline in their clients, although some gains were not sustained over time. As a result of the training, one managed care organization made the NTG‐EDSD a standard part of its assessment of adults with DS starting at age 40. Discussion Social services and health‐care professionals can learn to document signs of cognitive decline in adults with ID using the NTG‐EDSD. Attendees were highly satisfied with the training, experienced an increase in confidence in their care of persons with ID, and found the NTG‐ EDSD feasible to use. Because not all gains were sustained over time, booster trainings may be necessary.

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“… 20 A systematic review was conducted on informant‐based assessment instruments for dementia in people with ID. 21 …”

Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Training professional caregivers to screen for report of cognitive changes in persons with intellectual disability

Walaszek

Albrecht

LeCaire

et al. 2022

A&D Transl Res & Clin Interv

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Exploration of a somatosensory interactive assessment tool for children with intellectual disabilities

Lu,

Li,

Zeng

2024

PsyCh Journal

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Based on the functional assessment concept and embodied assessment requirements, the present study aimed to design and develop an assessment tool for children with intellectual disabilities with the help of somatosensory interactive (SI) technology. The sample in this study consisted of 73 children with intellectual disabilities and 70 children with typical development. Data were collected through three SI tasks, four traditional executive function tasks, and user experience interviews to analyse the effectiveness of the SI assessment tool. The results showed that the SI assessment tool had good scale validity, discriminant validity, and the ability to identify intellectual disabilities. Children preferred SI tasks and showed higher involvement and more positive emotions. The SI tool with three SI tasks is a more scientific, effective, and advanced tool for assessing children with intellectual disabilities.

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Enhancing research practice in developmental disabilities

Balboni

Widaman

Esposito

2023

Research in Developmental Disabilities

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Informant-based assessment instruments for dementia in people with intellectual disability: A systematic review and standardised evaluation

Cited by 19 publications

References 58 publications

Training professional caregivers to screen for report of cognitive changes in persons with intellectual disability

Training professional caregivers to screen for report of cognitive changes in persons with intellectual disability

Exploration of a somatosensory interactive assessment tool for children with intellectual disabilities

Enhancing research practice in developmental disabilities

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