Practical applications of the NTG-EDSD for screening adults with intellectual disability for dementia: A German-language version feasibility study

ABSTRACT

Background In this study, we evaluated the feasibility of using the German-language version of a recently developed screening tool for dementia for persons with intellectual disability (ID): the National Task Group – Early Detection Screen for Dementia (NTG-EDSD).

Method Some 221 paid carers of ageing persons with ID were asked to use the NTG-EDSD and report back on its utility and on 4 feasibility dimensions, and to provide detailed feedback on aspects deemed critical or missing.

Results All feasibility dimensions were rated good to very good, and 80% of respondents found the NTG-EDSD useful or very useful for the early detection of dementia. This highlights a high acceptability of this instrument by the main target group.

Conclusions The positive feasibility evaluation of the NTG-EDSD indicates the usability and adequacy of this instrument for application of early detection of dementia in persons with ID.

KEYWORDS:

• assessment
• dementia
• feasibility
• intellectual disability
• NTG-EDSD
• screening

Acknowledgements

We thank Sabine Maxian and Valentina Nartschenko, who helped realise this project.

Author note

An earlier iteration of this paper was posted on the website (http://www.aadmd.org/ntg) of the National Task Group on Intellectual Disabilities and Dementia Practices (“the NTG”) for informational purposes in order to gain comment on and shape further work using the NTG-EDSD by NTG members and users of the NTG-EDSD. No other peer-reviewed version of this paper, in any iteration, appears in any other publication.

Funding

Partial support for the preparation of this article was provided by a grant from the U.S. Department of Education, NIDRR grant number H133B130007. The contents of this article do not necessarily represent the policy of the U.S. Department of Education, and should not be assumed as being endorsed by the U.S. Federal Government.

Notes

1. The German-language version is essentially identical to the original English-language version. The only difference is in items that vary due to country-specific social care condition categories. The core behavioural and functional items, as well as the DSQIID, remain identical.

2. Paid carers in this context are staff employed by services agencies to provide care and support to agency clientele with an ID.

3. The NTG-EDSD was originally developed for applications in the United States in response to aims found in two documents, “‘My Thinker's Not Working’: A National Strategy for Enabling Adult with Intellectual Disabilities Affected by Dementia to Remain in Their Community and Receive Quality Supports” (NTG, 2012; Goal #4: “Encourage provider agencies in the United States to implement screenings of their older-age clientele with an intellectual disability who are at-risk of or affected by dementia”) and the “National Plan to Address Alzheimer's Disease” (U.S. Department of Health and Human Services, 2012; Strategy 1.B: Ensure timely and accurate diagnosis, and Action 2.B.2: Identify and disseminate appropriate assessment tools). When issued, its purpose was for it to be used as an administrative screen of adults at risk for dementia and any data collected to be used as part of subsequent assessment or diagnostic event. It was also to be used as the “cognitive assessment” event for adults with ID as part of the mandated annual wellness visit under the Affordable Care Act in the United States. Its use in other countries was dependent on national or local needs and applications, and it was recognised that some items tangential to screening could be omitted or adapted.