Validating a New Dementia Assessment for Intellectual Disabilities
Research type
Research Study
Full title
The Development and Validation of a New Battery for Dementia Assessment in the Intellectual Disability Population
IRAS ID
324094
Contact name
Jade Dunning
Contact email
Sponsor organisation
University of Southampton
Duration of Study in the UK
1 years, 2 months, 31 days
Research summary
It is well documented that people with an Intellectual Disability (ID), and those with Down Syndrome (DS), are at higher risk of developing dementia than the general population (Startin et al., 2018). Additionally, research suggests an age-related trend such that those with DS develop dementia much earlier than those with ID and the general population (British Psychological Society [BPS], 2015). Subsequently, it is important that individuals with ID and/or DS can access appropriate services to assess and diagnose dementia, through the utility of well validated tests (Edgin et al., 2010).
The BPS (2009) and National Institute for Health and Care Excellence (2016, 2018) have published guidance for the assessment, diagnosis and care planning for people with ID and suspected dementia. Several assessment tools are suggested however, due to limited research, specific recommendations are lacking. Of the existing assessment tools, only a small minority were specifically designed and validated for use with ID (McKenzie et al. 2018), or the psychometric data is not available. The challenge remains that there is significant variability in individuals' cognitive abilities within the ID range (Margallo-Lana et al., 2018) and so instruments validated within the general population should not automatically be used for the LD population, as the same norms do not apply.
Currently, approaches to assessing dementia in ID in the UK are not standardised therefore it is the aim of this project to develop and validate a new assessment battery, exploring the use of individual ‘cut-off’ scores based on reliable change, and provide standardised administration guidance to support accurate and timely diagnosis.
Participants will be recruited from community ID services across a number of NHS Trusts. This study will involve standardised administration of the new battery to enable comparisons to baseline dementia assessments completed as part of routine care. Data will be analyzed quantitatively.
REC name
South Central - Hampshire A Research Ethics Committee
REC reference
23/SC/0229
Date of REC Opinion
18 Aug 2023
REC opinion
Further Information Favourable Opinion