This research aimed to identify current national provision by health services in Scotland in relation to proactive screening and reactive assessment for people with an intellectual disability in Scotland who have, or are at risk of developing, dementia. Staff from 12 intellectual disability services, representing the 11 health board areas in Scotland, completed an online questionnaire which asked about proactive screening and reactive assessment for people with intellectual disability who had, or were at risk of developing, dementia as well as suggested areas for improvement. All of the areas provided services for people with intellectual disability who have, or are at risk of developing, dementia, but differed as to whether this was reactive, proactive or both. Nine services offered intervention following diagnosis. The most common elements used across both proactive screening and reactive assessment were conducting a health check, using a general dementia questionnaire designed for people with an intellectual disability and direct assessment with the person. Clinical psychology and community learning disability nurses were the professions most likely to be involved routinely in both proactive screening and reactive assessments. The psychometric properties of the most commonly used assessments of cognitive and behavioural functioning were mixed. The areas of improvement suggested by practitioners mainly related to ways of improving existing pathways. This research represents the first step in providing an overview of service provision in Scotland. There was some inconsistency in relation to the general and specific components which were involved in proactive screening and reactive assessment. Implications for service provision are discussed.
People with an intellectual disability in the discourse of chronic and complex conditions: an invisible group?