Most common refusals of personal care in advanced dementia: Psychometric properties of the Refusal of Care Informant Scale (RoCIS)

Background and Objectives: Refusals of care in dementia can be a source of distress for people with dementia and their caregivers. Informant-based measures to examine refusals of care are limited and often measure other behaviours such as agitation. We aimed to assess the validity and reliability of the newly developed, 14-item, Refusal of Care Informant Scale (RoCIS) and then use the scale to verify the most common refusal behaviours.

Research Design and Methods: Data from 129 dyads were analysed. Dyad was defined as a person with advanced dementia either living in a care home or supported in their own home and their caregiver. Data about the person with dementia were gathered using informant-based questionnaires. The psychometric properties of the RoCIS were investigated using Rasch analysis to determine validity and reliability.

Results: Following Rasch analysis, the item ‘upset’ was removed from the RoCIS. The reduced 13-item RoCIS is unidimensional and achieved a reliability index of 0.85 (Cronbach’s alpha 0.88). 68% of people with dementia had refused care in the last month, with ‘verbally refused’ the most common type of refusal behaviour. People in the ‘very severe/profound’ stage of dementia showed more refusal behaviours than those in the ‘severe’ stage.

Discussion and Implications: Results provide initial evidence that the RoCIS is a valid and reliable informant-based scale measuring refusals of care in advanced dementia. Results indicate a need to develop new approaches and techniques to make assistance with personal care more acceptable to people with dementia.