REAGERA-dementia: study protocol for the validation of screening instruments to detect abuse of people with dementia

Abuse of older people is common and people living with dementia are at high risk of being subjected to abuse. This study protocol describes the development and procedure to test the validity of two new screening instruments to detect abuse of people with dementia: 1) The REAGERA-S20, intended to be answered by people with dementia themselves, including questions about their abusive experiences, and 2) The REAGERA - N, intended to be answered by the next of kin of people with dementia, including questions about their own exposure to abuse, their own perpetration as well as the witnessing of abusive acts. In addition, the Risk on Elder Abuse and Mistreatment Instrument (REAMI) is translated into Swedish within the project and will be validated. Finally, qualitative interviews are conducted to explore the experiences of abuse from the perspective of both the person with dementia and the next of kin.

People with mild to moderate dementia (n = 80) and their next of kin (n = 80) are recruited at health and social care facilities providing care to people with dementia. In cases of severe dementia, only next of kin is included. At the time of data collection, participants fill out the instruments and are thereafter interviewed, first separately and then jointly by researchers about their abusive experiences. The interviews are used as a gold standard for calculating the properties of the instruments, e.g., sensitivity and specificity, but will also be used for qualitative analysis concerning the experiences of abuse. Health and social care professionals that are well acquainted with the participants fill out the REAMI and results will be validated using the results of the interviews as the gold standard.

This study protocol describes a research project that aims towards a comprehensive identification and understanding of abuse of people with dementia by including the perspective of both people with dementia themselves, their next of kin and professionals. If the instruments are found to be reliable they can be used to detect abuse in people with dementia. Also, the qualitative interviews with participants will enhance our understanding of abuse of people with dementia.

ClinicalTrials.gov Identifier: NCT06659822. Retrospectively registered on October 25 2024.