Responding to Elder Abuse in GERiAtric Care - Dementia

Abuse of older people is common and people with dementia are especially susceptible to abuse. Older people may be subjected to physical, psychological, sexual, financial abuse or neglect by relatives as well as health and social care professionals or other people in a relationship involving an expectation of trust. Reporting experiences of abuse is associated with poor health outcomes. Still, abusive experiences are often unknown to professionals.

This study protocol describes the development and procedure to test the validity of two new screening instruments (REAGERA-S20 and REAGERA-N) to detect abuse of people with dementia. The aims of the study are:

1. To assess the validity of two new self-administered screening tools to detect abusive experiences among people with dementia: the REAGERA-S20 directed at people with dementia and the REAGERA-N directed at the next of kin.
2. To translate and validate a Swedish version of the Risk of Elder Abuse and Mistreatment Instrument (REAMI) that can be used by professional caregivers to estimate risk of maltreatment and abuse of people with dementia.
3. To explore experiences of abuse among people with dementia and their next of kin.

Method 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 or when the person with dementia is excluded for other reasons, only next of kin is included.

The following steps are used in the data collection

1. Participants fill out the REAGERA-S20 or REAGERA-N individually.
2. Participants are interviewed individually by two different researchers about their abusive experiences. If a participant talks about abusive experiences, a qualitative in-depth interview about those experiences is conducted.
3. A preliminary classification of the participants as abused or not abused, based only on information provided in the individual interview is made.
4. Information provided in the two individual interviews are compared by the researchers. If needed, and with permission obtained individually from the participants, a joint concluding interview is conducted to clarify inconsistencies.
5. A final classification of participants experiences of abuse is made based on the information provided in both interviews.

The validity of the REAGERA-S20/REAGERA-N will be calculated using the following classification of participants made in the interviews as gold standard (aim 1):

For the person with dementia

* Reporting or not reporting abusive experiences during the past 12 months.
* Reporting or not reporting abusive experience earlier in life, i.e. more than 12 months ago.

For the next of kin

* Reporting or not reporting own exposure to abuse by the person with dementia during the past 12 months.
* Reporting or not reporting own perpetration of abuse towards the person with dementia during the past 12 months.
* Reporting or not reporting that the person with dementia has been exposed to abuse by another person during the past 12 months.
* Reporting or not reporting that the person with dementia has been exposed to abuse earlier in life, i.e. more than 12 months ago.

After completion of data collection, the REAMI is filled out by a health or social care professional with knowledge about the participant with dementia. Validity of the instrument will be calculated using the information provided in the interview as the gold standard (aim 2).

All interviews are recorded and transcribed verbatim. Analyses of the qualitative interviews will be made to explore experiences of abuse among participants (aim 3).


Eligibility Criteria:
Inclusion Criteria:

* Patient: Being diagnosed with dementia of mild to moderate degree (assessed by the Global Deterioration Scale (GDS) level 4 or 5)
* Next of kin: Being the next of kin to a person with dementia, GDS = 4-7

Exclusion Criteria:

* Both patient and next of kin: Severe psychiatric disorder, not being able to answer the questionnaires or participate in an interview, e.g. due to insufficient proficiency in Swedish, aphasia, hearing loss or similar.
* People with dementia: experiencing symptoms that may be exacerbated by study participation or make results less reliable (e.g. paranoia).