259 Understanding carer harm- insights from family carers of people living with dementia and dementia professionals

Abstract

Abstract Background ‘Carer harm’ is when carers experience violence or become subject to controlling or coercive behaviour, either on an incidental or systematic basis, resulting in physical, psychological and/or sexual harm. Little is known however about the harm experienced by carers at the hands of the person to whom they provide care. Challenges are often faced by social workers and other professionals when care and violence intersect, and a service user is the alleged perpetrator of abuse against their family carer. This study explores the concept of carer harm from the perspective of family carers of People Living with Dementia (PLwD) and dementia professionals. Methods The project deploys an engaged research approach that produced knowledge in collaboration with family carers and professionals. Work Package 1 involved narrative interviews with four family carers of PLwD who self-identified as experiencing carer harm. Work Package 2 involved two focus groups. One with Family Carers Ireland staff and one with dementia professionals. Work Package 3 comprised one World Café Co-Design Workshop with family carers, professionals, and service providers where education and training materials were developed. Results Findings indicate high levels of unmet need and psychological distress with family carers of PLwD regularly experiencing verbal and physical aggression. Stigma and shame were identified as barriers for family carers in disclosing their experiences of carer harm. Professionals reflected on their immense feelings of helplessness and frustration about their inability to respond, highlighting the link between carer harm and the absence of appropriate condition-responsive services. Conclusion Information booklets for family carers of PLwD were developed to raise awareness of carer harm and to empower family carers to protect themselves and seek help. A practice guide was also developed for professionals and support organisations in order to improve our understanding of and responses to, those experiencing carer harm.