Abusive behaviour experienced by family carers from people with dementia: the CARD (caring for relatives with dementia) study C Cooper, A Selwood, M Blanchard, G Livingston ABSTRACT Background The authors report the first study of abusive behaviour by people with dementia towards their family carers. The authors hypothesised that while abusive behaviour would be associated with the carer reporting a less rewarding relationship, this could be mediated by the carer’s coping style. Methods The authors interviewed 220 consecutively referred family dementia carers from five UK Community Mental Health Teams, using the revised Modified Conflict Tactics Scale to measure abuse, and the Relationship Rewards Scale. Results 82 (37.3%) carers reported abuse from the care recipient ‘at least sometimes’ over the last 3 months. 80 (36.4%) reported psychologically, and 13 (5.9%) physically abusive behaviour. On average, current carer relationship rewards had decreased from premorbid levels (mean difference À1.5 (95% CI 1.8 to 1.2); p<0.001). The association between higher abuse score and lower current relationship rewards was mediated by dysfunctional coping use. In our final model, current relationship rewards were predicted by reporting a better past relationship (b¼0.66 (95% CI 0.55 to 0.77)), less abuse from the care recipient (b¼À0.39 (À0.65 to e0.13)) and fewer dysfunctional coping strategies (b¼À0.98 (À1.50 toe0.46)). Conclusion Over a third of family carers reported significant abuse from the people they cared for. Carers who reported more abuse also reported a greater deterioration in their relationship with the person with dementia. The extent to which carers used dysfunctional coping strategies partially explained this, suggesting that interventions to change the carers’ coping styles might alleviate the impact of abusive behaviour. INTRODUCTION Carers for people with dementia experience more stress, anxiety and depression than the general population 1 2 and carers for people with other disorders. 3 The particularly distressing nature of dementia caring is unsurprising, given the inevita- bility of increasing dependence, and high frequency of personality changes, loss of insight and behav- ioural problems including aggression. A large USA study reported aggression or agitation in 23.7% of people with dementia in the USA, using the aggression subscale of the Neuropsychiatric Inven- tory. 4 Similarly, 20% of people with Alzheimer ’s disease in UK studies were reported to be behaving aggressively. 56 We have frequently found in our clinical work that carers report experiencing abuse from the person they care for, and that this is particularly distressing, although the prevalence of such behaviours is unknown. Family carers for younger adults with mental illness have reported high levels of abuse from the people they care for. In a UK Community Mental Health Team (CMHT) survey, 22% of family carers reported that they had been threatened with violence, and 42% verbal abuse, by the care recipient (CR) in the last year. 7 Higher rates of abuse were associated with poor relation- ships between patients and their families, and a patient history of poly-drug misuse and previous criminal offences. Relatives experiencing higher levels of abuse reported more distress and carer burden. This study is the first to investigate the preva- lence of abuse experienced by family carers of people with dementia. We use the expression ‘abusive behaviour ’ throughout. We are not, however, suggesting by this term that the person with dementia intended to abuse. We determined whether abuse experienced by family carers of people with dementia was related to how rewarding they found their relationship with the CR. Some abusive behaviour may be a symptom of neuro- psychiatric symptoms which are part of the dementia, or family stress that can be alleviated by medical or psychosocial interventions. In other cases, it may be more intractable and related to the relationship between the carer and CR, or coping strategies used to manage difficulties which predate the dementia. We know, for example, that emotion-based coping strategies can mitigate the impact of burden on dementia carers’ mental health. 8 In this study, we tested our hypotheses that abusive behaviour would be associated with lower current relationship rewards, after controlling for premorbid relationship rewards, and that the strength of this association would be mediated by carer use of dysfunctional coping strategies. METHODS This study is part of a larger study, and we have reported more details in earlier papers. 9e11 Setting and participants We recruited consecutively referred people with a clinical diagnosis of dementia; living at home and referred to Community Mental Health Teams covering London and Essex (UK). They included inner city, suburban and rural areas. We included those who had an identified family carer, who was providing care for $4 h/week. Interviews took Department of Mental Health Sciences, UCL, Charles Bell House, London, UK Correspondence to Dr Claudia Cooper, Department of Mental Health Sciences, UCL, 67e73 Riding House Street, 2nd Floor, Charles Bell House, London W1W 7EJ, UK Received 4 August 2009 Revised 27 September 2009 Accepted 28 September 2009 592 J Neurol Neurosurg Psychiatry 2010;81:592e596. doi:10.1136/jnnp.2009.190934 Research paper copyright. on February 18, 2022 by guest. 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