Reasons why family members become carers and the outcome for the person with dementia: results from the CARD study

Abstract

ABSTRACTBackground: Using a representative secondary care survey for the first time, we explored family carers’ reasons for providing care. We hypothesized that carers with a positive rather than negative motivation for caring would be less abusive towards the care recipient and more likely to be caring for someone still living at home a year later.Methods: We interviewed 220 consecutively referred dementia family/friend carers from UK Community Mental Health Teams. We asked non-spousal carers why they were the main carer. Our main outcomes were the revised Modified Conflict Tactics Scale scores, measuring abusive behavior by the carer, and admission of the person with dementia to a care home.Results: Nineteen (17.1%) said they were the main carer due to the high quality of their relationship with the care recipient, their willingness to take on or their suitability for the carer role. A further 22 (19.8%) said they were the main carer due to other potential carers’ negative relationship with the care recipient, unwillingness or lack of suitability for the role. Carers who gave the latter explanation tended to be more anxious at baseline (F = 3.0, p = 0.055), reported higher abusive behavior towards the care recipient a year later after controlling for sociodemographic variables (t = 2.0, p = 0.05), and their care recipient was more likely to be admitted to a care home in the following year (hazards ratio 9.9, p = 0.040).Conclusions: We found preliminary evidence that carers’ reasons for providing care predict the well-being of the care recipient. Future studies involving dementia family carers should consider asking why the main carer assumed this role.