Stigma among UK family carers of people living with dementia

Abstract

Background Models of caregiving seldom include the role of stigma when understanding the experiences of carers of people living with dementia. Aims To investigate the validity of the Family Stigma Instrument (FAMSI), and use it to explore the extent to which experiences of stigma are endorsed in family carers of people living with dementia. Method The FAMSI was tested with 70 carers of people living with dementia. They also completed a measure of self-esteem. Results The FAMSI demonstrated some good preliminary psychometric properties. Carers endorsed stigma by association more so than affiliate stigma constructs, suggesting that carers were aware that others viewed or treated them in a stigmatising fashion but did not endorse internalised consequences of this as much (e.g. behavioural or affective affiliate stigma). Conclusions The FAMSI offers new avenues for understanding the contribution of stigma to caregiver burden in dementia. It also captures the positive aspects of caregiving, which may mitigate internalised stigma in family carers, and has good potential for evaluating stigma-neutralising interventions in dementia care.