We talk about carer burden but what about stigma? | By Jem Bhatt
By UCL ID Stigma Blog, on 13 October 2022
Family carers save our economy £13.9 billion, yet our efforts to understand the cost of stigma on their lives has been minimal. Being treated negatively by others and discriminated against, in other words experiencing stigma, is a common experience for many family carers of people living with dementia and has been identified as a global priority. How we respond to this challenge will determine the well-being of carers in an ever ageing society which relies heavily on family carers.
There are two main conclusions of our recent study. First, we found a stigma measure that works for carers, meaning we can build up a picture of carers’ experiences as a basis for doing something about stigma they face. Secondly, the study tells us that on top of known challenges experienced by carers, the majority of carers in our study experienced stigma. But what does this actually mean?
We asked 70 family carers of people living with dementia to complete the FAMily Stigma Instrument (FAMSI), a measuring tool used with this population for the first time. We also collected some other details like carers’ age and gender. Our analysis showed that the FAMSI was reliable, essentially it did what it said on the tin. It’s great that we now have a measure but what did it actually show?
Over two thirds of carers experienced the following: being treated negatively by others when they were with the person living with dementia, no longer being invited to family or social events, and being avoided in friendship circles. Carers reported that people stopped going to their house and were more likely to treat them negatively especially when in public.
The FAMSI gave us the opportunity to ask about positive experiences of caring too. Approximately half of carers reported that their role as carer made them feel needed and allowed them to form friendships with others in a similar situation.
The number of people living with dementia and the cost of caring for them will rise substantially in the next twenty years, hence more people will care for a family member with dementia. If stigma is creating a negative impact on carers and our study has shown that we can measure this impact, then can we do something about it? The upside of having a measure that works is that we can use it in different ways. First, we can see if the FAMSI can be used in NHS settings as a way of identifying carers who require support around stigma so that their own support needs are identified and addressed. Secondly, we can use the FAMSI to see if interventions (e.g. programmes to create change) reduce the experience of stigma. Lastly, through the FAMSI we understand stigma in carers a bit better so could produce training and awareness materials to help third sector staff, health professionals, friends and other family members make carers’ lives more pleasant. All three of these FAMSI uses require more testing so we can understand how carers experience stigma, but we are off to a good start.
Stigma is a global priority because it has severe consequences for well-being. Carers in our study felt stigmatised and we need to take negative effects of stigma for them, such as being excluded and feeling isolated, seriously. Our paper is a step towards understanding how we can change the stigma experience for carers.
Want to read more about the study? Click here: Stigma among UK Family Carers of People Living with Dementia
Note: Thanks to the Alzheimer’s Society and Economic Social Research Council for funding this study.
About the author:
Dr Jem Bhatt is a researcher and trainee clinical psychologist based at the UCL Unit for Stigma Research. She is interested in stigma and how it shapes the lives of people living with dementia and their carers. You can read more about her work here.