Dr Jem Bhatt on the negative treatment and discrimination faced by dementia carers
Dr Jem Bhatt from the UCL Unit for Stigma Research conducts psychosocial dementia research, and investigates the discrimination faced by dementia carers.
What first attracted you to this area of dementia research?
Dementia is life changing, not just for an individual but for those around them as well. People living with dementia are often marginalised, ignored and unsupported.
I became attracted to this area of research because I always want to amplify the voices of people affected by dementia that are typically unheard and empower them to feel heard.
You investigate how dementia carers face negative treatment and discrimination – can you tell us more about this?
Carers may often face discrimination from others around them and as a result they might experience some unpleasant psychological and behavioural consequences. We found that carers who perceive stigma from others, such as being treated more negatively or avoided by people, are also more likely to have negative feelings towards the person living with dementia and they may also avoid making new friends.
This example is taken from a study where we tested the Family Stigma Instrument (FAMSI) with carers of people living with dementia for the very first time. Results show that the instrument is a good way of measuring stigma and the findings themselves give us useful insight in to some of the difficulties carers can face in their roles.
Why do you think this is such a widespread problem?
A couple of things spring to mind. Firstly, the stigma experienced by carers is not enough of a priority institutionally and structurally, and therefore now more so than ever it is critical to start strengthening our anti-stigma response at these levels.
Secondly, carers save the economy billions of pounds yet often we are unable to meet their needs in order to support them properly on a day to day basis. For example, there are currently no anti-stigma or stigma resistance interventions available for carers who want support around dealing with stigma.
How do you think the stigmatisation facing dementia carers should be addressed?
Generally speaking, the most successful ways of tackling any kind of stigma is targeting all levels: intrapersonal, familial, interpersonal, and institutional/structural.
Our research shows that carers experience stigma but there aren't interventions targeting this embedded into the dementia pathway. If we were able to find ways to support carers in managing stigma and building stigma resistance (e.g. policy, educational programmes/initiatives, one-to-one interventions, and group based work) we might be able to improve the existing formal care pathways.
We know that psychological distress felt in families can affect the behavioural and psychological symptoms of the person living with dementia, so there is a strong case for us to work with carers in helping them deal with the distress caused by stigmatisation.
Can you tell us about your future research plans?
The field of stigma in relation to carers of people living with dementia is still so new. There is a lot to be done in the future.
I would certainly like to do more work around stigma measurement in different communities because it isn’t just the stigma in relation to their status as a carer we need to consider, we also need to consider other intersections such as gender, sexual orientation, religion, immigration status, disability status, English as one’s first language, that are some (but not all) of the characteristics that may make a carer more or less vulnerable to stigmatisation.
In future research I would like to look further at the complexities of stigma impact in carers and understand how different intersections change or challenge the experience of stigma and how we can better support carers to overcome stigma. I would also like to look at the longer term impact of stigma on carers and their markers of health to inform early and timely interventions.