How being obliged, willing and prepared to care affects carers' well-being

Lead Investigator: Dr Sahdia Parveen
Institution: University of Bradford
Grant type: Junior Fellowship
Duration: 3 years
Amount: £224,834
Scientific Title: Being obliged, willing and prepared to care: A study on how to support current and prospective carers. 

Why did we fund this fellowship?

Comments from members of our Research Network:

'This is an area of thought, which is not often discussed and it may challenge assumptions'

'An important topic that could potentially shape attitudes towards the future planning of Dementia home care' '

'Given the essential role of current and future carers- from various communities- well researched information about effective ways of supporting them is extremely important'

What do we already know?

Due to the ageing population, it is expected that in the future, most of the support people with dementia require will be provided at home. There are currently 670,000 family members in the UK caring for a relative with dementia and approximately 290,369 young carers aged 16-24 years.

This is a long-term responsibility which often takes a toll on those providing care, with many carers experiencing stress. There are several psychological (as opposed to practical) influences that may affect carers' well-being. These include how obliged and how willing relatives feel to take on the role, and whether they feel well prepared to cope with the different aspects of caring, both at the outset and as dementia progresses.

Culture influences how carers cope with caregiving and their well-being. In Dr Parveen's PhD research, she looked at how willing and how obliged carers felt. South Asian carers reported stronger feelings of family obligation (known as 'familism') than white British carers. The white British carers felt less obliged but were just as willing as South Asian carers. 

The aims of this research are to find out more about how willingness, obligation and preparation are linked with carers' well-being, in both South Asian and white British carers; and also to find out if the next generation of carers is as willing and prepared as current carers.

What does this project involve?

This fellowship will involve following a sample of families over a period of time to find out how familism, willingness and preparedness change and how they influence carers' feelings about caring and their own well-being. If carers' feelings of being well prepared are linked with them feeling more willing to care, and with them having a more positive experience of caring, this will lead to interventions that help carers feel more prepared. 

The project will recruit 186 South Asian and white British carers who will complete a questionnaire three times over the course of one year. In addition, 10 South Asian and 10 white British carers will be invited to take part in in-depth interviews three times over 12 months. These will explore carer preparedness, obligations to provide care and willingness in more detail, to understand how they change over time. 

A questionnaire will also be developed for 170 non-carers aged 18-35, who have a person within the household, or closely related to them, aged 50 years or over who has diabetes, heart disease, a stroke, or memory problems (risk factors for developing dementia). This will help to determine what issues are important in determining willingness to care for potential future carers. This will be compared to levels of obligation, willingness and preparedness with the carers from the first part of the study.

How will this benefit people with dementia?

In these studies Dr Parveen will find out how obligation, willingness, and being prepared link with carer well-being, and with the well-being of the person with dementia. Knowing about these things will help to know where to focus new interventions for carers, for example on increasing the sense of being prepared, or on helping people feel they have some choice or control. By improving the sense of being prepared, carers will be more able to deliver better person-centred care and support the person with dementia to have a good quality of life.  

Also by understanding the cultural issues, for example family obligation, we will be better able to provide tailored interventions for people with dementia and their families. The focus on preparedness and willingness will lead to proactive interventions rather than a crisis management approach.