By Fiona Carmichael (Professor of Labour Economics), Joy Fillingham (Lecturer, Social Policy and Social Work) & Louise Isham (Doctoral Researcher and Social Worker)
Carers Week aims to raise awareness of the unpaid caregiving undertaken by 6.5 million carers in the UK. Caregivers provide help and support for ill, frail or disabled family members and friends. Many do not think of themselves as carers, they just see themselves as being a husband, a wife, a daughter, a son, a mother, father, friend or a good neighbour. The help they provide makes a large contribution to families and communities and the work carers do supports the NHS and wider social care provision in the UK. This contribution is becoming increasingly important as people live for longer and societies age. However, caregivers face many challenges, they have needs of their own and their contribution is often under-appreciated and their voices are not always heard. Carers week is about addressing these challenges, recognising the value of the unpaid work that they do and giving them a louder voice in our communities.
Who cares?
Data from the most recent wave of Understanding Society, a nationally representative longitudinal study funded through the ESRC and a consortium of government departments, indicates that 6.7% of adults are providing informal care for someone else living with them in the same household, and 13.4% of adults are caring for another family member or friend who they are not living with. The percentage of the population who will provide care at some point in their lives is of course much higher; data from the British Household Panel Survey suggests that this figure is in the region of 39% of the adult population.
Many people who provide care do so for only a few hours a week, perhaps helping another family member with their day to day living. However, data from Understanding Society indicates that 41% of carers care for 10 or more hours a week, 25% care for 20 or more hours a week and over 10% are providing care for 50 or more hours a week. For the most time-intensive carers, this is comparable with holding down at least a part-time job and in some cases a full-time job with many hours of overtime. Not surprising then that many time-intensive carers find it difficult to hold down or remain in paid employment. Among non-retired, co-residential carers who were asked by the Understanding Society survey whether their caring prevented them from doing a paid job or as much paid work, 23% said they were unable to work at all and 15% said they were unable to work as much.
Caring and ageing
The prime age for taking on a caring role is between 45 and 64. This is the age when many adults are providing more help for their parents and so it is not surprising that national surveys indicate that the majority (54.5%) of non-coresidential carers are caring for a parent or a parent-in-law. This may begin with just a few hours of help but as time goes on the caring relationship can become closer, more committed and more emotionally intense.
Caring at the end of life
An important caring role that is not often discussed is the care provided for people at the end of their lives. Most people spend the majority of the final 6 months of life at home and most prefer to die at home. While professional and third sector support is available, family and friends are the main providers of care and support for people in older age and at the end of their life.
The National Council for Palliative Care says that at least half a million people are currently caring for someone at the end of life, and this number is rising in line with the growing population of older people. As the person they care for approaches the end of life, the time given to caring is likely to increase as the health of the person cared for deteriorates. Carers may also need to take a lead role in coordinating with the professionals involved in the care. All this can mean that caring for an elderly parent can become a defining feature of a carer’s life and as most of us are likely to take on this role at some point in our lives, Joy’s experience of caring for her mother, the ups and downs and dilemmas she is facing will be shared by many of us:
“Being a carer shapes more of my life than I think I ever recognised. Seeing my Mum effectively disintegrate over the last 12+ years through dementia, specifically Alzheimer’s has often left me feeling more like a parent than a child. Her tenacity remains, but little of her speech or understanding. Amazingly we can still get her to laugh and make sure this happens every day.
Now medical staff tell us that Mum is dying and her life is likely to end in the next few weeks. What do I feel? Guilt, shame, fear. Guilt, could I have fought harder, pushed for better treatment in earlier years? Shame that I talk about such personal matters in public arenas – yet I believe only by recognising how many people are experiencing these challenges can carers move forward. Fear that a woman I love so much is going soon – and that part of me thinks that that is a ‘good thing’, as the alternatives are even less palatable. Unless she dies, she could end up in a comatose state and requiring a peg feed to take in any nutrients, retreating more and more into a world where no one can reach her and her distress is evident. So, I wait for the ‘inevitable’ and can do nothing to speed or slow the process.
This is a limbo world for me now, where undertaking everyday activities feels like playing a part and nothing feels quite real. There has been little mental space for some time – all I know is that change is coming and while it may be for the best in the long term it doesn’t alter how hard, empty and isolating it is waiting for the death of a loved one.”
Caregiving in Research
Our academics are helping to raise awareness of the work of both unpaid family carers and professional caregivers through research, teaching and civic engagement. Our research network on caregiving brings together research on both informal, unpaid caregiving and formal, professional care.
The work of unpaid and professional caregivers often overlaps. Both are engaged in emotional labour that often requires compassion, informal caregivers may also need to acquire specialised health care skills and unpaid and professional carers often need to work together to support people with care needs. However, for families, the roles and identities that caring and being cared-for can engender can be more complex. Caregiving can have a significant impact on the relationships between family members and sometimes, though rarely, there may be violence, abuse or neglect in a caring relationship, by and towards caregivers. These issues are naturally of particular concern in the case of young carers. The demands of unpaid caregiving can also impact negatively on the health and wellbeing of carers and may mean that family income is reduced if a carer needs to cut down or give up paid work.
Understanding how people cope, adapt and need support to address these kinds of issues is important for preventing and identifying situations in which relationships can break-down and the demands of illness and caring become overwhelming. The first step towards understanding is recognising and valuing the unpaid work that carers do.
Looking further
Care at the end of life
- Evaluation of End of Life Care (EconEndLife) Project at the Insitutue of Applied Health Research, University of Birmingham.
- Round, J. (ed.) 2016. Care at the end of life, Palgrave Springer.