A caregiver can be defined as someone who provides care for someone else in the form of time and labour-intensive tasks. These tasks can involve help in activities of daily living (e.g., bathing), medical tasks (e.g., medication management), and overall assistance where one may be limited in their ability to independently do something.
I am currently an MSc student in Neuroscience, and I am working as a research assistant at the SPI Lab on the PRENAYOGA study, a prenatal yoga intervention for ethnic minority women. Last year, as a Summer job, I worked part-time as an Adult care and support worker for individuals with epilepsy and other complex needs. In this article, I want to discuss the mental health of carers and the lack of support available. This is important to me as working as a carer has provided me with insight into the experiences of other carers including my colleagues.
Types of caregivers
There are two subgroups of caregivers: formal and informal. Formal caregivers are those providing care in a formal setting such as a care home or hospital. Informal caregivers are usually family members providing care in a home setting and are generally not paid for their work. As my job was part-time, I received pay for my work and therefore I identified as a formal caregiver.
The caregiver identity theory is a conceptual framework that outlines caregiving as a process of change and that changing caregiving roles emerge from a pre-existing relationship role. Examples of pre-existing relationship roles are a child caring for a parent or a spouse caring for their partner. This concept allows caregivers to make sense of personal experiences, actions, and emotions and helps guide subsequent behaviour because the theory explains the intricacy of caregiver identity and how it is related to multiple factors within experiences of caregiving. I feel this doesn’t apply to me as much as I was a formal caregiver, but I decided to add this, in hopes that those who are informal caregivers and are reading this blog may relate to and help make sense of their own experiences and identity.
Mental Health of Caregivers
Caregivers are affected mentally and physically when providing care. Alzheimer’s Research UK found that 48.4% of carers of people with dementia have a long-standing illness or disability, and 63.5% say they have had no to little support (mentally and financially). It has also been suggested that carers who are motivated by guilt, duty, or sociocultural norms are more likely to resent their caregiving role and undergo more psychological distress than carers with more positive motivations such as a sense of love or reciprocity and internal fulfilment. The main sociocultural motivations for caregiving are suggested to be cultural and spiritual beliefs, gendered roles, and willingness to provide care.
In my personal experience, there are many diverse caregivers coming from different backgrounds with different norms and expectations. There was a colleague I worked with from African roots, and he was a joy to work with. He introduced his love for music and dance to me and the residents, and I could see he enjoyed providing care to the residents. Among the residents was someone whom only females could provide care for, and I could see that some of the male caregivers hardly interacted with her if at all, with the exception of this one male colleague. This showed the gendered roles and how they affected the relationship further than care. It is important to note that while the resident was 'female-only', it is not to say that male carers couldn’t have still provided entertainment or companionship. Furthermore, I witnessed the difference in the care provided by the permanent staff who had built a deeper rapport with the residents, compared to the temporary staff. This is not to say that all temporary staff are worse at providing care of course, but the more obvious differences tended to be from those temporary colleagues.
The Weight of the Caregiver Role
As a formal caregiver, I never felt any resentment towards my role, rather I had a more positive mindset and believed that the work and effort I was putting in would hopefully make my residents’ day better.
I won’t deny that there weren’t any stressful situations where I considered quitting, but the happier memories outweighed that. One particular situation I remember when I considered quitting was the first few times I witnessed a seizure. I remember feeling scared and helpless and wondering if the role was right for me. The thing I found the most stressful was the lack of staff available, some days we would have a good head count for a shift, but other times it didn’t feel like enough, and I remember feeling like I was running around the care home trying to multi-task my residents’ needs while handling other duties such as cleaning. I felt especially guilty during these times as we couldn’t take our residents to activities due to being short-staffed. The majority of my residents had epilepsy so every shift was different. Some days there wouldn’t be any seizures, other days there would be multiple seizures which did make the shifts harder sometimes. I believe I identified positive aspects of my caregiving role, allowing me to keep going as the effort and care I was providing was hopefully improving the quality of life for my residents – the smiles and laughs were the best experiences.
Researchers observed that caregivers who identify greater positive components of their role experience less burden, improved health, and relationships, and better social support. This expresses that there are both positive and negative aspects of caregiving which in turn can lead to different outcomes and feelings. I remember going for a walk with my residents around a lake and that was a great day out. I believe I got closer to my residents, and they seemed to enjoy the different environment instead of constantly sitting in the lounge and watching TV. I tried to keep a positive mindset and kept a smile on my face whenever I saw my residents as I believed they had it hard enough as it is and deserved to have more positive components in their day-to-day lives. I worked hard to build a personal rapport which I believe helped the trust between me and my residents.
A Parting Note...
In summary, caregivers offer more than just physical care to their patients, and this can include mental and financial support. There are a lot of tough times working in care and caregivers should be appreciated more for the work and effort they provide for their residents. It can be hard to remember to take care of yourself when you’re busy looking after others, so going forward I want to remind others who seem to have forgotten to take care of themselves to do so especially caregivers.