What barriers exist that prevent people from seeing themselves as unpaid caregivers/ carers and getting the help and support they need? Why don’t you see yourself as a caregiver?
There are 10.58 million unpaid caregivers/ carers in the UK and it’s estimated that 6000 more people become carers every day1. That means one in five of us are estimated to be caregivers but are we visible?
Ask yourself when did you realise you were an unpaid caregiver/carer?
Were you one of the 54%, that took over a year to realise they were caregivers or the 24% that took over 5 years or were you the one in ten (9%) who realised within 10 years that they were caregivers?2 Why does it take so long before you realise that you’ve become an unpaid caregiver.
We can’t be visible to society, or get the support or help we need if we’re not identified. You can read more in this article on ‘Why it’s important to identify as a caregiver?’
Unpaid caregivers remain hidden in society, not visible or valued because there is an over-reliance on self-identification. Despite recent legislation putting the onus on local government and health authorities to help identify caregivers more needs to be done to ensure that they are identified as early on in the process as possible for them. It takes too long to self identify for some people.
Were you like Kristen, who has been caregiving for over 20 years for her son with chronic schizophrenia but only realised her role after working with a carer organisation.
“At first I didn’t realise I was a carer it actually took me about 10 years to realise, it was only when I started working in the job that I am in and I worked with carers organisations that I realised I was a carer, prior to that I was Stewart’s mother and that was it really.”
The term unpaid caregiver just isn’t even thought of because we simply refer to ourselves in terms of our relationship, daughter, wife, partner etc.
Parent caregivers with children with complex needs or who are disabled take far longer to identify as caregivers, one in 3 caregivers took longer than 5 years. 1 in 4 carers of those caring for someone with mental health needs took longer than 5 years.
You might not realise to begin with as the role started small but grew over a long period of time, to the point where you’re supporting your loved one in everyday tasks and you just didn’t see the changing nature of your relationship.
Perceptions of Caregiving
You can be an unpaid caregiver even if you don’t live with them or even live close by. It’s not the location that’s important but the support that you provide that defines you as a caregiver.
It doesn’t mean that if you’re in full-time work you can’t be an unpaid caregiver as well.
It doesn’t mean that you’re not a caregiver if the person you support tries to resist your help or doesn’t believe they need the help. You still provide it – don’t you?
It doesn’t mean that you have to do it on your own. You may be sharing the caring responsibility with a family member, sharing doesn’t make you less of a caregiver!
There aren’t any minimum requirements about the time involved unless you want to try to claim government benefits. Being a caregiver is about supporting someone with an illness, disability, mental illness, or addiction which means they cannot cope without your help.
You still provide unpaid support whether that’s emotional, physical, financial, or psychological support to help your loved one live because they can’t manage without you.
The term caregiver is also confused with the paid position of a care worker, where someone is employed to come to people’s homes or work in care homes etc in a paid position.
Care workers are trained, have set hours so they can clock off at the end of their shift, have holiday time & pay etc, and are the complete opposite of an unpaid caregiver.
The problem is the two terms are often used interchangeably, we have even seen politicians who should know better not knowing the difference between a care worker and a caregiver/carer.
Also, there isn’t a consistent term for someone who provides unpaid care for a loved one. We’ve got informal carers, unpaid carers, caregivers or care partners, sandwich carers, parent carers. So how are caregivers expected to identify as such when the language and terms used are often mistaken for paid care workers.
It’s also seen by some caregivers as demeaning, not reflecting the actual role that they do, some find it belittling in some way, especially if you moved from a prominent career position to a full-time caring role.
Cultural obligations also play a part. In some cultures, it’s a sense of duty or obligation to look after family and they don’t define themselves as caregivers. They don’t see this as a role outside of the family or to be classed as such.
Some caregivers worry that identifying themselves as that will have a detrimental impact on their career prospects. Even though discrimination laws exist to prevent that, and caregivers have employment rights, doesn’t mean it doesn’t happen!
Young caregivers may fear authorities taking action if they tell someone they’re caring, especially where they care for a lone parent. It’s estimated there are around 800,00 young carers looking after family members with complex needs, mental illness, substance abuse etc.
They fear being bullied at school because their extra responsibilities prevent them from taking part in school & social activities fully.
Just like adult carers, many of them do not recognise that they are caregivers, rather they just see themselves as looking after mum and dad, being their emotional or physical support and even taking over the parenting duties of other siblings.
The impact on a young caregiver’s educational, emotional, social and mental health needs can be long term and devastating if they’re not identified and support mechanisms aren’t implemented.
Small changes can make a massive difference. Local authorities and health organisations have a duty to identify young carers and many initiatives have been set up to help identify them.
Listen to these tops tips for GPs to help identify & signpost young carers
So what do we need to do?
We need to change the conversation. Why Don’t I See Myself as a Caregiver?- rephrase what we’re asking people, not are you a caregiver but do you help with washing and dressing, do you prepare meals, handle medications, help with physically moving someone, provide emotional & psychological support, do you help with toileting, do you do their shopping and cleaning?
We need to get out in the community more, use the interactions we have at GP practices, schools, community groups, health centres, emergency call outs for their loved ones etc to spot the signs of someone who is a caregiver to get them the support they need before THEY hit a crisis point.
Let me know when did you realise you had become an unpaid caregiver/carer?
- Make Caring Visible, Valued and Supported – Carers Week 2022 report
- Missing out – The identification challenge, Carers UK