carer and wheelchair

Informal Carers. The hidden unpaid workforce.

What is the difference between formal and informal care?

A person who provides care and assistance to another individual such as a family member, friend or neighbour on an “unpaid” basis is defined as an informal carer.  Informal carers provide practical and emotional support to those close to them who may experience disability, chronic illness, mental health needs or recovering from an accident.  Formal care is provided by paid workers such as a nurse.

Informal Carers – I am One of 186 million.

At some point in their life 3 out of every 5 people will become an informal carer.  So if you are reading this, the chances are you belong to a very special group of people. I say special because you give your love, support and time to caring for someone close to you.  This may not be something you chose, it is indeed challenging and hard work both physically and emotionally and it has probably changed your life.  Believe me, you are special and should be celebrated by your community and society for the commitment and service you provide.  Read on and find out why.

“Informal Carers” – Global Statistics of an unpaid Workforce

It is estimated that there are over 186 million informal carers Worldwide. “Around the globe, carers are the invisible backbone of our health and social care systems, often sacrificing their own physical, financial and psychological well-being in order to provide care for a loved one”. International Alliance of care Organisations 2012

In the UK alone, economically, informal carers save the state £132 billion a year (Carers UK & University of Sheffield 2015).  Australian informal carers save their Government $60.2 billion and in America unpaid carers save their states $470 billion (International Alliance of Carer Organisations 2015).

Current available statistics highlight that there are:

  • 6.5 million in the UK (Census2011)
  • 1 million in Canada (Portrait of a Caregiver 2012)
  • 2.7 million in Australia (Carers Australia 2015)
  • 65 million in the US (Care giving in the US 2015)
  • 125 million in Europe (Glendinning et al 2009)

That makes a total of 200.2 million. However, the reality is an estimate and the likely hood is its much higher as statistics for countries such as Russia, China, Latin America and the Indian Continent are not readily available.

Who are informal carers?

An informal carer is a mother or father, wife or husband, a daughter or son, a grandmother, your neighbour, the child that is late for school, the teenager who doesn’t go out at the weekends with their friends, your friend.  “They are not limited by culture of country, they are universal, sharing common traits and facing common challenges” (Embracing Carers 2015).  The reality is that anyone can become a carer. The role does not discriminate, it doesn’t choose based on your age, gender, educational background, your income of the suitability of your home environment.

Research indicates that women aged 30 – 64 make up the highest group of informal carers Globally .   In the UK, 58 percent of caregivers are female and 42 percent are male.  In the EU, a typical caregiver is a woman between 45 and 75 years of age (Embracing Carers 2015) and for the US 66% who provide informal care to a spouse or other family member are women (www.carergiver.org).

Although informal caring roles are provided by women there are other groups of carers that are all too often invisible to society.

Young Carers                

A young carer is someone who is 18 years old or younger.  It is estimated that 7 – 8 % of children in Europe have care giving responsibilities.  More alarmingly, the majority of child carers are invisible to their public support systems. This means young carers often suffer silently.  The responsibilities of a young carer might include practical tasks such as cooking or shopping, personal care, emotional support, helping to manage finances, looking after siblings or giving medication. That’s a lot of responsibility for someone so young.

Caring responsibilities and Young Carer Well being

Children who find themselves in a caring role often experience mixed feelings about the responsibility they hold.  They want to ensure that their loved ones are looked after and may feel worried about telling people that they are carers.  Feelings of anger, anxiety and sadness are common place. For some young carers not being able to share their feelings or concerns can lead to depression and anxiety with self harm being used as a way of coping with the overwhelming emotions felt.

The impact on their lives is huge affecting their emotional well-being, confidence, education, friendships, social interactions and future opportunities.  In a study by Euro Carers (2017) 68% of young carers experienced bullying at school and a study by Carers Trust in the UK showed that 39% of young carers said that nobody at their school knew they were in a caring role.

Dementia Carers

Worldwide someone develops dementia every 3 seconds.  Currently in the UK 850,000 people are diagnosed with dementia and 5.7 million in the US.

Dementia is an umbrella term used to describe a group of illnesses that cause degeneration of brain cells, leading to what is known as cognitive decline. This means that a person with dementia may have difficulties in reasoning, concentration and short-term memory. Dementia can also affect language ability, both in terms of the way a person communicates, but also how much they can understand.

Dementia is progressive in nature, which for most people means that they will get worse over time. As the way the Dementia progresses will be different for each person, no two people will have the same experience of Dementia even if they have the same type and are the same age. (Expert Dementia Carer Training 2009, OLSW)

Caring for a loved one who has dementia poses many challenges.  Cognitive decline and personality changes can make communication very difficult, as the condition progresses keeping a loved safe can become more difficult restricting the ability to leave them on their own.  Often the carer is on 24 hour alert as many dementia sufferers find it hard to settle, particularly during the night resulting in interrupted of lack of sleep for the carer.  This has huge implications for their own personal health and well-being.

As with many unpaid carers they often put their own health need last.  A recent survey indicated that more than half (54 %) of unpaid caregivers don’t have time to book or attend their own medical appointments. 47 % have feelings of depression with almost 3 in 5 (57 %) feeling that they needed medical care/support for a mental health condition (e.g., depression, anxiety, stress) due to their role as caregiver.  Of these, a quarter had not sought medical help. (Healthcare Support Survey 2015).  Many carers identified they were using alcohol and / or smoking to cope with the stress they were feeling and over half felt over all their own health had suffered. Click here for free guide on managing carer stress

Connect with a Carer

“The majority of carers do not feel their role of supporting patients (loved ones) is understood and valued by their community” (friends, neighbours, local shops, healthcare systems, social services and local Government agencies) (Healthcare Support Survey Findings).   The chances are you are or have been a carer or you know someone in your community who is an informal carer.

So with all this in mind how can you support an informal carer?  Often it is the little things that can make a World of difference you could connect by:-

  • Listening empathically can help carers feel understood and less isolated and it is someone else to talk too. Often carers are more isolated due to their caring role.
  • Practical help such helping with some shopping, cutting the grass, putting out rubbish, posting a letter, helping with transport to attend an appointment or any of the 101 things we do to maintain a home on a daily basis generally takes time and time is a precious commodity for an informal carer.
  • Valuing an informal carer for what they do can be as simple as acknowledging the difficulty and the complexity of their role. Informal carers have many skills they have developed as part of their care role which are often overlooked.
  • Time for informal carers is precious. Any time you can give to ease their role can be really helpful. From offering to clean their windows to taking around a hot meal to offering an hour here or there can make a huge difference.  Don’t forget, this can be good for you too! See it as commiting small acts of kindness. Helping others makes us feel good and in the sharing we can learn new skills, gain new knowledge and create understanding.

Help a carer connect

For simple tips to help carer stress click here to visit the Humansense resource page

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