Carer (UK, NZ, Australian usage) and caregiver (US, Canadian usage) are words normally used to refer to unpaid relatives or friends who support people with disabilities. The words may be prefixed with "Family" "Spousal" or "Child" to distinguish between different care situations. Terms such as "Voluntary caregiver" and "Informal carer" are also used occasionally, but these terms have been criticized by carers as misnomers because they are perceived as belittling the huge impact that caring may have on an individual's life, the lack of realistic alternatives, and the degree of perceived duty of care felt by many relatives.
A paid worker may be referred to as a "care worker", "professional caregiver", "Direct Support Professional", "personal assistant", "healthcare assistant (HCA)" or "care assistant", but there is a considerable degree of variation and overlap in everyday and professional usage and "carer" is sometimes used informally as a synonym.
A widely-accepted definition of a carer/caregiver is:
More recently, Carers UK has defined carers as people who "provide unpaid care by looking after an ill, frail or disabled family member, friend or partner". Adults who act as carers for both their children and their parents are frequently called the Sandwich generation.
Around half of all carers are effectively excluded from paid employment through the heavy demands and responsibilities of caring for a vulnerable relative or friend. Their work has huge economic and social impact. With an increasingly aging population in all developed societies, the role of carer has been increasingly recognized as an important one, both functionally and economically. Many organizations which provide support for persons with disabilities have developed various forms of support for carers as well.
IACO is headquartered in London. Initial IACO projects included promotion of a United Nations Day for Carers and a presentation on the IACO as part of a half-day workshop at the International Federation on Aging conference in Singapore on August 4, 2004. National family carer organizations in all countries are encouraged to join the alliance.
The last step is a feedback research action phase based both on the study results and on the pan-European expertise. A European Carers’ Charter in progress will be further developed by the new European network organization EUROCARERS in order to stimulate further activities both on national and European policy levels.
EUROCARERS was formally launched in June 2007 to provide a united voice at European level and influence policy both nationally and within the European Union. Eurocarers currently comprises representatives of 18 organisations and research bodies from nine countries. Members have come together to influence policy within the European Institutions to ensure that the invaluable contribution of carers is recognised across Europe.
Carers who provide care for 20 hours a week or more are regarded as being at the ‘heavy end’ of caring (Parker 1990). This assumes that they are the most involved carers, providing both personal and physical care, resulting in high levels of stress and most in need of support services. Many of these carers however, continue to provide care without support from social work or health services and because of this they remain hidden or invisible (Scottish Executive 2006, Cavaye 2006).
Carers are viewed by the government as an important resource and in recent years have been given increasing recognition in health and social care policy. Since devolution in 1999 legislation and policy for caregivers has been developed by the former Scottish Executive (now Scottish Government).
Carers in Scotland are regarded as ‘partners’ in the provision of care. As a result, support services provided to carers are regarded as part of the overall package of care to the person being looked after. This means that carers are not seen as service users and are therefore not responsible for the cost of any service provided. The exception to this is when a carer is looking after their partner; in that situation their income may be taken into account during a financial assessment.
This situation is different from that which exists in England where carers are viewed as services users in their own right and as such are liable for the cost of services provided. Yet, in many cases, it is not the carer who actually needs the service; it is the person being cared for who needs it because of their illness or disability.
Research has shown that becoming a carer can have many impacts on a person's life. These include financial costs, exclusion and discrimination at work, social isolation and poor health through stress and physical injury.
At least half of all carers are in full or part time employment and some care for more than one person. Carers save the UK economy an estimated £87bn a year, CarersUK.org and economic considerations form a key element in government policy to support carers.
The 2001 Census indicated that there are 175,000 young carers aged under 18 in the UK today. However, a poll commissioned by The Princess Royal Trust for Carers in 2004 indicates that the number of young carers could be much higher.
The survey also found that caregivers are often burdened by high out-of-pocket costs in caring for a spouse or parent, but:
More than ¾ of caregivers are female. Nearly ¾ range in age from 35 to 59.
Other information about US caregivers: More than 50 million people provide care for a chronically ill, disabled or aged family member or friend during any given year.
1.4 million children ages 8 to 18 provide care for an adult relative; 72% are caring for a parent or grandparent. Fortunately, most are not the sole caregiver.
30% of family caregivers caring for seniors are themselves aged 65 or over; another 15% are between the ages of 45 to 54.
The value of the services family caregivers provide for "free" is estimated to be $306 billion a year. That is almost twice as much as is actually spent on homecare and nursing home services combined ($158 billion).
Even though most families take great joy in providing care to their loved ones so that they can remain at home, the physical, emotional and financial consequences for the family caregiver can be overwhelming without some support, such as respite. Respite provides the much needed temporary break from the often exhausting challenges faced by the family caregiver.
Respite is the service most often requested by family caregivers, yet it is in critically short supply, inaccessible, or unaffordable regardless of the age or disability of the individual needing assistance. While the focus has been on making sure families have the option of providing care at home, little attention has been paid to the needs of the family caregivers who make this possible.
Close to 80% of all long-term care is now provided at home by family caregivers to children and adults with serious conditions, including mental health issues, amyotrophic lateral sclerosis (ALS), multiple sclerosis (MS), traumatic brain injury, cancer, paralysis, developmental and physical disabilities, cognitive impairments and Alzheimer's disease. Parents and family caregivers are the backbone of the long-term care system and save health-care insurers and governments billions of dollars annually.
Research has shown that providing respite can have a positive effect on the health of the caregiver(see references below).
Without respite, not only can families suffer economically and emotionally, caregivers themselves may face serious health and social risks as a result of stress associated with continuous caregiving. Three fifths of family caregivers age 19-64 surveyed recently by the Commonwealth Fund reported fair or poor health, one or more chronic conditions, or a disability, compared with only one-third of non caregivers.