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The importance attached to the work of caregivers has become increasingly recognized throughtout the world and this has lead to the establishment of a wide range of organizations to suppoert their work

International organizations[edit | edit source]

On February 27, 2004, the International Alliance of Carers Organizations (IACO) was launched by family caregiving organizations from Australia, the UK, Sweden, the Netherlands, and the U.S. The mission of the organization is three-fold:

  • to increase visibility of family caregiving across the lifespan as an international issue;
  • to promote the sharing of best practices in caregiving programs between countries; and
  • to encourage and provide assistance to countries interested in developing family carer organizations.

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.

Carers in Europe[edit | edit source]

EUROFAMCARE aims to provide a European review of the situation of family carers of elderly people in relation to the existence, familiarity, availability,use and acceptability of supporting services. In 2003 six countries (Germany, Greece, Italy, Poland, Sweden, United Kingdom) formed a trans-European group, systematically representing the different types of welfare-states in Europe and started a comparative study. The Pan-European Group consists of 23 countries (including the six countries, which are represented by the members of the Consortium).

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. [1]

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. [2]

Carers in the UK[edit | edit source]

According to Carers UK, and based on the 2001 census around six million people in the UK provide care on an unpaid basis for a relative, friend or neighbour in need of support due to old age, disability, frailty or illness. The population of carers is dynamic: at least a third of all people will fulfil a caring role at some point in their lives.

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, [3] and economic considerations form a key element in government policy to support carers.

UK history and legislation[edit | edit source]

Since the 1950's UK carers have become increasingly well organized in seeking recognition, improved social care services and human rights.

In 1965 the National Council for the Single Woman and her Dependants was formed following a letter to The Times newspaper by a carer, the Reverend Mary Webster, concerning the difficulties that confronted single women when they faced the complex task of earning the family living and caring for the home, the sick and the elderly. She began writing to newspapers, journals, MPs and peers drawing attention to the isolation and financial hardship that women carers were suffering. Her letters received a huge response from hundreds of women in similar situations.

Baroness Seear, then a lecturer in the London School of Economics was an early supporter. Due to her intervention, a meeting was held in the Grand Committee Room of the House of Commons. As a result of this meeting, The National Council for the Single Woman and Her Dependants was born, and the carers movement can be said to have begun. Early supporters and fundraisers included Sir Keith Joseph, MP.

During the 1960s and 70’s The National Council for the Single Woman and Her Dependants won tax concessions and pension credits for women obliged to give up work to care. In 1971 the Attendance Allowance was brought in for those needing constant care at home.

In 1976 Invalid Care Allowance was introduced - the first benefit for carers and still the only benefit specifically for carers.

1978 saw the introduction of Home Responsibilities Protection to protect carers’basic state pension

In 1981 the UK Association of Carers was formed by Judith Oliver, Sandra Leventon and others, aided by a grant of £9,879 from the Equal Opportunities Commission. It was initially refused registration as a charity, as helping carers was not at that time regarded as a proper charitable object by the Charities Commission, finally being registered in 1984. The group campaigned fiercely for Invalid Care Allowance to be extended to married women. Following a test case brought to the European Court on behalf of Jackie Drake, in June 1986 the government capitulated.

In 1982 The National Council for the Single Woman and Her Dependants was renamed "The National Council for Carers and their Elderly Dependants" in an attempt to be more inclusive and gain ground lost to other carers groups. They had opposed the extension of ICA probably because of reports that Norman Fowler had said that he would abolish ICA rather than extend it. Carers National Association was formed by the merger of the two existing voluntary organizations on May 14 1988. and was renamed Carers UK in 2001.

Specific legislation followed:

Carers (Recognition & Services) Act 1995

This Act was the first piece of UK legislation which formally recognized the role of unpaid carers and provides for the assessment of the ability of carers to provide care.

Carers and Disabled Children Act 2000

This Act makes provision about the assessment of carers’ needs; to provide for services to help carers; to provide for the making of payments to carers and disabled children aged 16 or 17 in lieu of the provision of services to them and for connected purposes

Carers (Equal Opportunities) Act 2004

This came into force in England on April 1 2005 and in Wales on April 18 2005. The Act gives carers new rights to information – Section 1 of the Act places a duty on local authorities to inform Carers of their right to a Carers Assessment. Ensures that work, life-long learning and leisure are considered when a carer is assessed – Section 2 means that when a Carer's Assessment is being completed it must take into account whether the carer works or wishes to work, any courses the carer is taking or wishes to take, and any other leisure activities the carer undertakes or wishes to undertake. Gives local authorities new powers to gain the help of housing, health, education and other local authorities in providing support to carers - Section 3 states that if the local authority requests another authority to plan services, that authority must give that request due consideration.

Government legislation affecting the care of children with disabilities includes:

  • Special Educational Needs and Disability Act 2001
  • The Children Act 1989
  • Convention on the Rights of the Child

Work and Families Act 2006

This Act, which came into force in October 2006, makes provision for improved maternity and adoption leave for women. It also extends the right to request flexible working for Carers.

Carers in Finland[edit | edit source]

There are over 300,000 (estimate) family carers in Finland

  • Of them some 29,000 receive family carer’s allowance from their respective municipalities under The Act on Family Caregiving
  • The municipality may arrange various social and healthcare servicesto backup family caring. The main types of services are home help and home nursing; meals on wheels; rehabilitation, short-term care etc.
  • The law ensures a minimum caregiver allowance of EUR 310.Caregivers in heavy caring situations will receive a minimum of EUR 620 a month. (taxable)
  • Time off for the carer: at least 3 days / month
  • When the carer is continuously or with only minor interruptions tied up to caring.
  • The Municipality has to ensure that the care for the care recipient is appropriate during family carer’s time-off. Taking days-off or recreational time do not reduce the amount of family carer allowance.

Source [4]

Caregivers in the United States[edit | edit source]

The National Family Caregivers Association was founded in 1993. According to the United States National Family Caregivers Association, "more than 50 million people provide care for a chronically ill, disabled or aged family member or friend during any given year." [5]. The vast majority of these are voluntary caregivers.

National organizations[edit | edit source]

References and additional reading[edit | edit source]

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