Caregiver

See also: Carers rights movement and Caregiving and dementia

The words "carer" (UK, NZ, Australian usage) and "caregiver" (US, Canadian usage) are 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", "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:

“Someone whose life is in some way restricted by the need to be responsible for the care of someone who is mentally ill, mentally handicapped, physically disabled or whose health is impaired by sickness or old age.”

Baroness Pitkeathley It's my Duty Isn't it? (1989)

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.

International organizations

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

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]

In the United States today there are approximately 50 million people who are caring at home for family members including elderly parents, and spouses and children with disabilities and/or chronic illnesses. Without this home-care, most of these cared for loved ones would require permanent placement in institutions or health care facilities at great cost to our society.[1]

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, multiple sclerosis, 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 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.

Carers in Ireland

The Carers Association was founded in 1987 to represent family carers and advocate for carers rights. The national census of 2006 shows that there are 160,917 people who stated that they are carers and almost 41,000 of these carers are providing 43 or more hours of care each week. We estimate that carers provide 194 million hours of care a year to the value of about 2.5 billion Euros to the economy. Approximately 33,000 fulltime carers qualify for the Carers Allowance from the government. This Allowance is means tested. The government has committed to developing a National Carers Strategy by the middle of this year 2008. Further information is available on web site at www.carersirealnd.com

Carers in Scotland

Policy and legislation in relation to caregivers living in Scotland is somewhat different from that in England, Wales and Ireland. Carers are defined by the Scottish Census as being “individuals who look after, or give any help or support to family members, friends, neighbours and others because of long-term physical or mental ill health or disability or problems related to old age” (Scotland’s Census Results Online [SCROL]. Estimates from the 2001 census put the numbers of carers in Scotland at 481,579. Of these, 175,969 are reported to provide more than 20 hours of care a week, and 24% provide more than 50 hours of care ([3].

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.

Carers in the UK

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,CarersUK.org and economic considerations form a key element in government policy to support carers.

Caregiving in the US

According to a November, 2007 survey on family caregiving, most family caregivers feel more positive about their experiences than they did just before they took on the responsibility, with significant differences in expectation prior to becoming a caregiver and the actual experience.

The survey also found that caregivers are often burdened by high out-of-pocket costs in caring for a spouse or parent, but:

• Sixty percent of the caregivers called the experience "very or extremely rewarding," a 50% jump over the number of caregivers who thought in advance they would find the experience "very or extremely rewarding." Nearly 80% (78.8%) percent of the caregivers found the experience to be at least "rewarding," an increase of more than one-third from initial expectation.

• A majority of the caregivers-nearly 54%-formed a stronger bond with the patient during the time they were together.

• Almost 60% of the respondents reported an improvement in the quality of their relationship with the person for whom they cared. By contrast, fewer than 10% said that their relationship got worse during the time they were caregivers.

• Social activities of the caregiver tend to diminish. However, the diminished social activities are replaced with an increased quality of relationship with the care recipient.

• More than 2/3 of all caregivers (68.7%) said they enjoy the tasks associated with caregiving. However, prior to assuming the role, fewer than half (45.5%) thought they would enjoy caregiving.

• The amount of satisfaction with caregiving is directly related to the type of disease from which the care recipient suffers. Caregivers of depression sufferers, cancer and cardiac disease have more difficulty than those caring for patients who suffer from diabetes, high blood pressure and arthritis.

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).

National and international organizations

• CarersConnect - A Social Place for Carers
• International Alliance of Carers Organizations
• Carers Australia
• Carers UK
• Family Caregiver Alliance (U.S.)
• LOT(Dutch Carers Association)
• National Alliance for Caregiving (U.S.)
• The Princess Royal Trust for Carers (UK)
• Socialstyrelsen: The National Board of Health and Welfare (Sweden)
• National Alliance for Caregiving
• Carers Ireland

References and additional reading

• Direct Support Professional
• Caring Today Magazine
• CAREgiver Magazines
• Directgov caring for someone - UK government information
• Elderly care
• Alzheimer's Caregiver Support Online
• AARP
• Caregiver.com Magazine
• National Family Caregivers Association
• Care for the Caregiver video clip
• Family Caregiving 101 - Web site to acclimate someone who is just starting to care for a family member, loved one or disabled child on the resources and tools available
• Well Spouse Association
• American Heart Association's Heart of Caregiving site
• Strength for Caring online resources for caregivers
• http://www.crossroads-scotland.co.uk/cislmain.htm
• Senior Caregiver Info - Large collection of articles to help caregivers know when, why, how, and where to ask for help
• Jean Griswold
• [newsletter]
• WhoWillCare.net - H.R. 1279 - Direct Support Professionals Fairness and Security Act of 2007 Advocacy and Awareness
• WhoWillCare.net - Blog
• Change.org - Stop the Direct Support Professional (DSP) Workforce Wage Crisis (Community)
• YouNeedToKnowMe.org - H.R. 1279 - Direct Support Professionals Fairness and Security Act of 2007 Advocacy and Awareness

Books

• Joyce Cavaye (2006) Hidden Carers, Dunedin Press, Edinburgh, ISBN 1903765668
• Judith M. Ashley,(2007) Into The Silence: The Power of Stillness in Living and Dying. 194 pp. ISBN 9780595440856 A Memoir. iUniverse.
• National Council for the Single Woman and Her Dependants, Roxane Arnold, and Olive Chandler, Feminine Singular: Triumphs and

 Tribulations of the Single Woman: An Anthology. London: Femina Books, 1974.

• J. Agate, (1979) Taking Care of Old People at Home, Unwin Paperbacks, London, , 61.50, 159 pp. ISBN 0049700049.
• T. Dartington, (1980)Family Care of Old People, Souvenir Press (E & A)Ltd., London, 23.95, 159 pp. ISBN 0285648853.
• J.A. Muir Gray and Heather McKenzie, (1980) Take Care of Your Elderly Relative, George Allen and Unwin, London, g5.95, 202

 pp. ISBN 0046180168.

• Bonnie Campbell McGovern, Taking Care of Barbara: A Journey Through Life and Alzheimer's and 29 Insights for Caregivers
• Ann Burack-Weissi, The Caregiver’s Tale: Loss and Renewal in Memoirs of Family Life
• Sylvia Barron Baca, Caregiver Daily Journal
• Dorree Lynn, When The Man You Love Is Ill
• Linda S. Thompson, A Caregivers Journey-You Are Not Alone
• Frank A. Fuerst, (2007) Alzheimer's Care with Dignity, Headline Books.
• Hugh Marriott, The Selfish Pig's Guide to Caring, ISBN 0954423313
• Tim Cook, The History of the Carers' Movement, ISBN 978873747360 Carers UK, 2007
• Scottish Executive (2006) The Future of Unpaid Care in Scotland, Edinburgh, Scottish Executive.
• Parker, G. (1990) With This Body: Caring and Disability in Marriage, Buckingham, Open University Press.