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A caregiver, (U.S., Canadian and Chinese usage) or carer (UK, NZ, Australian usage) is an unpaid relative or friend of a disabled individual who helps that individual with his or her activities of daily living.
Caregiver may be prefixed with "family", "spousal", "child", "parent", "young" or "adult" to distinguish between different care situations, and also to distinguish them definitively from the paid version of a caregiver, a Personal Care Assistant or Personal Care Attendant (PCA). Around half of all carers are effectively excluded from other paid employment through the heavy demands and responsibilities of caring for a vulnerable relative or friend. The term "carer" may also be used to refer to a paid, employed, contracted PCA.
The general term dependent care (i.e., care of a dependent) is also used for the provided help. 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.
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.The sandwich generation is the generation of people who care for their aging parents while supporting their own children.
A caregiver is someone who is responsible for the care of someone who has poor mental health, physically disabled or whose health is impaired by sickness or old age. To help caregivers understand the role they have taken on, "Next Step in Care" outlines the following:
Tasks of a caregiver:
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.
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, 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. A poll commissioned by The Princess Royal Trust for Carers in 2004 indicates that the number of young carers could be much higher.
When compared to all other countries Italy has the highest percentage of residents who are age 65 and older. The life expectancy for males is 76.7 and 82.9 for females, and it is predicted that by 2050 these numbers will reach 81 and 86 years, for men and women respectively. In addition, the country is faced with a rapidly growing older population and a shortage of younger individuals. Furthermore, the Minister of Labor and Social Policies of Italy stated that the family plays the most important role in the quality of life of elders, and it is the primary care provider for the older populations; however, the government also provides assistance to the family care giver by the following services:
The family plays an important role in providing care to its older parents but many children still have to work so that they can survive financially and as a result many caregivers are immigrant workers. These immigrant workers come in search of work from many parts of the world such as Moldavia, the Philippines, and Peru; however, the largest population of immigrant workers come from the Ukraine. Many of the caregivers work long hours and weeks, and also leave their own families behind and send them the money they make.
The average life expectancy in the Ukraine is 61 for men and 72 for women, and as of 2005 Ukraine’s population is about 48 million of whom 15% are 65 and older. Older adults who cannot take care of themselves rely on family members, humanitarian organizations, government programs, or a combination of the three sources. According to the United Nations the Ukrainian Institute of Gerontology completed a study in 1998 which included 8,574 adults of retirement age, and the results demonstrated that older adults rely on older spouses, relatives or others, and departments of community social centers for care. In addition, 10 percent of the participants had an agreement with their caregiver(s) to trade inheritance of their property for the care that they were receiving. The United Nations also describes the very underfunded and understaffed situation of the country, which has effected the quality of services available to elders. For example, they mention that some 38,000 social workers provide care to about 500,000 older adults in need, and a total of 631 community centers and 131 social welfare units are available to provide support for the older population throughout the country. In addition to limited government and local resources many of those who could be caregivers to family members or others in the community choose to migrate to Italy.
The declining standards of living, economy, and production in the country of Ukraine could be contributing to the migration of Ukrainians to Italy and other countries abroad. It is estimated that there are close to 700,000 undocumented and approximately 195,000 legal working Ukrainian immigrants in Italy and a majority of them work as caregivers. Fedyuk mentions that many of those who move to Italy do not speak the language, work unregulated hours, may be underpaid, and usually are not prepared for all the physical and psychological requirements of being a caregiver. For instance, Fedyuk describes the working requirements of a 51 year old caregiver who only had a 2 hour break during a single day and one day off a week. Also, there is mention of a 49 year old woman who arrived to her new job and was not told the "granny" she would be caring for had an amputated arm and leg, was blind and could not speak. Those who migrate to Italy usually leave behind families and parents who require care themselves, and this puts further stress and pressure on the individual. Further research should be done in order to examine the extent of the consequences that may result to the caregiver, receiver of care, and those who are left behind in the cases of migrant Ukrainian workers.
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.
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 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.
According to the Australian Bureau of Statistics 2001 paper on the health and well being of Carers, Carers save the Australian Federal Government over $30 billion a year, according to the same statistics there are over 300 000 Young Carers (CA states that a Young carer is any carer under the age of 25) with 1.5 million potential young carers, where potential is defined as a young person who lives in a household where there is at least one person who requires full-time care (Is disabled etc.).
In Australia they also have The Australian National Young Carers Action Board (ANYCAT) whose goal is to advocate on behalf of young carers (Being young carers themselves) each board member is the sole representative of their state or territory and represent as few as 75 000 Young Carers. In Most states and Territories they have an ANYCAT equivalent team or Board in Queensland this is called Young Carers Action Board Queensland (YCABQ).
According to the National Bureau of Statistics of China 2011 report regarding China’s total population and structural changes, people belong to the age group of 60 years and above accounted for 184.99 million, which occupied 13.7 percent of the total national population at the end of 2011. The number has risen 0.47 percentage point comparing to the year of 2010. Of these, people age 65 years and above figured up 122.88 million that occupied 9.1 percent of the total and has increased 0.25 percentage points.
As a steadily increasing older population with a growing demand for long-term care, an issue of lacking of elderly care facilities as well as inadequate training for skilled caregivers has generated a social concern pertaining to elder care. According to the official Chinese media Xinhua, professionally qualified caregivers are in great request with approximately 10 million people needed to provide care for the Chinese aging population. However, the report also stated that only 300,000 people currently working as caregivers with less than 1/3 of them are trained properly.
There is no organized caregiver association in China. As a result, family members still construct the major source of caregiving in China especially in rural area where the quality of health services is a problem. A recent study aims to examine the effect of depression on family members of whom sons and daughter-in-laws carry out main responsibilities in caring for elderly parents have indicated several findings, including:
More recently, another Caregiver Reaction Assessment was conducted in China with a purpose to analyze the reliability and validity among family caregivers of cancer patients. The study recruited 400 participants from the Second Affiliated Hospital of China Medical University in Shenyang with 312 family caregivers completed the survey. This study tried to measure caregiving experience from five aspects: disrupted schedule, financial problems, lack of family support, health problems, and self-esteem. The results indicated that the Chinese version of caregiving is profoundly influenced by the conception of Confucianism that emphasizes filial piety and guides the traditional caregiving ideology. Furthermore, the average age of adult children provide care is 46 years old of whom the majorities still work to support the family. As such, adult children sometimes bear significant physical and mental strain when their personal schedule and life activities are negatively impacted.
Taiwan Today reports that currently in Taiwan only 72,000 seniors, about one third of those receiving long-term care, live in nursing institutes. The rest are taken care of by family members. Chen indicates that there were 600,000 family caregivers in Taiwan and they spent an average of 13.55 hours a day caregiving. 80 percent of these 600,000 family caregivers encountered limitations on social activities. 70 percent of them needed to take care of patients even when they did not feel well. He also mentions that 80 percent of family caregivers are women, and 50 percent of them are over 50 years old. Women are more likely to be regarded as natural caregivers because of gender expectations. Taiwanese females take care of children and spouses with chronicle illnesses to meet social norms and maintain filial piety. Among the family caregivers in Taiwan,some of them suffer from guilt, depression, nervousness, and injuries, sleeplessnes, and hopelessness. Thus, it is very esstential task to promote the capabilities of family caregivers and improve their life quality.
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:
More than ¾ of caregivers are female. Nearly ¾ range in age from 35 to 59.
Other information about US caregivers: By 2009, more than 61.6 million people provided unpaid care for a chronically ill, disabled or aged family member or friend at an estimated value of $450 billion.
1.4 million children ages 8 to 18 provide care for an adult relative; 72% are caring for a parent or grandparent, although most are not the sole caregiver.
30% of family caregivers caring for older individuals are themselves aged 65 or over; another 15% are between the ages of 45 to 54.
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 threefold:
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.
Canadian Caregivers Association is a non-for-profit organization that was established to protect the rights of Canadian families and caregivers from all over Canada and warn them about malpractices in this business.
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.
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.
EUFAMI - the European Federation of Families of People with Mental Illness - has been operating since 1992.
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. They 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 full-time carers qualify for the Carers Allowance from the government.
There is no known or formal caregiver association established in the Ukraine; however, there is an Institute of Gerontology which was established in 1958, and it has four main centers or associations which include:
This Institute has contributed research and publications which can be very helpful in assisting the older population of the country and the caregivers of this population.
The Taiwan Association of Family Caregivers (TAFC) was built in 1996. It is the first non-profit organization to voice the rights for family caregivers in Taiwan. The association encourages each city to set up a chapter in order to provide family caregivers with services. The main association is in Taipei and there are ten chapters around Taiwan. The TAFC claims that (1) The government should share the burden of family carers; (2) The government should provide well-qualified respite services; (3) The government should provide family carers with training and support; (4) Labor policy should help employees fulfill their responsibilities as family caregivers.
The TAFC provides family caregivers with a consulting hotline, newsletters of the association, in-service courses for professional personnel, support groups, and counseling services for caregivers. The association has allied with the Welfare Organization of the Elderly, Taiwan Long-term Care Professional Association, and Taiwan Alzheimer's Disease Association to build a support network for family caregivers.
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The stress associated with unsupported care for chronically ill family members may result in a condition commonly referred to as caregiver syndrome.
In the United States today there are approximately 61.6 million people (referenced above) 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 society.
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.
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.
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.
Caregiving as a Rollercoaster Ride From Hell
More than 40 million women are the main caregivers for a sick or elderly person and often to men they are married to. Psychotherapist, Dr. Denholm, states that caregiving has been awarded the nickname of "rollercoaster ride from hell" because every day is brought with new challenges, demands, and adjustments. After one goes through life-threatening illnesses, they often are stripped of their usual roles and their personality changes.
There are two ways Dr. Denholm lists to cope with these problems, they are to create written understandings which may contain finances, individual responsibilities or issues to be avoided and to avoid enabling behavior.
When an elderly member of the family moves in one most consider the different types of housing available and their formats but also family and community should be equally considered. Before moving an elderly parent in, one should ask oneself – Is this community walkable?, Are there bus lines with a stop nearby? Many cities such as Washington D.C., offer paratransit service for seniors and people with disabilities. By your elderly parent taking part of these services, not only will your stress levels be reduced but the issue of getting your parents out interacting with others and thus avoiding social isolation as well.
If you are moving your parent across town, they will still have their friends and the same social networks but as soon as they move a distance they’ll have to make new friends which can be a challenge for older parents. In this case, a senior center might be the most appropriate source for them.
There can be, however, some benefits to the caregiving experience. New research reports gains in cognitive function in older women who provide informal (unpaid) care on a continuing basis. This cross-sectional study tested over 900 participants at baseline and again after two years for memory and processing speed, functions which are necessary for many caregiving tasks. The participants were divided into three groups, those who were caregivers over the entire two-year period, those who were caregivers at the start of the study but not at the two-year follow-up, and those who were not caregivers at any time during the research period. At follow-up, those who were caregivers throughout the study had the highest scores for both cognitive functions but also the highest reported levels of stress, while those participants who were not caregivers at any time during the study had the lowest scores for both cognitive functions and the lowest reported levels of stress. These results are consistent with the healthy caregiver hypothesis which states that while those older adults who are more likely to be caregivers are healthier to start with, it is the work of caregiving that helps keep them healthier than older adults who are not caregivers. This model contrasts with the long-held idea that the stress of caregiving results in poorer functioning over time.
Taking Care of the Caregiver
Although caregiving can be rewarding for many, it is undeniably stressful as well. There are, however, strategies that caregivers and communities can use to reduce the effects of this added stress. Information, resources and support are often available through senior centers and local public health departments, but more research is needed to determine what services are helpful. Two studies that investigated the effectiveness of different interventions on the health of caregivers are described below.
The Resources for Enhancing Alzheimer's Caregiver Health (REACH) II intervention was a randomized clinical trial that provided self-care educational information and training on self-care skills, tailored to each caregiver's needs, to the intervention group, or a basic health information packet and two non-educational phone calls to the control group. Each intervention was designed to deal with a participant's personal issues using information provided by the caregiver at the beginning of the study, and researchers were personally involved during the 12 face-to-face and telephone sessions. At the end of the six-month study period, those receiving the intervention reported better physical and emotional health and less "burden and bother" with their caregiving duties than those in the control group.
Another study tested the effectiveness of three different interventions (a support group, provision of literature on self-care and caregiving, and creative movement) on five mental health variables of caregiving daughters of frail mothers. Each study participant chose the intervention that appealed to her most, rather than being randomly assigned to one. Study participants were then evaluated for self-reported irritability, depression, anxiety, stress, and concentration, and asked to assess the chosen intervention on an on-going basis. Comparing the outcomes of the five variables, the support group's self-ratings suggested greater improvement than the literature group, while the creative movement group was too small for a meaningful comparison. The participants' assessments of all three interventions were positive, with caregivers using words such as "validation," "reinforcement," and "relaxing." Those in the support group found the intervention so helpful that they continued to meet after the study's completion. All study participants agreed that they would choose to participate again, and in the same intervention group.
20 different ways for caregivers to care for themselves and let themselves relieve stress was collected from Caregivers and care managers of the Medicare Alzheimer's Project in Broward and Dade Counties in Florida. They are as follows:
What One Can Do To Prevent Or Relieve Stress
Balancing Work & Caregiving
Studies show that an estimated 25.5 million Americans face the challenges of being able to balance work and caregiving of an elderly relative 50 or older. These caregivers are often emotionally and physically drained and thus can’t perform to their full capacity at their work. Thankfully, many managers are supportive.
There are several different ways one can balance work and caregiving:
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