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:
- Take care of someone who has a chronic illness or disease.
- Manage medications or talk to doctors and nurses on someone’s behalf.
- Help bathe or dress someone who is frail or disabled.
- Take care of household chores, meals, or bills for someone who cannot do these things alone.
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.
A primary caregiver is the person who takes primary responsibility for someone who cannot care fully for themselves. It may be a family member, a trained professional or another individual. Depending on culture there may be various members of the family engaged in care. The concept can be important in attachment theory as well as in family law, for example in guardianship and child custody.
Some US states, such as California, have set out the responsibilities of the primary caregiver.
The Social Psychology of Caregiving
Informal caregiving for someone with an acquired disability entails role changes that can be difficult. The person with the disability becomes a care-receiver, often struggling for independence and at risk of stigmatisation. Simultaneously, family and friends become informal caregivers, a demanding and usually unfamiliar role. Adaptation to these role changes is complex. Caregivers and care-receivers often work together to avoid stigma and compensate for the disability. However, each side experiences divergent practical, social and emotional demands which can also fracture the relationship, creating disagreements and misunderstandings.
Caregivers and care-receivers have been found to disagree about many things, including, care needs, risks and stress, and level of knowledge. it has also been found that caregivers rate care-receivers as more disabled than care-receivers rated themselves. Noble and Douglas found that family members wanted intensive interventions which were support focused, whereas care-receivers placed emphasis on interventions that fostered independence. Many disagreements centre on caregivers’ identity, particularly their overprotectiveness, embarrassment, independence, and confidence
These disagreements and misunderstandings, it has been argued, stem in part from caregivers concealing the demands of care. Caregivers often conceal the demands of care in order to make the person receiving care feel more independent. But, this can result in the person receiving care feeling more independent than they are, and subsequently a range of misunderstandings. It has also been argued that caregivers concealing the burden of care may end up undermining their own identity, because they do not get the social recognition necessary to create a positive identity – their toil becomes invisible. This has been termed ‘the caregiving bind,’ namely, that caregivers concealing the demands of care to protect and support the identity of the care-receiver, may end up undermining their own caregiving identity.
|This section does not cite any references or sources. (March 2009)|
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:
- Find something to laugh about everyday
- Take care of yourself physically
- Eat a well-balanced diet
- Talk with someone everyday
- Give yourself permission to cry
- Get adequate rest
- Have a bowl of cheerios and milk before going to sleep to promote better sleep
- Avoid noisy and tension filled movies at night
- Reduce caffeine intake
- Seek professional help
- Take a break everyday
- Explore community resources
- Listen to music
- Learn relaxation techniques
- Attend one or more support groups and educational workshops
- Give yourself a treat at least once a month
- Read your caregiver’s bill of rights.
What One Can Do To Prevent Or Relieve Stress
- Find out about community caregiving resources.
- Ask for and accept help.
- Stay in touch with friends and family. Social activities can help you feel connected and may reduce stress.
- Find time for exercise most days of the week.
- Prioritize, make lists and establish a daily routine.
- Look to faith-based groups for support and help.
- Join a support group for caregivers in your situation (like caring for a person with dementia). Many support groups can be found in the community or on the Internet.
- See your doctor for a checkup. Talk to her about symptoms of depression or sickness you may be having.
- Try to get enough sleep and rest.
- Eat a healthy diet rich in fruits, vegetables, and whole grains and low in saturated fat.
- Ask your doctor about taking a multivitamin.
- Take one day at a time.
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:
- Learn your companies policies (done by talking to your companies Human Resources department or consulting your companies employee handbook and see what benefits your company has to offer)
- Know your rights (done by asking the Human Resources department for Family & Medical Leave Act)
- Talk to your manager
- Inquire about flex time (the possibility of working from home once or twice a week so you can also perform your care giving duties)
- Don't abuse work time (do work while you’re at work instead of using it as care giving time)
- Stay organized.
- Seek help
- Say thank you to coworkers.
Discontinuing unnecessary treatment
For some diseases, such as advanced cancer, there may be no treatment of the disease which can prolong the life of the patient or improve the patient's quality of life. In such cases, standard medical advice would be for the caregiver and patient to have conversations with the doctor about the risks and benefits of treatment and to seek options for palliative care or hospice.
Advance care planning should note if a patient is using a implantable cardioverter-defibrillator (ICD) and give instructions about the circumstances in which leaving it activated would be contrary to the patient's goals. An ICD is a device designed to prevent cardiac arrhythmia in heart patients. This is a life saving device for people who have a goal to live for a long time, but at the end of life it is recommended that the caregiver discuss deactivating this device with the patient and health care provider. For patients at the end of life, the device rarely prevents death as intended. Using the device at the end of life can cause pain to the patient and distress to anyone who sees the patient experience this. Likewise, ICDs should not be implanted in anyone who is unlikely to live for more than a year.
People with diabetes who use caregiving services, like those in a nursing home, frequently have problems using sliding-scale insulin therapy, which is the use of varying amounts of insulin depending on the person's blood sugar. For people receiving caregiving services, long-acting insulin doses are indicated with varying doses of insulin being less preferable treatment. If exceptions must be made, then use the long-acting insulin and correct with small doses of sliding scale insulin before the biggest meal of the day.
During end-of-life care the caregiver can assist in discussions about screening which is no longer necessary. Screenings which would be indicated at other times of life, like colonoscopy, breast cancer screening, prostate cancer screening, bone density screening, and other tests may not be reasonable to have for a person at the end of life who would not take treatment for these conditions and who would only be disturbed to learn they had them. It can be the caregivers place to have conversations about the potential benefits for screenings and to participate in discussions about their usefulness. An example of a need for caregiver intervention is to talk with people on dialysis who cannot have cancer treatment and can have no benefit from cancer screening, but who consider getting the screening.
Responding to dementia
People with dementia need support from their caregivers.
People with dementia can become restless or aggressive but treating these behavior changes with antipsychotic drugs is not a preferable option unless the person seems likely to harm themselves or others. Antipsychotic drugs have undesirable side effects, including increasing risk of diabetes, pneumonia, stoke, disruption of cognitive skill, and confusion, and consequently are better avoided when possible. Alternatives to using these drugs is trying to identify and treat underlying causing of irritability and anger, perhaps by arranging for the person to spend more time socializing or exercising. Antidepressants may also help. A caregiver who can try other options can improve the patient's quality of life.
People with dementia are likely to lose memories and cognitive skill. Drugs such as donepezil and memantine can slow the loss of function but the benefits to the patient's quality of life are few and in some cases there may not be any. Such drugs also have many undesirable side effects. Before using these drugs, the caregiver should discuss and consider treatment goals for the patient. If the drugs are used, then after twelve weeks, if the caregiver finds that goals are not being met, then use of the drugs should be discontinued.
People with dementia are likely to have difficulty eating and swallowing. Sometimes feeding tubes are used to give food to people with dementia, especially when they are in the hospital or a nursing home. While feeding tubes can help people gain weight, they carry risks including bleeding, infection, pressure ulcers, and nausea. Whenever possible, use assisted feeding in preference. Besides being a safer alternative to the feeding tube, it creates an opportunity for social interaction which can also be comforting to the person being fed.
Caregivers can help people understand and respond to changes in their behavior.
Caregivers are recommended to help people find alternatives to using sleep medication when possible. Sleeping medications do not provide a lot of benefit to most people and have side effects including causing memory problems and confusion, increasing risk of blood clots, and bringing weight gain. Caregivers can help people improve their sleep hygiene in other ways, such as getting regular exercise, keeping to a sleep schedule, and arranging for a quiet place to sleep.
Caregivers are recommended to help people find alternatives to using appetite stimulants or food supplements high in food energy. These treatments are not proven to provide benefit over alternatives but they do increase the risk of various health problems. One alternative to using appetite stimulants is to provide social support, as many people are more comfortable eating when sharing a meal with others. People who have trouble eating may appreciate assisted feeding from their caregiver. Depending on the situation, a caregiver, patient, and physician may decide to forgo any dietary restrictions such as a low sodium diet and feed the person what they enjoy eating despite the health consequences if that seems preferable to avoiding appetite stimulants.
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