Primary Caregiver
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A caregiver or carer is a paid or unpaid member of a person's
social network A social network is a social structure made up of a set of social actors (such as individuals or organizations), sets of dyadic ties, and other social interactions between actors. The social network perspective provides a set of methods for an ...
who helps them with activities of daily living. Since they have no specific professional training, they are often described as informal caregivers. Caregivers most commonly assist with impairments related to
old age Old age refers to ages nearing or surpassing the life expectancy of human beings, and is thus the end of the human life cycle. Terms and euphemisms for people at this age include old people, the elderly (worldwide usage), OAPs (British usage ...
,
disability Disability is the experience of any condition that makes it more difficult for a person to do certain activities or have equitable access within a given society. Disabilities may be Cognitive disability, cognitive, Developmental disability, dev ...
, a
disease A disease is a particular abnormal condition that negatively affects the structure or function of all or part of an organism, and that is not immediately due to any external injury. Diseases are often known to be medical conditions that a ...
, or a
mental disorder A mental disorder, also referred to as a mental illness or psychiatric disorder, is a behavioral or mental pattern that causes significant distress or impairment of personal functioning. Such features may be persistent, relapsing and remitti ...
. Typical duties of a caregiver might include taking care of someone who has a chronic illness or disease; managing medications or talking to doctors and nurses on someone's behalf; helping to bathe or dress someone who is frail or disabled; or taking care of household chores, meals, or processes both formal and informal documentation related to health for someone who cannot do these things alone. With an aging population in all developed societies, the role of caregiver has been increasingly recognized as an important one, both functionally and economically. Many organizations that provide support for persons with disabilities have developed various forms of support for carers as well.


Uses

A primary caregiver is the person who takes primary responsibility for someone who cannot care fully for himself or herself. The primary caregiver may be a
family member Family (from la, familia) is a group of people related either by consanguinity (by recognized birth) or affinity (by marriage or other relationship). The purpose of the family is to maintain the well-being of its members and of society. Ideall ...
, 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 Attachment theory is a psychological, evolutionary and ethological theory concerning relationships between humans. The most important tenet is that young children need to develop a relationship with at least one primary caregiver for normal ...
as well as in
family law Family law (also called matrimonial law or the law of domestic relations) is an area of the law that deals with family matters and domestic relations. Overview Subjects that commonly fall under a nation's body of family law include: * Marriage, ...
, for example in guardianship and
child custody Child custody is a legal term regarding '' guardianship'' which is used to describe the legal and practical relationship between a parent or guardian and a child in that person's care. Child custody consists of ''legal custody'', which is the righ ...
. A person may need care due to loss of health, loss of memory, the onset of illness, an incident (or risk) of
falling Falling or fallin' may refer to: *Falling (physics), movement due to gravity *Falling (accident) *Falling (execution) *Falling (sensation) People * Christine Falling (born 1963), American serial killer who murdered six children Books * ''Fall ...
, anxiety or depression,
grief Grief is the response to loss, particularly to the loss of someone or some living thing that has died, to which a bond or affection was formed. Although conventionally focused on the emotional response to loss, grief also has physical, cogni ...
, or a disabling condition.


Technique


Basic principles

A fundamental part of giving care is being a good communicator with the person getting care. Care is given with respect for the
dignity Dignity is the right of a person to be valued and respected for their own sake, and to be treated ethically. It is of significance in morality, ethics, law and politics as an extension of the Enlightenment-era concepts of inherent, inalienable ...
of the person receiving care. The carer remains in contact with the primary health care provider, often a doctor or nurse, and helps the person receiving care make decisions about their health and matters affecting their daily life. In the course of giving care, the caregiver is responsible for managing
hygiene Hygiene is a series of practices performed to preserve health. According to the World Health Organization (WHO), "Hygiene refers to conditions and practices that help to maintain health and prevent the spread of diseases." Personal hygiene refer ...
of themselves, the person receiving care, and the living environment.
Hand washing Hand washing (or handwashing), also known as hand hygiene, is the act of cleaning one's hands with soap, soap or handwash and water to remove viruses/bacteria/microorganisms, dirt, grease, or other harmful and unwanted substances stuck to the ...
for both caregivers and persons receiving care happen often. If the person receiving care is producing
sharps waste Sharps waste is a form of biomedical waste composed of used "sharps", which includes any device or object used to puncture or lacerate the skin. Sharps waste is classified as biohazardous waste and must be carefully handled. Common medical mate ...
from regular injections, then the caregiver should manage that. Surfaces of the living area should be regularly cleaned and wiped and
laundry Laundry refers to the washing of clothing and other textiles, and, more broadly, their drying and ironing as well. Laundry has been part of history since humans began to wear clothes, so the methods by which different cultures have dealt with t ...
managed. The caregiver manages organization of the person's agenda. Of special importance is helping the person meet medical appointments. Also routine daily living functions are scheduled, like managing hygiene tasks and keeping health care products available.


Monitoring

The caregiver is in close contact with the person receiving care and should monitor their health in a reasonable way. Some people receiving care require that someone take notice of their breathing. It is expected that a caregiver would notice changes in breathing, and that if a doctor advised a caregiver to watch for something, then the caregiver should be able to follow the doctor's instructions in monitoring the person. Some people receiving care require that the caregiver monitor their
body temperature Thermoregulation is the ability of an organism to keep its body temperature within certain boundaries, even when the surrounding temperature is very different. A thermoconforming organism, by contrast, simply adopts the surrounding temperature ...
. If this needs to be done, a doctor will advise the caregiver on how to use a
thermometer A thermometer is a device that temperature measurement, measures temperature or a temperature gradient (the degree of hotness or coldness of an object). A thermometer has two important elements: (1) a temperature sensor (e.g. the bulb of a merc ...
. For people who need
blood pressure Blood pressure (BP) is the pressure of circulating blood against the walls of blood vessels. Most of this pressure results from the heart pumping blood through the circulatory system. When used without qualification, the term "blood pressure" r ...
monitoring,
blood glucose monitoring Blood glucose monitoring is the use of a glucose meter for testing the concentration of glucose in the blood ( glycemia). Particularly important in diabetes management, a blood glucose test is typically performed by piercing the skin (typically, ...
, or other specific health monitoring, then a doctor will advise the care giver on how to do this. The caregiver should watch for changes in a person's mental condition, including becoming unhappy, withdrawn, less interested, confused, or otherwise not as healthy as they have been. In all monitoring, the caregiver's duty is to take notes of anything unusual and share it with the doctor.


Keeping the person mentally alert

There is a link between
mental health Mental health encompasses emotional, psychological, and social well-being, influencing cognition, perception, and behavior. It likewise determines how an individual handles stress, interpersonal relationships, and decision-making. Mental health ...
and physical health and
mind–body interventions Mind–body interventions (MBI) or mind-body training (MBT) are health and fitness interventions that are intended to work on a physical and mental level such as yoga, tai chi, and Pilates. The category was introduced in September 2000 by the Un ...
may increase physical health by improving mental health. These practices seek to improve a person's
quality of life Quality of life (QOL) is defined by the World Health Organization as "an individual's perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards ...
by helping them
socialize In sociology, socialization or socialisation (see spelling differences) is the process of internalizing the norms and ideologies An ideology is a set of beliefs or philosophies attributed to a person or group of persons, especially those hel ...
with others, keep
friendship Friendship is a relationship of mutual affection between people. It is a stronger form of interpersonal bond than an "acquaintance" or an "association", such as a classmate, neighbor, coworker, or colleague. In some cultures, the concept o ...
s, do
hobbies A hobby is considered to be a regular activity that is done for enjoyment, typically during one's leisure time. Hobbies include collecting themed items and objects, engaging in creative and artistic pursuits, playing sports, or pursuing oth ...
, and enjoy whatever
physical exercise Exercise is a body activity that enhances or maintains physical fitness and overall health and wellness. It is performed for various reasons, to aid growth and improve strength, develop muscles and the cardiovascular system, hone athletic ...
is appropriate. Caregivers encourage people to leave their homes for the health benefits of the resulting physical and mental activity. Depending on a person's situation, a walk through their own neighborhood or a visit to a park may require planning or have risks, but it is good to do when possible. Depending on a person's situation, it may be useful for them to meet others also getting similar care services. Many places offer exercise groups to join. Social clubs may host hobby groups for art classes, social outings, or to play games. For
elderly Old age refers to ages nearing or surpassing the life expectancy of human beings, and is thus the end of the human life cycle. Terms and euphemisms for people at this age include old people, the elderly (worldwide usage), OAPs (British usage ...
people there may be senior clubs which organize day trips.


Eating assistance

Caregivers help people have a healthy diet. This help might include giving
nutrition Nutrition is the biochemical and physiological process by which an organism uses food to support its life. It provides organisms with nutrients, which can be metabolized to create energy and chemical structures. Failure to obtain sufficient n ...
suggestions based on the recommendations of
dietitian A dietitian, medical dietitian, or dietician is an expert in identifying and treating disease-related malnutrition and in conducting medical nutrition therapy, for example designing an enteral tube feeding regimen or mitigating the effects of ca ...
s, monitoring
body weight Human body weight is a person's mass or weight. Strictly speaking, body weight is the measurement of weight without items located on the person. Practically though, body weight may be measured with clothes on, but without shoes or heavy accessor ...
, addressing
difficulty swallowing Dysphagia is difficulty in swallowing. Although classified under "symptoms and signs" in ICD-10, in some contexts it is classified as a condition in its own right. It may be a sensation that suggests difficulty in the passage of solids or liqui ...
or eating, complying with dietary restrictions, assisting with the use of any
dietary supplement A dietary supplement is a manufactured product intended to supplement one's diet by taking a pill, capsule, tablet, powder, or liquid. A supplement can provide nutrients either extracted from food sources or that are synthetic in order ...
s, and arranging for pleasant mealtimes. A healthy diet includes everything to meet a person's
food energy Food energy is chemical energy that animals (including humans) derive from their food to sustain their metabolism, including their muscle, muscular activity. Most animals derive most of their energy from aerobic respiration, namely combining the ...
and nutritional needs. People become at risk for not having a healthy diet when they are inactive or bedbound; living alone; sick; having difficulty eating; affected by medication; depressed; having difficulty hearing, seeing, or tasting; unable to get food they enjoy; or are having communication problems. A poor diet contributes to many health problems, including increased risk of infection, poor recovery time from surgery or wound healing, skin problems, difficulty in
activities of daily living Activity may refer to: * Action (philosophy), in general * Human activity: human behavior, in sociology behavior may refer to all basic human actions, economics may study human economic activities and along with cybernetics and psychology may st ...
, fatigue, and irritability. Older people are less likely to recognize
thirst Thirst is the craving for potable fluids, resulting in the basic instinct of animals to drink. It is an essential mechanism involved in fluid balance. It arises from a lack of fluids or an increase in the concentration of certain osmolites, suc ...
and may benefit from being offered water. Difficulty eating is most often caused by difficulty swallowing. This symptom is common in people after a
stroke A stroke is a medical condition in which poor blood flow to the brain causes cell death. There are two main types of stroke: ischemic, due to lack of blood flow, and hemorrhagic, due to bleeding. Both cause parts of the brain to stop functionin ...
, people with
Parkinson's disease Parkinson's disease (PD), or simply Parkinson's, is a long-term degenerative disorder of the central nervous system that mainly affects the motor system. The symptoms usually emerge slowly, and as the disease worsens, non-motor symptoms becom ...
or who have
multiple sclerosis Multiple (cerebral) sclerosis (MS), also known as encephalomyelitis disseminata or disseminated sclerosis, is the most common demyelinating disease, in which the insulating covers of nerve cells in the brain and spinal cord are damaged. This d ...
, and people with
dementia Dementia is a disorder which manifests as a set of related symptoms, which usually surfaces when the brain is damaged by injury or disease. The symptoms involve progressive impairments in memory, thinking, and behavior, which negatively affe ...
. The most common way to help people with trouble swallowing is to change the texture of their food to be softer. Another way is to use special eating equipment to make it easier for the person to eat. In some situations, caregivers can be supportive by providing
assisted feeding Assisted feeding, also called hand feeding or oral feeding, is the action of a person feeding another person who cannot otherwise feed themselves. The term is used in the context of some medical issue or in response to a disability, such as when a ...
in which the person's independence is respected while the caregiver helps them take food in their mouth by placing it there and being patient with them.


Support with managing medications

Caregivers have a vital role in supporting people with managing their medications at home. A person living with chronic illness may have a complex medication regimen with multiple medications and doses at different times of the day. Caregivers may assist in managing medications in many ways. This may range from going to the pharmacy to collect medications, helping with devices such as a Webster-pak or a
dosette box A pill organiser (or pill organizer), pill container, dosette box, pillcase or pillbox is a multicompartment compliance (medicine), compliance aid for storing scheduled doses of medications. Pill organisers usually have square-shaped compartment ...
, or actually administering the medications at home. These medications might include tablets, but also cremes, injections or liquid medications. It is important that the healthcare providers in the clinic help educate caregivers since those caregivers will often be the ones that manage medications over the long term for an individual living with a chronic condition at home.


Changes to the home


Living arrangements

To have a caregiver, a person may have to decide on changes on where they live and with whom they live. When someone needs a caregiver, the two must meet, and this typically happens either in the person's own home or the caregiver's home. Consequently, this could mean that a person moves to live with the caregiver, or the caregiver moves to live with the person. It is also possible that the caregiver only visits occasionally or is able to provide support remotely, or that the person who needs care is able to travel to the caregiver to get it. A common example of this is when a parent gets older and has previously lived alone. If the parent's children are to be caregivers, then they may move in with the parent or have the parent move in with them.


Safety in the home

Persons who need care are also frequently people who need homes that are
accessible Accessibility is the design of products, devices, services, vehicles, or environments so as to be usable by people with disabilities. The concept of accessible design and practice of accessible development ensures both "direct access" (i. ...
in a way that matches their needs. If the caregiving plan calls for a check on the home, then typically this includes checking that the floor is free from hazards which could cause a
falling Falling or fallin' may refer to: *Falling (physics), movement due to gravity *Falling (accident) *Falling (execution) *Falling (sensation) People * Christine Falling (born 1963), American serial killer who murdered six children Books * ''Fall ...
, has
temperature control Temperature control is a process in which change of temperature of a space (and objects collectively there within), or of a substance, is measured or otherwise detected, and the passage of heat energy into or out of the space or substance is ad ...
which suits the person getting care, and has faucets and knobs which suit the users. To reduce risk of any major problem,
smoke detectors A smoke detector is a device that senses smoke, typically as an indicator of fire. Smoke detectors are usually housed in plastic enclosures, typically shaped like a disk about in diameter and thick, but shape and size vary. Smoke can be detecte ...
should be put in place and appropriate
physical security Physical security describes security measures that are designed to deny unauthorized access to facilities, equipment and resources and to protect personnel and property from damage or harm (such as espionage, theft, or terrorist attacks). Physica ...
measures taken for home safety.


Complications


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 Palliative care (derived from the Latin root , or 'to cloak') is an interdisciplinary medical caregiving approach aimed at optimizing quality of life and mitigating suffering among people with serious, complex, and often terminal illnesses. Wit ...
or
hospice Hospice care is a type of health care that focuses on the palliation of a terminally ill patient's pain and symptoms and attending to their emotional and spiritual needs at the end of life. Hospice care prioritizes comfort and quality of life by ...
. During
end-of-life care End-of-life care (EoLC) refers to health care provided in the time leading up to a person's death. End-of-life care can be provided in the hours, days, or months before a person dies and encompasses care and support for a person's mental and emotio ...
the caregiver can assist in discussions about
screening Screening may refer to: * Screening cultures, a type a medical test that is done to find an infection * Screening (economics), a strategy of combating adverse selection (includes sorting resumes to select employees) * Screening (environmental), a ...
which is no longer necessary. Screenings which would be indicated at other times of life, like
colonoscopy Colonoscopy () or coloscopy () is the endoscopic examination of the large bowel and the distal part of the small bowel with a CCD camera or a fiber optic camera on a flexible tube passed through the anus. It can provide a visual diagnosis (''e. ...
,
breast cancer screening Breast cancer screening is the medical screening of asymptomatic, apparently healthy women for breast cancer in an attempt to achieve an earlier diagnosis. The assumption is that early detection will improve outcomes. A number of screening tests ...
,
prostate cancer screening Prostate cancer screening is the screening process used to detect undiagnosed prostate cancer in men without signs or symptoms. When abnormal prostate tissue or cancer is found early, it may be easier to treat and cure, but it is unclear if early ...
,
bone density Bone density, or bone mineral density, is the amount of bone mineral in bone tissue. The concept is of mass of mineral per volume of bone (relating to density in the physics sense), although clinically it is measured by proxy according to optica ...
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. People with diabetes who use caregiving services, like those in a nursing home, frequently have problems using sliding-scale
insulin therapy As a medication, insulin is any pharmaceutical preparation of the protein hormone insulin that is used to treat high blood glucose. Such conditions include type 1 diabetes, type 2 diabetes, gestational diabetes, and complications of diabetes s ...
, 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.
Advance care planning Advance care planning is a process that enables individuals to make plans about their future health care. Advance care plans provide direction to healthcare professionals when a person is not in a position to make and/or communicate their own he ...
should note if a patient is using an
implantable cardioverter-defibrillator An implantable cardioverter-defibrillator (ICD) or automated implantable cardioverter defibrillator (AICD) is a device implantable inside the body, able to perform defibrillation, and depending on the type, cardioversion and pacing of the ...
(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 Arrhythmias, also known as cardiac arrhythmias, heart arrhythmias, or dysrhythmias, are irregularities in the heartbeat, including when it is too fast or too slow. A resting heart rate that is too fast – above 100 beats per minute in adults ...
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.


Responding to dementia

People with dementia need support from their caregivers, yet caregivers do no always have sufficient guidance for using multiple patient interventions. Findings from a 2021 systematic review of the literature found caregivers of patients in nursing homes with dementia do not have sufficient tools or clinical guidance for behavioral and psychological symptoms of dementia (BPSD) along with medication use. At the same time simple measures like talking to people about their interest can improve the quality of life for care home residents living with dementia. A programme showed that such simple measures reduced residents' agitation and depression. They also needed fewer GP visits and hospital admissions, which also meant that the programme was cost-saving. People with dementia can become restless or aggressive but treating these behavior changes with
antipsychotic Antipsychotics, also known as neuroleptics, are a class of Psychiatric medication, psychotropic medication primarily used to manage psychosis (including delusions, hallucinations, paranoia or disordered thought), principally in schizophrenia but ...
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, stroke, disruption of
cognitive skill Cognitive skills, also called cognitive functions, cognitive abilities or cognitive capacities, are brain-based skills which are needed in acquisition of knowledge, manipulation of information and reasoning. They have more to do with the mechanisms ...
, 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 Donepezil, sold under the brand name Aricept among others, is a medication used to treat dementia of the Alzheimer's type. It appears to result in a small benefit in mental function and ability to function. Use, however, has not been shown to ...
and
memantine Memantine is a medication used to slow the progression of moderate-to-severe Alzheimer's disease. It is taken by mouth. Common side effects include headache, constipation, sleepiness, and dizziness. Severe side effects may include blood clots ...
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 tube Eating (also known as consuming) is the ingestion of food, typically to provide a heterotrophic organism with energy and to allow for growth. Animals and other heterotrophs must eat in order to survive — carnivores eat other animals, her ...
s 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 Pressure ulcers, also known as pressure sores, bed sores or pressure injuries, are localised damage to the skin and/or underlying tissue that usually occur over a bony prominence as a result of usually long-term pressure, or pressure in combi ...
, and nausea. Whenever possible, use
assisted feeding Assisted feeding, also called hand feeding or oral feeding, is the action of a person feeding another person who cannot otherwise feed themselves. The term is used in the context of some medical issue or in response to a disability, such as when a ...
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.


Behavior changes

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 Sleep hygiene is a behavioral and environmental practice developed in the late 1970s as a method to help people with mild to moderate insomnia. Clinicians assess the sleep hygiene of people with insomnia and other conditions, such as depression, ...
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 stimulant An orexigenic, or appetite stimulant, is a drug, hormone, or chemical compound, compound that increases appetite and may induce hyperphagia. This can be a medication or a naturally occurring neuropeptide hormone, such as ghrelin, orexin or neuropep ...
s or
food supplement A dietary supplement is a manufactured product intended to supplement one's diet by taking a pill, capsule, tablet, powder, or liquid. A supplement can provide nutrients either extracted from food sources or that are synthetic in order ...
s high in
food energy Food energy is chemical energy that animals (including humans) derive from their food to sustain their metabolism, including their muscle, muscular activity. Most animals derive most of their energy from aerobic respiration, namely combining the ...
. 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 Assisted feeding, also called hand feeding or oral feeding, is the action of a person feeding another person who cannot otherwise feed themselves. The term is used in the context of some medical issue or in response to a disability, such as when a ...
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 A low sodium diet is a diet that includes no more than 1,500 to 2,400 mg of sodium per day. The human minimum requirement for sodium in the diet is about 500 mg per day, which is typically less than one-sixth as much as many diets "season ...
and feed the person what they enjoy eating despite the health consequences if that seems preferable to avoiding appetite stimulants.


Promoting self-care

Self-care Self-care has been defined as the process of establishing behaviors to ensure holistic well-being of oneself, to promote health, and to actively management of illness when it occurs. Individuals engage in some form of self-care daily with food ...
has been defined as "a process of maintaining health through health promoting practices and managing illness". Self-care may be performed for several reasons, whether in response to disease or injury, to manage chronic conditions, to maintain health, or for the preservation of self. There are many different factors that may influence self-care, including knowledge and educational background, physical limitations, economic status, culture, and
social support Social support is the perception and actuality that one is cared for, has assistance available from other people, and most popularly, that one is part of a supportive social network. These supportive resources can be emotional (e.g., nurturance), ...
, to name a few. Additionally, the process of self-care can be performed individually or with the assistance of a caregiver. Caregiver-patient interactions form dynamic relationships that vary based on multiple factors, including disease, comorbid conditions, dependence level, and personal relationship, among others. The term "caregiver" can refer to people who take care of someone with a chronic illness or a supporter who influences the self-care behaviors of another person. Couples often form an
interdependent Systems theory is the interdisciplinary study of systems, i.e. cohesive groups of interrelated, interdependent components that can be natural or human-made. Every system has causal boundaries, is influenced by its context, defined by its structu ...
relationship that is linked to their health. The close dynamics of these relationships can influence self-care behavior and transform it from a self-centered behavior to a relationship-centered behavior. Adopting a relationship-centered mindset can lead to enhanced motivation for both partners to carry out self-care behaviors and support one another in the process. Multiple studies have demonstrated the significant role that caregivers play in promoting self-care in persons with an illness. A study observing the effects of a supportive intervention for caregivers of patients with heart failure found higher and statistically significant self-care behavior scores in the intervention group. Another research study conducted by Chen et al. identified higher social support as one of the main factors associated with improved functioning and a higher quality of life in patients with chronic obstructive pulmonary disease (COPD). The presence of higher social support also had positive effects on the physical and mental health of these persons. COPD patients with a caregiver were found to have lower rates of depression and increased participation in pulmonary rehabilitation, indicating the critical role a caregiver plays in influencing patient success. As mentioned, caregivers can promote self-care in a variety of ways. A research study performed in Lebanon found that family-centered self-care has the potential to reduce the risk of hospital readmission in patients diagnosed with heart failure. Additionally, having the support of a family member can motivate patients to perform adequate self-care and increase adherence to their treatment plan. The environment surrounding a patient and disease has proved to be an important factor in improving clinical outcomes. Specifically, family-focused caregivers providing supportive interventions can help to improve the self-care behaviors of patients with various different diseases. When patients were asked to describe the influence of family or caregiver support, they stressed the critical role these supporters played in remaining on track with their medications, dietary choices, and exercise behaviors.


Clinical decision-making

Despite the evidence of self-care promotion, caregivers are consistently underused during clinical encounters. Caregivers can contribute significantly to promoting patient wellness, including promoting patient independence and self-care. However, despite studies demonstrating caregivers' daily and positive contributions to patients' self-care, and their ability to offer perceptions, insights, and concerns, providers are not meaningfully engaging caregivers during the decision-making process for chronic care management. Ignoring the caregiver not only leaves the burden of illness on patients' shoulders but may also prevent caregivers from obtaining the knowledge they need to provide clinically effective care and promote self-care. The perceptions and needs of caregivers are inconsistently and seldom incorporated in designing and implementing interventions. Supporting research concludes that when caregivers are engaged in provider-patient encounters, patients report higher satisfaction with the clinical experience. The benefits of engaging caregivers during the clinical decision-making process include—and are not limited to—better patient understanding of provider advice, enhancement of patient-provider communication, better prioritization of patient concerns, and emotional support for the patient. These benefits are essential to the performance of self-care.


Caregiver stress

The stress associated with caring for chronically ill family members may result in stress for the caregiver. This caregiver stress has been associated with higher risk of mental, and physical health problems, poorer immunity and higher blood pressure. According to a UK-based study, almost two out of three carers of people with dementia feel lonely. Most of the carers in the study were family members of friends. Home care providers (e.g. spouses, children of elderly parents and parents) themselves contribute a huge sum in the national economy. In most parts, the economic contribution or quantification of home care providers is not accounted for. However, along with the unseen and unaccounted for economic contribution, the work toll and the loss of opportunity and the physical and mental drainout is also substantial. Sometimes to provide for sick individuals proves to be both a huge physical and mental strain. In the case of professional caregivers, it has been well researched and documented in last few decades that this mental strain is much higher than those providing care for family members. Care provided for family members - especially partners who are intellectually disabled or have non-physical disorders, the degree of mental strain are high to the point of the caregivers themselves at risk of being psychologically damaged due to the high demanding situations both of physical toll complicated with non-professional work environment (lack of institutional care-giving equipment – both in terms of work-safety equipment and care providing equipment), safety concerns and behavioral issue . The physical, emotional and financial consequences for the family caregiver can be overwhelming. Caregivers responsible for an individual with a psychiatric disorder can be subject to violence. Elderly caregivers appear to be at particular risk. Respite can provide a 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 care-giving. 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. 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. A 2021 Cochrane review found that remotely delivered interventions including support, training and information may reduce the burden for the informal caregiver and improve their depressive symptoms. However, there is no certain evidence that they improve health-related quality of life. The findings are based on moderate certainty evidence from 26 studies.


Caregivers and Occupational Therapy


Non-paid Caregivers' Health

Non-paid caregivers, such as adult children or spouses, are particularly at risk for increased stress. Caregiving tasks may require 24/7 attention and supervision, which reduces the amount of time participating in other meaningful occupations such as paid work and leisure activities. In a study examining the role of spousal caregivers for stroke survivors, many non-paid caregivers reported their experience as immensely exhausting and challenging. Furthermore, spouses and other non-paid caregivers have a higher risk of developing physical and mental health problems than the general population. The British GP Patient Survey shows that the health of unpaid carers is significantly poorer than that of their non-carer peers. Guidance from social workers and occupational therapists has proven beneficial in reducing anxiety and a lower sense of burden among non-paid caregivers. Occupational therapists provide caregiver training to promote self care and holistic wellness, fall prevention, home modification, and aging in place. The goal of occupational therapy intervention is to reduce the burden of care on the caregiver. A typical plan of care begins with a questionnaire (Caregiver Burden Scale), an at-home environmental risk assessment, and determination of patient independence level to identify resources to reduce caregiver stress. Occupational therapy's underlying framework is based upon participation in meaningful tasks to promote mental, physical and emotional health. Occupational Therapists can also conduct evaluations, conduct certain interventions and consultations services remotely via telehealth. For caregivers living remotely, working from home, or otherwise have limited access to healthcare this is a vital service. Other health providers are increasingly providing services to caregivers, such as psychologists and social workers.


Society and culture


Caregiving by country

Caregiving is the regional variation of caregiving practices as distinguished among countries.


Caregiving certification

Some agencies, such as nursing homes and assisted living communities, require caregiver certification as a condition for employment. Most US states have caregiver resource centers that can assist in locating a reputable training class. In many cases, training is available at local colleges, vocational schools, organizations such as the American Red Cross, and at local and national caregiver organizations. National organizations include the National Association for Home Care and Hospice, the Family Caregiver Alliance and the National Family Caregivers Association. To become a certified home care aide in the state of Washington, the candidate will need to: Complete a home care aide application, including the Employment Verification form. Undergo a
Washington State Department of Social and Health Services The Department of Social and Health Services (DSHS) is Washington's social services department. The agency has its headquarters in Office Building Two (OB-2) in Olympia, the state capital. Annually, 2.2 million children, families, vulnerable adul ...
(DSHS) criminal background check. Complete a 75-hour basic training course approved by DSHS. Pass the home care aide knowledge and skills certification examinations.


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.


Economics

The amount of caregiving which is done as
unpaid work Unpaid labor or unpaid work is defined as labor or work that does not receive any direct remuneration. This is a form of non-market work which can fall into one of two categories: (1) unpaid work that is placed within the production boundary of ...
exceeds the amount done as work for hire. In the United States, for example, a 1997 study estimated the labor value of unpaid caregiving at billion, while the formal home health care work sector generated billion and nursing home care generated billion. The implication is that since so much personal investment is made in this sector, social programs to increase the efficiency and efficacy of caregivers would bring great benefit to society if they were easy to access and use.


Terminology

The term "caregiver" is used more in the United States, and Canada, while "carer" is more commonly used in the United Kingdom, New Zealand, and Australia. The term "caregiver" may be prefixed with "
live-in ''Live-In'' is an American sitcom created by Robert Sternin and Prudence Fraser that aired briefly on CBS from March 20 to May 22, 1989. The series focuses on young Australian au pair Lisa Wells (Lisa Patrick) integrating into the home life o ...
", "family", "spousal", "child", "parent", "
young Young may refer to: * Offspring, the product of reproduction of a new organism produced by one or more parents * Youth, the time of life when one is young, often meaning the time between childhood and adulthood Music * The Young, an American roc ...
" 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 Unlicensed assistive personnel (UAP) are paraprofessionals who assist individuals with physical disabilities, mental impairments, and other health care needs with their activities of daily living (ADLs). UAPs also provide bedside care—includ ...
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
misnomer A misnomer is a name that is incorrectly or unsuitably applied. Misnomers often arise because something was named long before its correct nature was known, or because an earlier form of something has been replaced by a later form to which the name ...
s 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.


See also

* Family carergivers * Dignity of risk *
Outline of relationships The following outline is provided as an overview of and topical guide to interpersonal relationships. Interpersonal relationship – association between two or more people; this association may be based on limerence, love, solidarity, regul ...
*
Toileting In health care, toileting is the act of assisting a dependent patient with his/her elimination needs. Methods of toileting Depending on a patient's condition, his/her toileting needs may need to be met differently. This could be by assisting th ...


References


Further reading

* * * Carol Levine, ed. (2004) ''Always On Call: When Illness Turns Families into Caregivers (2nd ed.)'', Vanderbilt University Press for th
United Hospital Fund
* Dr. Marion Somers ''Elder Care Made Easier: Doctor Marion's 10 Steps to Help You Care for an Aging Loved One'', Addicus Books, 2006. * Joyce Cavaye (2006) ''Hidden Carers'', Dunedin Press, Edinburgh, * Bonnie Campbell McGovern (2007) ''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", ''Journal of Marriage and Family'', 69, no. 1 (2007): 271-272 * Sylvia Barron Baca (2007) ''Caregiver Daily Journal'' Gardners Books * Maria M Meyer, Derr RN, Stanley, Tandberg (2014). ''Caregiving in the Comfort of Home: A Complete Guide for Caregivers''. CareTrust Publications.


External links


Becoming a Family Caregiver
a guide available in English, Spanish, Chinese, and Russian {{Authority control Unpaid work