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Family caregivers (also known as “carers”) are “relatives, friends, or neighbors who provide assistance related to an underlying
physical
Physical may refer to:
*Physical examination
In a physical examination, medical examination, or clinical examination, a medical practitioner examines a patient for any possible medical signs or symptoms of a medical condition. It generally co ...
or
mental disability for at-home care delivery and assist in the activities of daily living (ADLs) who are unpaid and have no formal training to provide those services.”
A recent study says that 26.5% of all American adults today are family
caregiver
A caregiver or carer is a paid or unpaid member of a person's social network who helps them with activities of daily living. Since they have no specific professional training, they are often described as informal caregivers. Caregivers most commo ...
s.
[
] A 2012 report by the
Alzheimer’s Association states that 15 million of those family caregivers are caring for a person with
Alzheimer’s disease
Alzheimer's disease (AD) is a neurodegenerative disease that usually starts slowly and progressively worsens. It is the cause of 60–70% of cases of dementia. The most common early symptom is difficulty in remembering recent events. As t ...
or another
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 value of the voluntary, "unpaid" caregiving service provided by caregivers was estimated at $310 billion in 2006 — almost twice as much as was actually spent on
home care Homecare (also spelled as home care) is health care or supportive care provided by a professional caregiver in the individual home where the patient or client is living, as opposed to care provided in group accommodations like clinics or nursing ho ...
and
nursing
Nursing is a profession within the health care sector focused on the care of individuals, families, and communities so they may attain, maintain, or recover optimal health and quality of life. Nurses may be differentiated from other health ...
services combined.
By 2009, about 61.6 million caregivers were providing "unpaid" care at a value that had increased to an estimated $450 billion. It is projected that nearly one in five
United States
The United States of America (U.S.A. or USA), commonly known as the United States (U.S. or US) or America, is a country primarily located in North America. It consists of 50 states, a federal district, five major unincorporated territorie ...
citizens will be 65 years of age or older by the year 2030. By 2050 this older population is expected to double in size.
Family caregiver experience
A 2011 survey of family caregivers in the United States found that almost half (46%) take on tasks that are traditionally considered “nursing” or “medical,” such as
injection
Injection or injected may refer to:
Science and technology
* Injective function, a mathematical function mapping distinct arguments to distinct values
* Injection (medicine), insertion of liquid into the body with a syringe
* Injection, in broadca ...
s,
wound
A wound is a rapid onset of injury that involves laceration, lacerated or puncture wound, punctured skin (an ''open'' wound), or a bruise, contusion (a ''closed'' wound) from blunt force physical trauma, trauma or compression. In pathology, a '' ...
care, and operating
medical equipment
A medical device is any device intended to be used for medical purposes. Significant potential for hazards are inherent when using a device for medical purposes and thus medical devices must be proved safe and effective with reasonable assura ...
and monitors. While the family caregivers’ assumption of such responsibilities is not new, the frequency may have increased over time due to shorter hospital stays, adults living longer with significant ailments, and technological and
health care
Health care or healthcare is the improvement of health via the prevention, diagnosis, treatment, amelioration or cure of disease, illness, injury, and other physical and mental impairments in people. Health care is delivered by health profe ...
improvements allowing more nursing or medical care to be provided at home. This trend has implications for families, patients, family caregivers’ workplaces, health care organizations, and insurers, including
Medicare and
Medicaid
Medicaid in the United States is a federal and state program that helps with healthcare costs for some people with limited income and resources. Medicaid also offers benefits not normally covered by Medicare, including nursing home care and pers ...
. A survey by AARP in 2010 states that "29% of the U.S. adult population, or 65.7 million people, are caregivers, including 31% of all households. These caregivers provide an average of 20 hours of care per week."
1.4 million children ages 8 to 18 provide care for an adult relative; 72% are caring for a parent or grandparent. Fortunately, most are not the sole caregiver.
[United Hospital Fund
The United Hospital Fund of New York (UHF) is a nonprofit organization that focuses on improving health care in New York. It conducts health policy research and supports numerous health care initiatives through fundraising, grantmaking, and collabo ...]
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30% of family caregivers caring for seniors are themselves aged 65 or over; another 15% are between the ages of 45 to 54.
[
]
Caregiver gain
As discussed above, there are benefits to the caregiving experience. New research even 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.
In contrast, subsequent research has found that the benefit to family caregivers varies depending on the health of the person receiving care. Higher numbers of chronic conditions among those receiving care were associated with increased job stress, concern over making harmful errors,
hypervigilance
Hypervigilance (more accurately understood as Hyper-awareness) is a condition in which the nervous system is filtering sensory information and the individual is in an enhanced state of sensory sensitivity or sensory domination. The name itself is ...
, feelings of
depression, and feelings of
suboptimal health among family caregivers. Nevertheless, family caregivers reported that they felt emotionally closer to the care recipient and that they were making a positive contribution to the care recipient’s life. In addition, training in medical and nursing tasks was found to have a protective effect for the family caregiver. Research has also found that most family caregivers said they had not received training about
medication
A medication (also called medicament, medicine, pharmaceutical drug, medicinal drug or simply drug) is a drug used to diagnose, cure, treat, or prevent disease. Drug therapy (pharmacotherapy) is an important part of the medical field and re ...
management from a professional, but rather had learned it on their own. In addition to this, optimism significantly mediated some of the relationship between angry reaction and vitality.
Taking care of the caregiver
One of the most common negative outcomes of being a caretaker is the infringement on time and activities. In most cases, this role becomes a full-time job in itself and does not leave much time for leisure activities the caregiver liked to participate in before becoming a primary caregiver. While this seems like an obvious outcome of caregiving, it is a critical cause of depression and if steps are not taken to intervene and provide the primary caretaker with adequate off time then they will quickly become not only depressed but resentful of their role as well Other negative outcomes of being an informal primary caregiver can include an unfavorable relationship forming between the caregiver and receiver dyad as well as declines in both physical and
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 ...
of the caregiver. wide variety of health issues that arise from being a primary caregiver. They reported that when caregivers were compared to equal non-caregivers, they were found to have a 15% lower level of
antibody
An antibody (Ab), also known as an immunoglobulin (Ig), is a large, Y-shaped protein used by the immune system to identify and neutralize foreign objects such as pathogenic bacteria and viruses. The antibody recognizes a unique molecule of the ...
response and a 23% higher level of
stress hormone
Stress hormones are secreted by endocrine glands to modify one's internal environment during times of stress. By performing various functions such as mobilizing energy sources, increasing heart rate, and downregulating metabolic processes which a ...
s in their bodies. This indicates the stress and strain placed upon primary caregivers can greatly impact their health and ability to recover from illness themselves. There are, however, strategies that caregivers and communities can use to reduce the effects of this added stress. Providing a type of
respite care
__NOTOC__
Respite care is planned or emergency temporary care provided to caregivers of a child or adult.
Respite programs provide planned short-term and time-limited breaks for families and other unpaid caregivers of children with a developmenta ...
is the easiest intervention to reduce this negative outcome. It varies in forms, but the basic principle of respite care is to provide temporary care for a care recipient when their primary caregiver must be absent. It can be as informal as sitting with someone while the caregiver runs errands to a more formal setting such as an Adult Day Service or even overnight stay in an hospital or
nursing home
A nursing home is a facility for the residential care of elderly or disabled people. Nursing homes may also be referred to as skilled nursing facility (SNF) or long-term care facilities. Often, these terms have slightly different meanings to in ...
facility. 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
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 ...
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
Emotions are mental states brought on by neurophysiological changes, variously associated with thoughts, feelings, behavioral responses, and a degree of pleasure or displeasure. There is currently no scientific consensus on a definition. E ...
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
In a support group, members provide each other with various types of help, usually nonprofessional and nonmaterial, for a particular shared, usually burdensome, characteristic. Members with the same issues can come together for sharing coping str ...
, 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
Irritability (also called as crankiness) is the excitatory ability that living organisms have to respond to changes in their environment. The term is used for both the physiological reaction to stimuli and for the pathological, abnormal or excessi ...
, depression,
anxiety
Anxiety is an emotion which is characterized by an unpleasant state of inner turmoil and includes feelings of dread over anticipated events. Anxiety is different than fear in that the former is defined as the anticipation of a future threat wh ...
, stress, and
concentration
In chemistry, concentration is the abundance of a constituent divided by the total volume of a mixture. Several types of mathematical description can be distinguished: '' mass concentration'', ''molar concentration'', ''number concentration'', an ...
, and asked to assess the chosen intervention on an ongoing 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." All study participants agreed that they would choose to participate again, and in the same intervention group. Those in the support group found the intervention so helpful that they continued to meet after the study's completion. For caregivers without the ability to join nearby support groups, online support groups such as
caregiver forumcan offer similar benefits.
A different study has shown that family caregivers whose loved ones receive round the clock migrant home care services report greater satisfaction with the services, lower levels of burden, higher levels of subjective health and better well-being compared with home care services provided for only several hours per week. This is despite the fact that the group that relied on round the clock migrant home care workers had lower physical functioning.
It seems necessary to adapt tratments to caregivers’ specific characteristics (e.g. their limited availability of time and their bueden experience).
Signs of caregiver stress
Caregiver stress
Caregiver syndrome or caregiver stress is a condition that strongly manifests exhaustion, anger, rage, or guilt resulting from unrelieved caring for a chronically ill patient. This condition is not listed in the United States' ''Diagnostic and S ...
is the emotional and physical strain of care giving. 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.
Avoiding Caregiver Burnout
Caregiver stress explodes when the caregiver can't get much of a break - whether it is emotional or physical, a needed break is what makes it possible for the caregiver to function.
Th
Be Well Bistro Caregiver's Corneroffers strategies to support the caregiver such as:
Tips for avoiding burnout are to know the signs and have a plan in place to combat the burnout.
Some signs:
*
Anger
Anger, also known as wrath or rage, is an intense emotional state involving a strong uncomfortable and non-cooperative response to a perceived provocation, hurt or threat.
A person experiencing anger will often experience physical effects, su ...
or
annoyance
Annoyance is an unpleasant mental state that is characterized by irritation and distraction from one's conscious thinking. It can lead to emotions such as frustration and anger. The property of being easily annoyed is called irritability.
Ps ...
at all kinds of things
*
Exhaustion
Fatigue describes a state of tiredness that does not resolve with rest or sleep. In general usage, fatigue is synonymous with extreme tiredness or exhaustion that normally follows prolonged physical or mental activity. When it does not resolve ...
*Nagging aches and pains
*
Over eating or
Loss of appetite
Anorexia is a medical term for a loss of appetite. While the term in non-scientific publications is often used interchangeably with anorexia nervosa, many possible causes exist for a loss of appetite, some of which may be harmless, while others i ...
*Loss of interest in personal goals
*Loss of joy in doing things once loved
*Wanting to run away
It happens all too fast. And most caregiver stress can be avoided with a strategy to avoid it.
Here are some tips:
*Enlist family members to pitch in
*Enlist a friend or a few friends
*Create a care group so friends, family, or neighbors can coordinate to give the caregiver some respite
*Think Outsourcing: Make a list of all the chores you don't want to do. Find a way to bring in help. If your family or friends can't or won't help, maybe a local church group, community respite organization. Ask on Facebook if anyone in your community knows someone—or ask a local email group. Think outside the box.
*Find a local support group where you can meet people in person.
*Find a Psychotherapeutic intervention.
Banish the Negatives
Guilt, Worry and Shame serve no one. You didn't cause this. You can't control it and you can't fix it. Any time you feel these emotions, ask yourself if they are true. They aren't - but ask anyway. You are only one person. You know when you need a break. And when the person receiving care keeps adding on to you already empty reserves of energy, you can't always take it. When that happens, find a way to take a break. A full day off and way is essential. You may need to take your person to an Adult Care Day location—You might need to hire someone to stay at your house. But you have to get away.
Coach Nancy Lamb at the BeWellBistro.com has tons of tips and offers support to others. No one can do this caregiving alone. The isolation is unbearable. She writes for 3 websites and offers workshops, tips, and stress management plans. Caregiving is usually not a planned thing, but a loving person notices things are needed and starts slowly doing them. Caring for elderly parents for 23 years, and then finding herself in a situation where the caregiving just didn't end, Nancy became an unwitting expert in self-preservation while in the throes of caregiving.
Caregiving versus Caretaking
In many dysfunctional groups, there is one person who ends up being the over responsible caretaker who gets their
self-esteem
Self-esteem is confidence in one's own worth or abilities. Self-esteem encompasses beliefs about oneself (for example, "I am loved", "I am worthy") as well as emotional states, such as triumph, despair, pride, and shame. Smith and Mackie (2007) d ...
from caring for other members. They do too much for others and not enough for themselves. What it means in recovery circles is that the person is doing for others what they can and should be doing for themselves. In the alcoholic work place, people cover for the worker who routinely misses deadlines, comes in late, or gets sick too often. In the alcoholic home, it's the person who cleans up, covers up, calls in sick for another person, or does everything they can to make the home life look normal when it isn't. That is unhealthy caretaking and a learned behavior.
In a Caregiving Home, the lines can be sometimes blurred. It may start slowly when the one needing care may need help after an illness or surgery. The caregiver finds it natural to help. The patient gets used to this help. The challenge for the caregiver is to know where to draw the line. Caregiver's are naturally giving and helpful people. Compassion is their core strength—but they run the risk of caretaking when they do too much for the person. There is a need for balancing caregiving when it is needed with caretaking where it is too much of one person feeling improperly responsible for duties that should be handled by the other person.
National Family Caregivers Month
The
United States President
The president of the United States (POTUS) is the head of state and head of government of the United States of America. The president directs the executive branch of the federal government and is the commander-in-chief of the United State ...
proclaims the month of November as ''National Family Caregivers Month''. On October 31, 2017, President
Donald Trump
Donald John Trump (born June 14, 1946) is an American politician, media personality, and businessman who served as the 45th president of the United States from 2017 to 2021.
Trump graduated from the Wharton School of the University of Pe ...
proclaimed the month as ''National Family Caregivers Month''.
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See also
* Family Caregiver Alliance
Family Caregiver Alliance (FCA) is a national nonprofit caregiver support organization headquartered in San Francisco, California. FCA's purpose is to "improve the quality of life for caregivers and the people who receive their care."
History
...
References
External links
National Family Caregivers Association
Well Spouse Association
BeWellBistro
Senior Caregiver Info
International Alliance of Carers Organizations
Canadian Caregiver Coalition
Carers Australia
Carers UK
Carers Ireland
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