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Caregiver syndrome or caregiver stress is a condition of exhaustion, anger, rage, or guilt that results from unrelieved caring for a chronically ill dependent. The term is often used by healthcare professionals, but it is not listed in the Diagnostic and Statistical Manual of Mental Disorders. Almost 66 million Americans are providing care to those who are ill, aged, and/or disabled for an average of 39.2 hours per week. Over 13 million caregivers are also caring for their own children as well. Caregiver syndrome is acute when caring for an individual with behavioral difficulties, such as: fecal incontinence, memory issues, sleep problems, wandering, and aggression. Typical symptoms of the caregiver include: fatigue, insomnia, stomach complaints, and so on, with the most common symptom being depression. Roughly 70% of caregivers suffer from depression. Due to the deterioration (both physical and mental) of these caregivers, health professionals have given this condition a name, caregiver syndrome or "caregiver fatigue".
Caregiver syndrome is caused by the overwhelming duty of caring for a disabled or chronically ill person. Caregiver stress is caused by an increased stress hormone level for an extended period of time. Caregivers also suffer the grief of a declining loved one, as causing a depressive exhaustive state, deteriorating emotional and mental health. "Double-duty caregivers" are those already working in the healthcare field who feel obligated to also care for their loved ones at home. This over-exhaustion and constant caregiving role can cause an increase in physical and mental health deterioration. It is actually being thought that a part of the stress of being a caregiver is from how they feel about the job. In other words if a caregiver does not like or want to be a caregiver, they will inflict more stress on themselves by accepting the role.
Symptoms of chronic stress
Those who are providing care for a friend or family member with a long-term illness undergo what is known as chronic stress. Caregiving has been shown to affect the immune system. It was found that caregivers to Alzheimer's patients were more depressed, and they showed lower life satisfaction than the comparison samples. The caregivers also had higher EBV antibody titres and lower percentages of T cells and TH cells. Caregiving has also been shown to have adverse effects on wound repair.
Symptoms include depression, anxiety, and anger. Chronic stress can create medical problems including high blood pressure, diabetes, and a compromised immune system. The impact may reduce the care-giver's life expectancy.
In severe cases of Alzheimer's, caregivers may also take on the symptoms of the patients whom they are taking care of. An example of this is progressive memory loss. Caregiver syndrome affects people at any age. For example, elderly caregivers are at a 63 percent higher risk of mortality than non-caregivers who are in the same age group. This trend may be due to elevated levels of stress hormones circulating throughout the body. These levels are similar to someone with PTSD. Because caregivers have to be so immersed in their roles, with day/night hours, they often have to neglect their own health. They are experiencing high amounts of stress along with grief since the health of their loved one is declining. Since their roles are changing from a partnership or mother/daughter, mother/son, etc. relationship to a caregiver and patient relationship, caregivers are turning to online forums such as the Alzheimer's Association for support. This role change is difficult for many people to make, causing them to experience anger, resentment, and guilt. It is difficult to provide quality care in this state of stress.
Caregivers are at risk for adverse effects on their health, due to emotional distress. Therefore, effective coping strategies such as sleep, exercise and relaxation can help prevent stress. Even after caregiving has terminated, these stressors can have long-lasting effects on the caregiver's body due to these immune alterations.
Since caregiving can further erode the caregiver's own health, many studies are being done to assess the risks that a caregiver poses when they assume this job and its effects on their immune functioning, endocrine functioning, risk for depression, poor quality of sleep, long-term changes in stress responses, Cardiovascular diseases, an increased risk of infectious disease, and even death. Resentment from the patient is what may lead to the depression and distress typically seen in caregivers. This anxiety and depression can then lead back into the health of the caregiver. Caregivers fare better when they have active coping skills, such as these coping interventions:
- Mindfulness-based stress reduction
- Writing therapy
- Coping effectiveness training
- Stress management
- Relaxation training
Nearly 15 million Americans provide care that is unpaid to a person living with Alzheimer's disease or dementia. Alzheimer's disease and dementia are often used as interchangeable words, but they aren't the same thing. Increasing evidence has shown that changes in the brain occur 15 years prior to when symptoms are first demonstrated in a person with Alzheimer's disease. This is often called a "family disease", because the stress associated with watching a loved one decline rapidly in their health affects everyone involved with their care. In order to maintain their own well being, caregivers need to focus on their own needs. They need to take time for their own health, and get the appropriate support that they need such as respite from their care-giving duties. Through training, caregivers can learn how to handle the behaviors that are challenging them, and improve their own communication skills. The most important thing the caregiver can do is keep the person with Alzheimer's safe. Research has shown that caregivers experience lower stress and better health when they learn skills through this caregiving training and participate in support groups. Participating in these groups allows caregivers to care for their family members longer in their homes.
The number of people at risk is significant. The American Academy of Geriatric Psychiatrists reports one out of four American families provide care for a family member over the age of 50. By 2030, the U.S. Census Bureau estimates a population of 71 million Americans over 65. In the U.K., over 450,000 dementia patients are cared for at home.
The American Academy of Family Physicians and the National Center on Caregiving both believe all caregivers should be screened for stress and depression and recommend providing caregivers with their own resources to help them cope.
Since family members most often assume the primary caregiver role, these strains fall upon them. Care for those that are chronically ill is irregular, so there are not many facilities that can provide adequate care. This caregiving role is more commonly assumed by women than men. Since there are some illnesses that create a more intense need for caregiving, the caregiver is responsible for almost every aspect in the patient's life. One of the positive aspects of caregiving for a loved one though is that it can improve their quality of life but when the caregiver is depleted of confidence, the recovery may be fostered.
Caring for those with PTSD
Caregiving for military service members who have experienced a traumatic brain injury or PTSD can be very challenging as well. On April 21, 2010, the U.S. Congress passed what is known as the "Caregivers and Veterans Omnibus Health Services Act of 2010". This act recognizes the importance of caregivers who are caring for Veterans, and established a program of assistance for them with benefits including covering counseling and mental health services under the benefits of Department of Veterans Affairs.
According to a November 2010 National Alliance for Caregiving study, 68 percent of caregivers for veterans had high emotional stress, 40 percent had high physical strain, 7 percent of caregivers stopped working or they took an early retirement, and 50 percent experienced high financial hardships.
Issues in health care
Since this term, "Caregiver syndrome" is widely used among physicians, but is not mentioned in the Diagnostic and Statistical Manual of Mental Disorders (DSM) or in medical literature, physicians are not always sure how to approach the issues that arise with this syndrome. Therefore, this is not addressed frequently. In a survey given by the American Academy of Family Physicians, they found that fewer than 50 percent of caregivers were asked by their doctors whether or not they were experiencing caregiver stress. If this was listed in the DSM with an official diagnosis, it could possibly stigmatize those that have it. Many believe it would be beneficial for this to receive a clinical name though, so caregivers would be able to receive the appropriate resources they need. This would encourage health care professionals to develop better strategies for treatment of Caregiver Syndrome, as well as requiring health insurance agencies to pay for appropriate treatment. Some ways to improve this syndrome have been agreed upon by experts and include the following suggestions:
- Expanding the support system for the caregiver
- Finding help in various sources for caregiver tasks
- Educating caregivers
- Paying caregivers salaries competitive with those paid to professional healthcare providers doing similar tasks, thus allowing them to retire from salaried jobs for companies where management is willfully ignorant of or unsympathetic to their workers' family caregiving burdens
- Encouraging the growth of telecommuting jobs that enable caregivers to work at home while caring for their patients
- Providing full medical benefits for caregivers and their patients
- Providing nursing and medical advice when needed, including home visits
- Providing respite services on demand
- Providing psychological counseling or psychiatric intervention for stress management
- Collecting data documenting savings for the national healthcare system made possible by home caregivers
Addressing caregiver stress
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.
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 must 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, or 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 an elderly parent taking part of these services, not only can stress levels be reduced but also the issue of getting parents to interact with others, and thus avoid social isolation, can be handled as well.
If a person is moving their parents across town, they will still have their friends and the same social networks, but as soon as they move a greater distance, then they will need 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 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." 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.
Twenty different ways for caregivers to care for themselves and let themselves relieve stress were 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 physically
- Eat a well-balanced diet
- Talk with someone everyday
- Give oneself 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 oneself a treat at least once a month
- Read a 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 to 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 similar situations (like caring for a person with dementia). Many support groups can be found in the community or on the Internet.
- See a doctor for a checkup. Talk to her about symptoms of depression or sickness might 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 a doctor about taking a multivitamin.
- Take one day at a time.
Balancing work and 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 cannot perform to their full capacity at their work. However, many managers are supportive.
There are several different ways one can balance work and caregiving:
- Learn employer policies (done by talking to the employer's Human Resources department or consulting the company's employee handbook and see what benefits the company has to offer)
- Know caregiver rights (done by asking the Human Resources department for Family & Medical Leave Act)
- Talk to the manager on the job
- Inquire about flex time (the possibility of working from home once or twice a week to help perform caregiving duties)
- Don't abuse work time (do work while at work instead of using it as caregiving time)
- Stay organized
- Seek help
- Say thanks to coworkers.
Where to find help
Services that may be helpful to caregivers include:
- health services in the home
- companion or chore services
- day care centers for adults
- respite care, time out at nursing homes, or assisted living facilities
- legal advice
- money management
- support groups
- educational programs
The Resources for Enhancing Alzheimer's Caregiver Health (REACH) Project was created in 1995. This project was designed to enhance family caregiving for those who were taking care of relatives that have Alzheimer's disease and other related dementia (ADRD). This program includes:
- Support groups
- Behavioral skills training programs
- Family-based systems interventions
This program was designed specifically for people who are caring for a loved one with Alzheimer's Disease or Dementia at home, and makes it possible for those with dementia to live in the own homes longer by addressing these problems of caregiver health that force the caregiver to move their loved ones to assisted-living facilities. If they can manage the challenges that come along with caregiving better, both will benefit from this. Special one-on-one training is provided for the caregiver, as well as counseling. This allows them to be more effective in their caregiving roles. They receive help directly from dementia care specialists who work with the client on an individual basis to find solutions to problems such as:
- Caregiver stress
- Challenging behaviors
- Home safety
- Self care
- Social support
The REACH project began with two studies that were sponsored by the National Institute on Aging and the National Institute of Nursing Research. There was a six-month intervention that was designed to ease caregiver stress with the main focus being on education, support, and skills building. The families were taught how to reduce stress, solve problems, and manage the difficult behaviors of their family members. In order to develop coping skills, role playing was used. The caregivers were also provided with a "caregiver notebook" that was written to discuss topics ranging from physical care of the person with Alzheimer's to emotional and communication issues. The benefit of this program is that it Is tailored to whatever the families need help with the most, and is made for caregivers who are highly stressed. Since about 80% of care of those with dementia is provided by a family member, these family members lack the necessary skills to deal with the troubling behaviors associated with dementia, as well as their own stress. Because of this, the family member with dementia is less likely to be able to stay at home.
If caregiving is cognitively reappraised, it can be viewed as a positive aspect of the caregivers' life. If this is viewed as an extension of a relationship that is long-lasting and reciprocal, caregivers are able to experience satisfaction in their work as well as enhanced self-esteem due to the fact that they're helping a loved one. The most beneficial part of this project for the caregiver is that their health (both physically and mentally) can be maintained. This program found that caregivers to those with Dementia felt good about themselves, useful, and needed. In turn, they could appreciate their own lives more. They developed an attitude toward life that was positive, and strengthened their relationships with others around them.
Findings from this study showed improvements in the caregivers in many areas. They reported less burden and depression, as well as having an improved emotional well-being overall. They reported gains in the areas of self care as well as healthy behaviors, social support, and management of problem behaviors that were on the part of their loved ones with Alzheimer's disease. They were able to have an hour of time that was not taken up with duties of caregiving. Plus, the cost was relatively cheap – about $5 a day/caregiver.
Benefits of caregiving
Caregiving can actually provide a health advantage as well for some caregivers. Caregivers maintained higher physical performance when compared to non-caregivers. They declined less in tasks than the low-intensity caregivers and non-caregivers such as: walking pace, grip strength, and the speed with which they could rise from a chair. Caregivers also did significantly better on memory tasks than did non-caregivers over a 2-year time frame. Caregivers scored at the level of someone 10 years younger than them, although both groups (caregivers vs. non-caregivers) were both in their eighties.
While this role brings with it high costs, high rewards are also there too. This is known as "Caregiver gain". These rewards are emotional, psychological, and spiritual such as:
- Growing confidence in one's ability
- Feelings of personal satisfaction
- Increased family closeness
Women who become caregivers are healthy enough to take on the task, therefore it makes sense that they would be stronger than their non-caregiver counterparts, and remain stronger than them. The demands of caregiving cause caregivers to move around a lot, and stay on their feet. Therefore, exercise can improve both physical health and cognition. The complex thought as required by caregiving can ward off cognitive decline. This includes activities such as:
- Monitoring medications
- Financial responsibilities
Other benefits mentioned by caregivers are that it gives their life meaning, and produces pride in their success as a caregiver. They are also able to give back to someone else. It has also been noted that psychological benefit finding can be an important way of dealing with stress. The Perceived Benefits of Caregiving scale includes 11 items with questions such as, "Has caregiving given more meaning to your life?" and "Has caregiving made you feel important?" There was an alpha coefficient of 0.7 for this scale. These benefits of caregiving have been found to be associated with improved caregiver adaptation to those who are caring for someone with dementia, end of life caregiving, and bereavement. A study done with dementia caregivers showed that finding the benefits in caregiving predicted a better response to a caregiver intervention over a time period of 12 months.
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