|Year : 2018 | Volume
| Issue : 2 | Page : 53-60
Specific health effects of care-giving stress and its management
Manju Dhandapani1, Sandhya Gupta2
1 NINE, PGIMER,Chandigarh, India
2 College of Nursing, AIIMS, New Delhi, India
|Date of Web Publication||9-Jul-2019|
Source of Support: None, Conflict of Interest: None
|How to cite this article:|
Dhandapani M, Gupta S. Specific health effects of care-giving stress and its management. Indian J Psy Nsg 2018;15:53-60
|How to cite this URL:|
Dhandapani M, Gupta S. Specific health effects of care-giving stress and its management. Indian J Psy Nsg [serial online] 2018 [cited 2019 Oct 20];15:53-60. Available from: http://www.ijpn.in/text.asp?2018/15/2/53/262442
| Introduction|| |
Burden has been regarded as a threat to the satisfaction of basic needs, which according to Abraham Maslow (1962), is defined as psychological needs, safety needs, belongingness and love needs, as well as esteems needs. Deprivation of basic needs constitutes a threat to one’s own well being. Caregiver stress has been exhaustively studied. Any acute, chronic or terminal illness of a family member will put some role strain in other family members, especially the primary caregiver. They pose different challenges according to the nature of disease.If the needs of the care givers are satisfied, their stress is reduced.
Care giver burden
Caregivers are words normally used to refer to unpaid relatives or friends of a disabled individual who help that individual with his or her activities of daily living.
Caregiver burden refers to a high level of stress that may be experienced by people who are caring for another person (usually a family member) with some kind of illness. A person caring for someone with a chronic illness may experience such stressors as financial strain, managing the person’s symptoms, dealing with crises, the loss of friends, or the loss of intimacy. It a lso refers to a people’s emotional response to changes and demands that occur as they give help and support to the sick person.
The stress associated with unsupported care for chronically ill family members may result in a condition commonly referred to as caregiver syndrome. In the United States today there are approximately 50 million people 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 them would require permanent placement in institutions or health care facilities at great cost to society.
Close to 80% of all long-term care is now provided at home by family caregivers to children and adults with serious conditions, including mental health issues, amyotrophic lateral sclerosis (ALS), multiple sclerosis (MS), traumatic brain injury, cancer, paralysis, developmental and physical disabilities, cognitive impairments and Alzheimer’s disease. Parents and family caregivers are the backbone of the long-term care system and save health-care insurers and governments billions of dollars annually.
When looking at caregiver burden, it is important to consider what is happening psychologically, physically, financially and socially in the life of the person who is giving care, as well as what is changing for the older person receiving the care. Are these changes causing strain for the person giving care, and if so, how much? The degree of this strain is measured and referred to as caregiver burden. There are multiple ways to help the caregivers. Nurses and other health workers have a role in identifying, assessing and managing the caregiver burden.
[TAG:2]Types of caregiver Burden[/TAG:2]
Caregivers generally experience two types of stress - primary and secondary: Primary stress is the stress felt from everyday caregiving duties, such as planning and implementing daily care for the patient, restraining the patient for safety reasons, assisting the patient with bathing and toileting,and managing difficult patient behavior such as agitation and wandering. Secondary stress comes from sources other than direct caregiving duties. Some causes of secondary caregiver stress include: caregiver conflicts with other family members, economic hardships such as lost work wages, and limitations on personal leisure and social activities.
[TAG:2]Factors influencing caregiver burden[/TAG:2]
Many factors influence the amount of caregiving burden felt.
Cognitive impairment of the client: Poulshock and Deinling (1984) found that degrees of cognitive impairment of the client influences the burden of the family members. More than 80% of Alzheimer caregivers report that they frequently experience high levels of stress, and nearly half say they experience depression.
Placement of the client: Caregivers who live with the one they care for have the highest burden scores. Caregivers living away from their patient have the lowest burden scores.
Position and role in the family: Daughters living with a patient for whom they provide care have the highest burden scores of all and wives who are caregivers, tend to have higher burden scores than caregiver husbands.
Emotional and physical factors: Angry and resentful caregivers always report feeling more burdened than those not expressing anger. Caregivers who themselves are in ill health, report higher perceived burden.
Caregiver’s attitudes toward the care recipient: Caregivers who see the patient as “emotionally demanding” or “dependent” feel a higher sense of burden than those who see the patient as “disturbed” or disabled”.,
The behaviors and attitudes expressed by the care recipient: One study found that caregiver burden is increased in 63% of caregivers when patients constantly ask the caregiver questions. Some Alzheimer patients with patient confusion, patient aggression, and finally, nighttime wandering have the need to always be physically near the caregiver.,
Wishful thinking of the caregiver: Those caregivers who experienced the highest burden were the ones who use “wishful thinking” such as believing that a miracle could happen to change the illness.,
Relationship between caregiver and recipient before illness: Jarrett found that how couples related prior to dementia diagnosis determines later perceptions of caregiver burden. Those women and men who had been very affectionate with their spouse prior to the onset of dementia experienced less burden and less feelings of depression.
Deterioration of the illness: In other kinds of caregiving situations, there can also be changes in the dependency level of the recipient due to increasing age, deterioration of illness, which would burden the caregiver emotionally and physically.,
Change in personal circumstances of the caregiver: Change in his or her health status, job position, salary etc also can influence the burden.,
Alcoholism: Long term alcoholism can cause a lot of functional disability and it is a key determinant (even more than severity of dementia) to create a high level of caregiver-burden than someone with significant cognitive impairment. ,,
Nocturnal behavioural problems of recipient: A person giving care who also has to cope with nocturnal behavioural problems of the recipient would be under far greater pressure, both physically and emotionally, than someone who is able to get a good night’s sleep. In the Canadian Study on Health and Aging, 40% of caregivers cited behavioural problems and feeling overwhelmed as reasons for placing person in an institution.,
Depression of caregiver: Caregivers who are depressed are more likely to engage in harmful acts and are more likely to be verbally abusive.,,
Holidays and special occasions: Care giver burnout can strike at any time of year. Studies show that Christmas and the holidays produce high levels of emotional stress. The Christmas season is a time of joy - a time to partake of family traditions, share memories with old friends, and celebrate the beginning of a New Year. Isolation, depression and guilt can lead to a care giver’s breakdown. 
The degree of care giver burden may be made worse by other factors such as social isolation of the care giver, poor knowledge and skill on care, poor interpersonal communication skills, lack of coping pattern, and guilty feelings over a decision to institutionalize.
Role of alcohol in care giver burden
There is considerable known about care giving and caregiver burden, but very little is known about caregiver burden and alcohol problems, or even care giver burden and alcohol related dementia. Alcohol use has a role in care giver burden in two different ways. Alcoholism also results in abnormal sleep behaviours and incontinence which is an additional burden for the care giver. In other cases, the person giving care is struggling with giving care, and alcohol use becomes one of the person’s ways to handle the care giver burden/ stress.
There are a lot of negative feelings in families that are associated with the presence of alcohol problems. =6
Symptoms of caregiver burden 1,2
The caregiver burden due to role strain may be initially manifested in the caregiver as:
- Change in appetite/ weight, sleeping, or leisure activities
- Social withdrawal, irritability, anger
- Change in overall health of the caregiver
- Fearfulness when learning new therapies or administering new medications to the disabled/ ill family member
- Loses interest in his/ her personal appearance
Specific health effects of care giving stress
Care giving stress directly affects the health of care givers. The results of stress can affect care givers in many ways.,,,
Care givers report more feelings of anxiety than non-caregivers. About one-third of all care givers report some level of anxiety. Dee Jones found anxiety much more prevalent among daughter care givers. This may occur because daughter care givers have the combined stresses of maintaining their own family and working either full or part time while trying to care for an aged parent.
Feelings of depression can become a serious problem for some care givers. Ironically, many of those caregivers with the most severe depression do not know or recognize that they are depressed. Consequently, they often do not seek medical help for their condition.
Care givers of dementia patients tend to develop diabetes, anemia, ulcers, and hypertension. In particular, alzheimer care givers are especially vulnerable to insomnia, diabetes, and hypertension. Care givers of dementia patients tend to have more bad dreams, heart palpations, headaches, and excessive perspiration than non-caregivers. Females seem especially prone to these symptoms. About 12% of caregivers become physically ill or injured as a result of care giving.
Care giving affects sleep patterns. Care givers sleep a bit less than non-caregivers. In one study , care givers reported 22.4 hours of sleep every three days. Non-caregivers reported about 23.7 hours of sleep every three days. Although the number of hours spent sleeping is not dramatically different between caregivers and non-caregivers, the quality of sleep may be less for caregivers. Caregivers use relaxant and sleep-inducing drugs more often than non-caregivers. Drug-induced sleep is not as nourishing to the body as sleep that comes naturally.
Weight gain: Some female caregivers are prone to weight gain. A major study finds that women who care for alzheimer patients tend to gain weight, but only if they are unable to control their anger. Women caregivers who find effective ways to control their anger do not gain weight.
Diabetes can be aggravated by the stress of caregiving. During periods of stress, especially in diabetics, high levels of insulin are present in the bloodstream. Insulin normally binds to cells and increases the entry of sugar inside cells where it is used for fuel. Thus, insulin that floats in the bloodstream during stress is less efficient. Female alzheimer care givers who report both a high amount of care giving burden and who feel anger and hostility have higher insulin levels in their bloodstream.
Wound healing is affected by the stress of care giving. One study found that wounds, such as cuts, take 24% longer to heal in alzheimer caregivers than in non-caregivers.
The immune system is weakened by care giver stress. Stress can lower the activity of natural killer cells. Studies also show that alzheimer care givers have lower natural killer cell activity. Consequently, care givers are more prone to colds and infections because of deficient immune responses. Care givers who have more social contacts seem to have more efficient immune system functioning . Thus, it is important for care givers to maintain family and friends and talk problems out in a support group, in order to maintain optimum immune system functioning.
When caregivers are asked to rate to what degree the stress of caregiving has affected their health, close to 25% report that their health has suffered in some way as a result of their caregiving role. Caregivers spend less time in doctors’ offices than non-caregivers. Data from the National Center for Health Statistics shows that caregivers make average 4 doctor visits per year, while non-caregivers average make 7 doctor visits per year. Male and female caregivers report about the same number of doctor visits yearly.
Without adequate preparation and support from nurses and health care providers, caregiving puts the family at risk for serious problems including a decline in the health of the caregiver and that of care-recipient.
Negative effects of caregiving stress
Many caregivers tend to develop negative health behaviors, such as smoking, alcoholism, lack of exercise, and overeating. One study looked at exercise patterns of caregivers., Only 41% of caregivers perform vigorous aerobic exercise weekly, compared to 65% of non-caregivers. Caregivers also tend to limit their exercise sessions to a shorter amount of time per session. Caregivers average 1.4 hours of exercise each week as compared to non-caregivers who average 3.6 hours of exercise each week.
Caregivers tend to drink alcohol more often than non-caregivers. They also tend to use more psychotropic drugs such as those that induce sleep or relaxation. About 30% of caregivers use psychotropic drugs, compared to 20% of non-caregivers. Combining relaxant drugs with alcohol is dangerous to the health and should be avoided.
Effect of caregiver burden on family
Family caregiving is an interactive process that occurs within the context of the relationship among members. Whenever an individual becomes dependent on another family member for care and assistance, there is significant stress affecting both the caregiver and the care recipient. In addition, the caregiver needs to continue to meet the demands of his or her usual lifestyle. Family members as caregivers are often spouses who are older adults themselves or adult children trying to work fulltime, care for aging parents, and launch teenagers successfully. Steven Zarit et al have studied the effect of care giving on the family and reported decreased social activities of the care givers and disruption of their relations with other family members.
The caregiving experience often affects the activities of the family. Dee Jones studied how caregiving changes the family. More than 16% of caregivers say that caregiving has definitely impacted family integrity. Many daughters reported that they were unable to go out in the evening with their husbands because they were caring for a demented parent. Many daughters resented the lack of privacy brought about by the care of a demented parent
Caregiver burden on Social life
Caregiving also places limits on the caregiver’s social life. More than 60% of caregivers say that socializing and participating in hobbies are curtailed by caregiving. Caregivers living with an Alzheimer patient have an even more restricted social life than those who do not live with the patient. For example, spouses who take care of an Alzheimer patient report that they have fewer visits from friends and family, spend less time chatting on the telephone, spend less time in their house of worship, spend less time with their hobbies, and vacations often suffer for caregivers as well,
Caregivers also suffer disruption of their employment. More than 11% of caregivers quit their jobs to care for a parent at home. Hours worked are reduced by 3%. Time off from work is required by 8% of caregivers to perform caregiving tasks.
Management of caregiver burden
Caregivers reduce caregiver stress and burden in varied ways. One study found that how caregivers view a stressor may help to modify the amount of burden felt. Some caregivers reduce their burden by “trying to make sense of the illness” by relying on religious or philosophical beliefs.
But there are also protective factors that help reduce the likelihood of caregiver burden.,,, These include:
- Obtaining help from other family members
- Use problem-focused coping strategies
- Utilization of available support and resources from the community
- Knowledge about the alcohol condition and why the alcohol use might cause the person to think or behave in certain ways and the skills needed to cope with these problems
- Explaining the symptoms of the burden to all members of the family involved in caregiving, so that the burden can be shared identified and reduced.
- Identifying the manifestations of caregiver burden in the caregiver, especially signs of caregiver role strain may intensify if the loved one’s health status changes or when institutional care is considered.
- Helping family members set up alternating schedules to give primary caregiver rest
- Helping family members design schedule or other methods to provide groceries, meals and housekeeping for the caregiver and client.
- Identifying community resources for transportation, respite care, and support groups.
- Offering an opportunity to ask questions, and when possible provide phone number for questions and assistance
- Providing family members with the caregiver’s health care provider’s contact information and instruct them to call if the caregiver has health problems, the caregiver seems overly exhausted, or they observe changes in caregivers interaction and normal activities.
- Utilizing respite care. Respite provides the much needed temporary break from the often exhausting challenges faced by the family caregiver. Respite is the service most often requested by family caregivers, yet it is in critically short supply, inaccessible, or unaffordable regardless of the age or disability of the individual needing assistance. While the focus has been on making sure families have the option of providing care at home. 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.
- Become familiar with the range of health care professionals who handle the problems such as geriatricians, home health aides, and social workers.
- Identifying community and professional resources and support systems, including assistive or shared housing, adult day care, respite, hospice care, care management, and financial planners.
- Using the Internet, support groups, or books and articles, familiarize with the range of international services and information available about medical conditions, social services, financial aid, and legal and housing options.
- Humor seems to help lighten the burden for caregivers when these stressors occur.
Caregiving Support Modalities23
Traditional Family and Cultural Supports: Family bonds are essential to the wellness of all concerned, and are the first line of defence in the battle against loneliness and frustration. Even though outside help may be needed with long-term care, a flexible family norm and the help from the family members place an important role in making the caregiving as a part of life and improving the quality of life of caregivers. The culture place an important role when it gives due vale in taking care of sick and elderly in the family.
Support Groups: People increasingly turn in their grief and anxiety to groups grown out of immediacy despite cultural differences. In the past twenty years, self-help has flourished as people search for connection and resolution, where they can share similar stories, fears and hopes. Today, sponsored by hospitals, social service agencies, and health associations, there are groups for most medical conditions. When strangers reach out to strangers, they create family. They may not be able to provide direct acre to the members, but they help to choose the appropriate solutions of the problems. Caregivers actually rely less on health care professionals for coping strategies than on informal networks, including religious congregations.
Professional Support: In response to a mushrooming demand for pragmatic family supports, there has been prodigious growth of adult day care, hospice, elder law, assisted-living housing, care management counselling, workplace elder care benefits, and home health care. There are also psychiatric social workers, dietitians, podiatrists, continence advisers, physical therapists, and wound nurses who commonly interact with caregivers. So when family reinforcements aren’t available, the professionals provide surrogate support.
Day Care and Care Management: Adult day care centers are becoming one of the most popular forms of support for caregiving families. They offer health and therapeutic services and social activities for people with functional or cognitive impairments and keep many elders living in the community instead of being institutionalized. The staff reinforces clients’ dignity. They make them feel they’re still a part of society.
One of a new breed of aging network professionals is the care manager, usually a social worker or nurse who helps a family make and monitor a flexible plan of care. For a fee of $65 to $350 for the initial assessment—then subsequent hourly rates ranging from $30 to $150 depending on duties, credentials, and geographic location—professionals provide a range of services including in-home geriatric assessment, financial management, arranging for in-home care or long-term placement, and developing and monitoring a care schedule.
The Internet: One of the newest forms of social support is the World Wide Web, which has turned the Internet into virtual communities and allows family caregivers to find companionship at all hours, a link to sanity through bulletin board forums, e-mail lists, databases, and live chats. People seek information for medical concerns, local resources, and services. The Net allows people to take charge of their lives and then extend a hand to others.
Psychotherapy: Psychological support is an important aspect of dealing with caregiver burden. psychotherapy is an adjunct to conventional medicine; the mind/body connection is the cornerstone of the program, which emphasizes both psychological and social support.
Use of Alternative Medicine: Alternative medicine, supplements conventional medicine, where patients are passive recipients, with corollary practices where they take responsibility for their health to boost the immune system, to relieve stress and chronic pain, and to reduce blood pressure and it concentrates on healing rather than curing.
Treatment avenues include massage therapy and deep tissue body work, acupuncture and Chinese medicine, vitamins and herbs, vegetarianism, aromatherapy, yoga and meditation, stress reduction, biofeedback, and visualization to reduce the burden and improve the quality of life.
Energy Medicine: Energy medicine, a holistic practice suggests that human beings are energetic vibrational fields beyond the five sense and it uses techniques to create positive energy in the individuals. The patients as well as their care givers use this modality to direct their negative energy towards positive energy to enhance their physical and psychological well being.
Meditation & Exercise: Quieting the mind to a stillness that reflects the individual’s essential nature is the goal of meditation. This focused awareness illuminates the turbulence and suffering created by thoughts. It is a method of calming both mind and heart so that compassion, rather than fear, can reign. Regular exercise helps to reduce stress. Caregivers who exercise regularly have less depression, less anxiety, less anger, less perceived stress, and generally have lower blood pressure than caregivers who do not exercise.
Use of coping strategies 1,23-4
Acceptance: Coping begins with accepting the reality that life for both the care recipient and caregiver is inevitably going to change. In order to move forward in a positive way, the caregiver must fully understand about the health of the care recipient. Accepting that sick and elders are often struggling with self-defeating thoughts such as loss of independence and medical problems, can help caregivers better see the need for compassionate care.
Planning and Open Communication: Planning ahead is a key component in the coping process. Balancing lifestyles requires both careful organization and cooperation. Care recipient should be fully involved in the decision making process unless they are severely incapacitated to do so due to medical reasons. Open communication is needed with the recipient regarding their current medical state, the medications they are taking, if they have extended health insurance, details surrounding their current doctors and specialists, where they wish to live, and any legal documentation etc.
Keeping the Caregiver Healthy: The decision to provide primary care to sick and elderly can be a life altering experience. Caregivers should seek support from their family and friends by keeping the lines of communication open. Finding ways to keep sick and elders involved in community programs is also a great way that caregiver can find more time to spend with their kids. Keeping healthy should also involve a healthy eating plan, daily exercise and proper amounts of sleep.
Keeping a Positive Attitude: Caregiver should maintain a positive attitude throughout the journey. Caring for loved ones or elderly parents doesn’t have to be a negative experience. It can also have a profound impact on caregiver and nurturing in them the qualities of empathy and compassion towards sick and elders. Remembering that aging is a natural life event can provide strength during the difficult times. Caregivers can gain an overwhelming sense of peace and pride in their efforts by knowing that their sacrifice provided their elderly parents with respectful and dignified care.
Nurse’s Role in Helping Caregiver
Despite its demands, caregiving is a positive and rewarding experience. The interpersonal dynamics between the family members influence the ultimate quality of caregiving. Thus the nurse plays a key role in helping family members develop better communication and problem solving skills to build up relationship needed for caregiving to be successful. There are certain measures to reduce the caregiver burden.,,,
- Assess for caregivers stress, such as tension in relationships with family and care recipient, changes in level of health, changes in mood, anxiety and depression
- Help the caregiver to self asses how much stress she or he is under
- Helping to reduce social isolation for one or both of them may be by getting the care receiver out of the house to a weekly support group or to “adult day care” for moderately impaired people with dementia
- Provide the person giving care and others in the family with information about alcohol and aging, particularly as it relates to the specific problems the person is identifying
- Help the person giving assistance to better understand and reinterpret the behaviour that is causing them stress, not necessarily blaming everything on the alcohol or cognitive behavioural strategies
- Help the caregiver to establish personal boundaries and develop reasonable expectations of the care receiver, and of him or herself
- Assess the family for additional caregivers to provide respite care for older adult family members and determine additional roles for the family members
- Identify family members, friends, and neighbours who will take time to socialize with the caregiver to avoid caregivers isolated feelings
- Utilize other community or social resources so the person giving care has time for self
- Utilize other supports from family or others who may have a better relationship with the older person
Role of Other Relatives in for Reducing Caregivers’ Stress
A primary caregiver is usually too caught up and lack time to celebrate the family get together and holidays. She feels guilty for not upholding family traditions like baking cookies and decorating the house. Relatives should understand her situation and should have proper communication regarding the visiting plan and make sure that it will not disturb her activities. Avoid criticizing the caregiver’s home which may be untidy or may have some fault.,, Relatives can help the caregiver in dusting, washing dishes and other activities while spending time with them. Do whatever works best with the least amount of work for the caregiver.
Offer respite time to the caregiver. A few hours of valuable respite time allow the primary caregiver a chance to do whatever she wants to go shopping, catch up with a friend, get her hair done, go for a jog or even take a long luxurious bath. Relatives who live close by should note that respite is a gift of time that’s welcome any time of year. Ask if there are any duties another family member could do to alleviate some of the caregiver’s work. Ask if the caregiver or the elderly person needs anything. The less isolated a caregiver feels, the less chance there is of her burning out. Treat her to things she loves - music, a favorite movie on DVD, a book she’s been dying to buy but doesn’t have the money for, or some other treasure. Surprise her during the year with tokens of appreciation for the work she’s doing.
Relatives can help a caregiver avoid holiday burnout and depression by following guidelines for visiting and gift-giving. Family members can show understanding for the difficult job a caregiver has by being sensitive to her needs.
If the relationship between care giver and care recipient is not a supportive one, community services are often a resource for both the client and family. Use of community resources includes locating a service required by the family or providing respite care so that the family caregiver has time away from the care recipient. Examples of services that are beneficial to families include caregiver support groups, housing and transportation services, food and nutrition services, housecleaning, legal and financial services, home care, hospice, and mental health resources. Before referring a family to a community resource, it is critical that the nurse understands the family’s dynamics and knows whether the family wants support.,
Often a family caregiver may resist help, feeling obliged to be the sole source of support to the care recipient. A nurse should be sensitive to family relationships, and help caregivers understand the normalcy of caregiving demands.
Caregiver Empowerment Model is used by many organizations in appraising caregiving demands as a challenge, finding meaning, and using certain types of coping strategies are posited to be associated with growth and well-being.
Resources for Enhancing Alzheimer’s Caregiver Health (REACH) proven that behavioral intervention for dementia caregivers significantly decreased burden, depression, impact of depression on daily life, caregiving frustrations, and number of troubling dementia-related behaviors.
This study shows the importance of screening caregivers for psychological as well as physical symptoms and disorders. An awareness of burden of terminal cancer caregivers could lead to timely proactive preventive interventions on their physical and mental health, to decrease negative outcomes. Caregiver burden is an aspect which is neglected many times. Nurses should understand importance of caregiver burden and assess and plan interventions while they are taking care of the patients. It is an aspect which is missed in nursing curriculum, but has to be included and given due importance. Care giver burden is an area which is studied by many researchers, but still lacking valid evidences for practice.
| Conclusion|| |
Family caregivers are the frontline providers of most of the day-to-day care for many chronic patients and elderly, yet they are usually untrained and unprepared as they struggle to adjust to new roles and responsibilities. Because the focus is on the patient, the emotional aspects of caregiving often go unnoticed and unsupported. Given the appropriate resources, caregivers are able to acquire the skills and knowledge necessary to effectively care for their loved ones within the context of the home while maintaining rich and rewarding personal relationships.
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