concept 48 - family caregivers online

482

C O N C E P T

48 Caregiving

Sharon L. Lewis , Lyda C. Arévalo-Flechas , and Denise Miner-Williams

There are only four kinds of people in the world—those who have been caregivers, those who are currently care-givers, those who will be caregivers, and those who will need caregivers.

Rosalyn Carter

An estimated 65.7 million Americans provide unpaid care for an adult or child with functional and/or cog-nitive limitations. These dedicated caregivers pro-

vide between 80% and 90% of the long-term care provided at home. About 66% of caregivers are women and 34% are men. 1 Many caregivers of older people are also older adults. Of those caring for someone older than age 65, the average age of the caregiver is 63 years; one third of those receiving care are in fair to poor health. One third of caregivers provide care for two or more people. 1,2

The need for family caregivers will escalate dramatically in the coming years because of our aging population, increased longevity, and an overwhelmed formal health care system. People with chronic, debilitating diseases are being treated more effectively and they are living with rather than dying from these diseases. It is important for nurses to be aware of the role that caregivers have in health care delivery, the impact of this role on the lives of caregivers, and supportive interventions that can be provided to caregivers.

DEFINITION(S) Caregivers are people who care for others who cannot care for themselves. A person becomes a caregiver when he or she provides direct care for children, older adults, or people who have acute or chronic illnesses or disabilities. Nurses and other health care professionals are paid caregivers who assist in the management of a person’s illness or disability. However, the responsibility of day-to-day caregiving falls on the family. Family caregivers are sometimes called infor-mal caregivers or unpaid caregivers because they provide care without pay, usually in a home or community setting. The

focus of this concept analysis is on the family caregiver. For the purpose of this concept analysis, the defi nition of a care-giver is a lay individual (e.g., family member or signifi cant other) who provides direct care to another individual with a health-related condition (e.g., elderly person or one who has a chronic illness).

Alzheimer’s disease is the most common reason that some-one becomes a family caregiver. The incidence of Alzheimer’s disease is increasing steadily. There are now more than 5.4 million people in the United States with the disease. It is esti-mated that someone in America develops Alzheimer’s disease every 69 seconds. 3 In addition to the increasing number of people with Alzheimer’s disease, care is required for people with this disease for an extended period of time. The range of time from diagnosis until death is often from 8 to 20 years, which is why Alzheimer’s disease is often called the long, lingering death. The demands of caregiving over that long period of time can cause an incredible amount of stress for the caregiver.

SCOPE AND CATEGORIES The scope of the caregiving concept ranges on a continuum from a temporary/limited caregiving role for an individual with an acute illness or condition to a long-term or perma-nent caregiving role ( Figure 48-1 ). Caregiving roles may be shared among family members so that the caregiving role may also be episodic.

Caregivers are often categorized by their relationship to the person receiving care (care recipient). Although some caregivers may not have a familial relationship, the most com-mon types of caregivers are spousal caregivers, adult children caregivers, grandparent caregivers, and parent caregivers.

Spousal Caregivers In the United States spousal caregivers are the most com-mon family caregivers. Many of these caregivers are older themselves, and now fi nd themselves in the role of caring for

483CONCEPT 48 Caregiving

someone with physical and/or cognitive disorders. Most com-monly, family caregivers are older women who have their own chronic health problems and/or disabilities and are poor. 4

With the increase in military war casualties, there is a new population of very seriously wounded service members who require extensive care and rehabilitation. Young spouses are now becoming caregivers for their husbands or wives with multiple physical injuries, including traumatic brain injuries. In addition to the physical injuries, the emotional “wounds” related to war, combat stress, and the effects of the injuries are challenging these young families.

Spousal caregivers have to face the reality that they have lost the husband or wife that they once knew. They have “lost” their partner because of physical, mental/emotional, or cognitive disabilities, and sometimes all of these reasons.

Adult Children Caregivers Adult children are often caregivers for their elderly parents. With people living longer, adult children are more frequently assuming the role of primary caregiver for their aging parents who have multiple chronic illnesses.

The impact of the caregiving role can be overwhelming for adult children caregivers who have to assume multiple roles and responsibilities while juggling employment and family respon-sibilities. They have to change their lives to meet the needs of their parent(s). Most adult children caregivers are in the “sand-wich generation”— they are parents to their children as well as “parents” to their own parents. Commuting between their own homes and the homes of their parents can be very diffi cult. Often they ultimately end up moving their parents into their home or move themselves near or into their parents’ home to take care of them. The move may involve geographic relocation from one area of the country to another. Financial strain and consequences often accompany their caregiving role. Adult chil-dren caregivers also experience many forms of loss, including: • Loss of their parent(s) as they knew them before the illness • Loss of their jobs (or needing to cope with job changes) • Change in their social networks

It is also very stressful to realize the “loss” of their own lives. A term that can be used to characterize the adult chil-dren caregiver is role captivity —a feeling that one has unwit-tingly become captive of an unwanted role.

Grandparent Caregivers Today, many grandparents are raising their grandchildren and providing care in a variety of ways. Approximately 5.8 mil-lion grandparents live with a grandchild. More than 6.5 mil-lion children across the country live in households maintained by grandparents or other relatives. In about one third of these

homes no parents are present. 5 Most grandparents had not planned on this role because they have already raised their own children. The most common reasons that grandparents become the primary caregivers are that their own children (1) have died, (2) have abandoned the grandchildren, (3) are mentally ill or substance abusers, or (4) are in prison. Grandparents are often overwhelmed in the role of caring for their grandchildren. This feeling of being overwhelmed may occur because they are: • Raising their grandchildren on a fi xed income and facing

fi nancial hardships • Experiencing the effects associated with normal aging and/

or the health problems that make caring for their grand-children diffi cult

• Worrying about who will be the caregivers when they die or are physically unable to provide the care

• Raising children who may have mental, behavioral/emo-tional, or physical problems In addition, a more subtle stressor occurs when grandpar-

ents become primary caregivers of children. When the par-enting role is assumed, they lose the special relationship and unique role of a grandparent. However, these grandparents gladly accept the challenges, often at great personal sacrifi ces to their own physical, emotional, and fi nancial well-being. They may neglect their own health issues because the grand-children become their priority. Grandparents may also be challenged with needing legal assistance and guardianship rights for their grandchildren in order to register them in school, apply for affordable housing, qualify for special com-munity resources, and obtain medical care.

Parental Caregivers A primary role of parents is the provision of care for their chil-dren. However, parents become “caregivers” for their children when the children are at an age when they would normally be expected to care for themselves. This can be due to a disability such as severe physical limitations or mental retardation. It can also happen later in life from an accident (such as a spinal cord injury), a debilitating illness, or severe trauma experi-enced in military combat (physical and/or emotional).

Stressors of parent caregivers of children will be unique to their situations. For parent caregivers of children with life-long disabilities, stressors may include the fear of what will happen to their children when they outlive their parents. Par-ents of adult children who have experienced severe trauma or illness may suddenly be thrust into the parenting role again. Then these parents must decide how and when to relaunch their children into independence under a new context.

ATTRIBUTES Concept attributes are identifi ed characteristics that enhance a shared understanding and meaning to those discussing, observ-ing, or experiencing the concept. Stated another way, attributes are the structural elements of a concept that are consistently described or observable. Attributes of caregiving include an unpaid family member (e.g., spouses, children, grandchildren, other relatives) or friend who provides the following type of care:

Temporary/Limited DurationCaregiving Role

Long-Term/PermanentCaregiving Role

FIGURE 48-1 Scope of Caregiving Role.

484 THEME THIRTEEN HEALTH CARE DELIVERY

• Give and/or assist with activities of daily living. • Provide emotional and social support. • Manage and coordinate health care services.

THEORETICAL LINKS Lazarus and Folkman proposed a theoretical model high-lighting the concepts of stress, appraisal, and coping. Stress is defi ned as a stimulus that can serve as a positive drive or a negative event. Stressors can be acute (sudden onset or time-limited) or chronic. Prolonged caregiving is a chronic stressor. Psychologic stress is a particular relationship between the person and the environment that is appraised by the person as taxing or exceeding his or her resources and endangering his or her well-being. 6,7

Judging a situation as stressful relies on the cognitive ability of appraisal. Appraisal is the process of categorizing or evaluating a situation with respect to its signifi cance for well-being. Primary appraisal is done by a person when some of these questions are asked: Am I in trouble? Is this a good or a bad thing? Does this make me happy? Is this a challenge? Can this have positive or negative consequences? Secondary appraisal is taking place when the person asks the question: What, if anything, might and can be done? Secondary appraisal takes into account the possible coping strategies that can be used to manage a situation.

CONTEXT TO NURSING AND HEALTH CARE Caregiving, the act of assuming responsibility for another person, involves daily demands that become the caregiver experiences for the caregiver. 8 It is essential that nurses

understand the caregiving experience from the perspective of caregivers in order to provide appropriate interventions.

Caregiver Experiences and Perspectives How the caregiver deals with the experiences (stressors) asso-ciated with caregiving determines the caregiver’s response and the outcomes to the caregiving experience. Important factors infl uence how caregivers react and respond to the challenges of caregiving. One factor that infl uences their response is their perception of the experience. Another important factor affecting their response to caregiving is their ability to cope and the coping resources that they have available. Culture also affects how a caregiver will cope and perceive the caregiving experience. Caregiver outcomes can range from experienc-ing satisfaction and a sense of duty fulfi llment to becoming stressed or depressed and feeling burdened ( Figure 48-2 ).

Caregiver Experiences As caregivers assume responsibilities for another person, they experience a tremendous amount of change in their lives. Caregiving involves unique experiences that may not be what most people expected during their lifetime. The realities of caregiving can produce a negative effect on the caregiver’s physical and emotional health. On the other hand, it may be an opportunity for positive changes and rewards.

Diffi cult journey . Caregiving is challenging, and can often be viewed as a diffi cult journey, one for which most people are not prepared. In the beginning a daughter may say she will take care of mom for a few weeks, not realizing that those few weeks will extend into years. Eventually the emotional and physical tasks of caregiving can become overwhelming.

Culture

Caregiving Experiences

Caregiver Outcomes

Coping• Coping Skills• Coping Resources

Perception of Caregiving

Negative Outcomes• Stress• Depression• Burden

Positive Outcomes• Caregiver Satisfaction• Caregiver Duty Fulfillment

FIGURE 48-2 Concept of Caregiving. (Adapted from Arévalo-Flechas LC: Factors infl uencing Latino/Hispanic caregivers’ perception of the experience of caring for a relative with Alzheimer’s disease, Dissert Abstr Int, DAI-B 69/06 [UMI 3311328], 2008.)


Some common caregiver stressors are listed in Box 48-1 . Fam-ily caregivers perform an incredibly valuable service for their family member. However, they do so at a considerable cost to themselves emotionally, socially, fi nancially, and/or physically.

Uncertainties about present and future . Caregivers face uncertainties about the present and future. Caregivers simply do not know what is going to happen. For example, dementia is a roller coaster disease, with the patient’s behaviors often chang-ing daily. There can be many fl uctuations in the disease, espe-cially early in its course. Sometimes the person can seem quite cognitively intact with no noticeable indication that anything is wrong. Then there may be other days when the person is com-bative and barely able to function. Many caregivers will say that they never feel prepared to deal with the challenges of caregiving.

Inadequate understanding of the disease . Frequently care-givers have an inadequate understanding of the disease. In Alzheimer’s disease memory loss is the most widely known symptom. However, as the disease progresses there are often many changes in the person’s personality and behavior. These behavior changes are very challenging to address. The caregiver may become confused and hurt by the strange and/or diffi cult behaviors. Caregivers who do not understand the disease or manifestations of the disease may feel that there is something wrong with them (e.g., person with dementia verbally lash-ing out). This can result in caregivers feeling guilty. They may express feelings such as, “If I love her more, if I could be more patient, she would not be so combative.” However, that is not the situation. Caregivers need to understand that it is the dis-ease that is causing their loved one to act in a certain way, and the caregiver usually has no or little control over it.

Financial consequences . Caregivers often experience negative fi nancial consequences. The majority of family caregivers work full-time or part-time. Nearly 60% of those caring for an adult over the age of 50 are working, with the majority working full-time. 9 Many of these caregivers have to make adjustments in their work life to accommodate their caregiving responsibilities. They report late for work or

leave early, need to take time off because of their caregiving responsibilities (e.g., to take their loved one to physician’s appointments), reduce their hours or take a less demanding job, decline a promotion, alter work-related travel, quit their job entirely, or take an early retirement. Grandparents fi nd their retirement funds dwindle rapidly to cover the unex-pected costs of raising their children’s children.

Many older adults do not have long-term-care insurance so the fi nancial responsibilities of their care need to be paid for by the family. The caregiver may need to sell the family home to pay for health care or long-term care for the person with the disease. Many caregivers see their life savings quickly depleted.

Social isolation . When caregiving responsibilities for those with progressive illness increase and demand an increased amount of time, caregivers may become isolated and removed from family and friends. The caregiver’s world revolves around the person with the disease, and the care-giver cannot be away from the individual with the disease. For example, it may be diffi cult to transport the patient with a stroke or Parkinson’s disease. Just transferring the person from the wheelchair in and out of a car is a limiting factor in how often the caregiver takes that person out of the house.

Time commitments, fatigue, and, at times, socially inap-propriate behaviors of the patient contribute to social iso-lation. For patients with dementia the caregiver may be embarrassed to take them out in public because of the behav-iors they might exhibit. They may say or do inappropriate things such as touching children. The end result is that care-givers have limited leisure activities and their social network changes. Caregivers sacrifi ce time with family and friends, and they give up their vacations, hobbies, social life, and sense of self as their caregiving responsibilities become more intensive.

Family relationships . An illness experienced by one family member will affect the entire family and alter family inter-actions. Family relationships change when a chronic disease, especially a debilitating one, enters into the family picture. An important issue among adult children is who will care for mom or dad. Even with the best of intentions, families can struggle. Preexisting patterns in the family, such as a history of disagreements or unresolved issues, infl uence how a fam-ily responds after a person is diagnosed with a disease and requires caregiving. If problems such as poor or bad relation-ships existed before the disease, they are probably going to worsen after the diagnosis of the disease.

Many different situations exist with regard to how care is provided within a family. Some families share the responsi-bilities. Most often, primary care will fall to (or be designated to) one person with or without helpful (or often unhelpful) input from other family members. These other family mem-bers may not be willing to be involved in the care, but their comments can be very stressful to the person who has become the primary caregiver. A common situation with spousal care-givers is that they fi nd that their children do not help with the caregiving of their father or mother. Children may distance themselves because they cannot emotionally handle seeing their parent in a “sick” role. Parents may feel that their chil-dren are very busy with their own lives (career and children)

• Change in roles and relationships within family • Lack of respite or relief from caregiving responsibilities • Juggling day-to-day activities, decisions, and caregiving • Change in living conditions to accommodate family

member • Confl ict in the family related to decisions about caregiving • Lack of understanding of the time and energy needed for

caregiving • Inability to meet personal self-care needs, such as social-

ization, sleep, eating, exercise, and rest • Financial depletion of resources as a result of a caregiver’s

inability to work and the increased cost of health care • Inadequate information and/or skills related to specifi c

caregiving tasks, such as bathing, drug administration, and wound care

BOX 48-1 CAREGIVER STRESSORS

Adapted from Lewis SL, Dirksen SR, Heitkemper MM, et al : Medical-surgical nursing: assessment and management of clinical problems, ed 8, St Louis, 2011, Mosby/Elsevier.


and they cannot expect them to do anything. Spousal caregiv-ers may feel it is their responsibility and they do not want to seem overbearing or demanding of their children.

Families frequently do not communicate with each other about the needs of the patient or other important issues such as the delegation of responsibilities. Also, families frequently communicate very little about the emotions related to the issues. This results in tension, which results in stress for the caregiver.

Changing roles and relationships . The original roles of the patient can no longer be managed after the person has been diagnosed with diseases such as a severe stroke, Parkinson’s disease, or Alzheimer’s disease. Roles and relationships need to be restructured. A woman who has never managed fi nances may now need to balance the checkbook. She may also need to learn to do home and car repairs. Men who have never used a kitchen may now need to learn to cook and clean. The family patriarch may no longer be able to fulfi ll that role and the family struggles to fi nd a new leader. Grandparents may be unfamiliar with the different roles of children being raised in today’s world, which may be quite different than their past child-rearing experiences. In addition, they may experience diffi culty resolving legal issues and obtaining medical care for their grandchildren.

Perception and Coping How caregivers deal with the experiences and realities of caregiving depends on their perception of the experience and their coping abilities. Perception is the mental process of view-ing and interpreting a person’s environment. The caregiver experiences (potential stressors) are not stressful unless the individual perceives them as stressful. Events or circumstances themselves are not stressful. They only become stressful when the person perceives them as stressful. That is why what is stressful for one person may not be stressful for another.

Coping is a person’s efforts to manage stressors. Coping can be either positive or negative. Positive coping includes activities such as exercising and spending time with friends and family. Negative coping may include substance abuse and denial. Ultimately, whether coping is positive or negative depends on how well it addresses the problem. For instance, it may be good for the caregiver to have some free time and go shopping, but if this involves spending excessive money then this would become a negative coping mechanism.

Infl uence of Culture on the Caregiving Experience Culture is the conglomerate of morals, values, beliefs, norms, customs, and meanings that a group of people share and communicate from one generation to the next. Culture pro-foundly infl uences how a caregiver perceives and copes with this role. Culture permeates every aspect of the caregiving experience, from the initial demands placed on the caregiver to the fi nal perception of the overall experience and the out-comes for the caregiver. 10

The culture in which the caregiver was socialized as a young person determines how caregiving duties are assumed, managed, and perceived. People from a culture that values

individualism, competition, and independence may see the role of being a caregiver differently from people who come from collectivistic cultures in which interdependence and family take precedence over individual achievement. Although becoming a caregiver is an expectation in some cultures, caregivers in other cultures may feel captive in their role and perceive only the negative aspects of caregiving.

A value shared in some cultures (e.g., Hispanic/Latino cul-ture) is familism . This value refers to the central role of family in an individual’s life, and the individual’s reliance on fam-ily as a priority. Some cultures value familism whereas oth-ers place greater value on the individual’s independence and success. 10 The sense of duty and responsibility towards family members, especially parents, may determine whether a care-giver feels caregiving is an honor, a duty, an obligation, or a burden. The meaning attached to the caregiving experience is greatly infl uenced by cultural values. 8

Similarly, the support and resources that caregivers seek are largely determined by cultural values. The stressors in the caregiving experience are common to the vast majority of caregivers regardless of racial or ethnic background. How-ever, how the caregiver perceives the situation and whether and when resources are mobilized to cope with the demands of caregiving are infl uenced by the cultural meaning given to the situation. Support of caregivers needs to be tailored to the cultural meaning that the caregiver is giving the experience. The nurse needs to be fi rst aware of the caregiver’s view of family, health, caregiver role, and traditions. Take into con-sideration the infl uence of culture in the caregiving experi-ence if you want to incorporate the caregiver as a full partner of the health care team.

Caregiver Outcomes Caregiving can have both positive and negative outcomes. One half of caregivers of individuals living with Alzheimer’s disease or dementia surveyed found an equal balance of posi-tive and negative experiences in their caregiving. One third indicated that their caregiving experience is more positive than negative. 11

Positive caregiver outcomes . How caregivers perceive their caregiving experience may infl uence their ability to focus on the positive aspects of caregiving. Focusing on the positive aspects can create meaning for caregivers and even improve the relationships between caregivers and the per-son for whom they are providing care. Caregivers need to be assured that they are taking good care of the person that they love and keeping that person happy, comfortable, and safe. Feelings of accomplishment result when caregivers real-ize that they are able to assume another person’s role. For women this may mean managing the fi nances and the house and car repairs. For men this may involve cooking and clean-ing. For adult children caregivers they may have a feeling of satisfaction in helping their parents who provided and sacri-fi ced for them.

Another positive aspect of caregiving is the intimacy of the caregiving relationship that helps a person gain insight into another person and strengthens the bonds of that


relationship. Caregivers can live with a sense of peace that they cared for the person that they loved.

For some caregivers just thinking about the positive aspects can “reframe” their role and help it seem more manageable. Caregiving may be diffi cult for those people who were emo-tionally, physically, or sexually abused by the person for whom they are now caring. Through reframing and/or forgiveness, these caregivers may be able to come to terms with the situa-tion and fi nd positive aspects in their role of caregiver.

Negative caregiver outcomes . It is common for caregivers to become physically, emotionally, and fi nancially overwhelmed with the responsibilities and demands of caring for a family member. Caregivers often sacrifi ce their own health to care for a loved one dealing with a debilitating disease. Caregiving stress has many causes, particularly the need to provide constant supervision and handling communication and behavior prob-lems. The stress of caregiving can increase because of a perceived lack of support from family and friends and criticism from other family members. The stress of caregiving may result in emotional problems such as depression, anger, and resentment. Caregivers may reach the point in which the daily demands exceed their ability to mobilize resources and cope. Signs of caregiver stress include irritability, inability to concentrate, fatigue, and sleep-lessness. Stress can progress to burnout and result in negligence and abuse of the family member by the caregiver.

Nursing and Caregiver Support Caregiver Assessment How does a nurse know when caregivers need help? The Alzheimer’s Association has developed 10 signs of caregiver stress ( Table 48-1 ). These are indicators that if the caregiver is not helped, the person can develop more serious health problems. Caregivers are frequently unaware that they have

reached a breaking point. The fi rst step in helping family care-givers is to identify persons as caregivers—either by health care professionals or by the caregiver him/herself. Initially, caregivers may not identify with the term “caregiver.” They may only see themselves as carrying out family responsibili-ties. Helping them to understand and respect the important role that they have undertaken is a critical fi rst step to allow caregivers to accept help.

They must fi rst be identifi ed either by health care pro-fessionals or self-identifi ed. Caregivers have been referred to as “hidden patients” because a common characteristic of caregivers is primarily having concern for their loved one and personally ignoring their own needs or being ignored by health care professionals. 12,13

When you assess a patient, include an assessment of the caregiver. As a nurse, you are a key person in this process. Areas that should be assessed are presented in Box 48-2 . Lis-ten attentively to the caregivers’ stories. They provide clues as to what their lives are like, and these clues should be explored.

Identifying and Accessing Resources Caregivers who provide intense care often need outside assis-tance and have diffi culty asking for help because they do not want to be a burden on others; are afraid of being rejected if they ask for help; may be embarrassed or feel guilty for hav-ing a sick person in the family, especially when the disease has cognitive, memory, or behavior components; or believe it is their duty to be the single provider of care.

Many caregivers suffer in silence because they may not know how to ask for help or where to look for help, or they do not know that help is available for them. Nurses should encour-age caregivers to seek and accept the support of family, friends, and community resources when needed. It is important for

TABLE 48-1 SIGNS OF CAREGIVER STRESS

SIGNS DESCRIPTION WHAT THE CAREGIVER MAY SAY

1. Denial About the disease and its effect I know that Mom is going to get better. 2. Anger At the person with the disease or others If he asks me that question one more time,

I will scream. 3. Social withdrawal From friends and family that once brought pleasure I don’t care about getting together with the

neighbors anymore. 4. Anxiety About facing another day and what the future holds What happens when he needs more care than

I can provide? What happens if I’m not here to provide his care?

5. Depression Begins to break the spirit and affects the ability to cope

I don’t care anymore.

6. Exhaustion Makes it nearly impossible to complete necessary daily tasks

I’m too tired to do anything.

7. Irritability Leads to moodiness and triggers negative responses and reactions

Leave me alone!!

8. Sleeplessness Caused by a never-ending list of concerns What if she wanders out of the house, falls, and hurts herself?

9. Lack of

concentration Makes it diffi cult to perform familiar tasks I was so busy, I forgot we had an appointment.

10. Health problems Begin to take their toll both mentally and physically I can’t remember the last time that I felt good.

Adapted from the Alzheimer’s Association. Available at www . alz . org / national / documents / brochure _ caregiverstress . pdf .


caregivers to understand that exhaustion and burnout are common consequences if they attempt to do everything for themselves. Nurses can help caregivers by fi nding out what specifi c types of help they need and helping them access appro-priate resources.

Caring for the Caregiver Another way nurses can assist caregivers is to help them to understand and cope with the stressors of caregiving. You can communicate a sense of empathy to the caregiver by allowing discussion about the burdens and rewards of caregiving.

Monitor the caregiver for indications of declining health and emotional distress. A strategy to reduce stress is to help caregivers acknowledge feelings of stress and plan self-care activities. Caregiver support can be accomplished in a num-ber of ways. Discuss with the caregiver the potential that sup-port groups, networks of family and friends, and community resources have for reducing stress. 14 Support groups provide self-help by sharing experiences and information, offering understanding and acceptance, and suggesting solutions to common problems and concerns. Encourage the caregiver to seek help from the formal social support system regarding matters such as respite care, housing, health care coverage, and fi nances. Respite care, which is planned temporary care for the patient, can allow the caregiver to regain a sense of equilibrium. Respite care includes adult day care, in-home care, and assisted living services. Additionally, caregivers need to be encouraged to take care of themselves in all aspects of life, as stated next.

Physically . Eating a healthy diet at regular times, exercis-ing to help relieve stress, and obtaining adequate sleep are essential.

Emotionally . Keeping a journal can help the caregiver express feelings that may be diffi cult to express verbally. Humor is important, and its use from time to time in some situations can provide distraction and relieve stress-fi lled sit-uations. Maintenance of regular activities, interests, and hob-bies is also important to help the caregiver.

Socially . Physical contact with others provides emotional support and acknowledgment of the caregiver’s own need for comfort and assurance.

Cognitively . Encourage the caregiver to appraise his or her perception of situations and try to maintain a positive perspective.

Spiritually . Maintain a sense of awe in life. Connect with the transcendent. Encourage religious involvement if that is important to the caregiver.

INTERRELATED CONCEPTS Multiple concepts presented within this textbook are inter-related to the caregiving concept. Four concepts with partic-ularly important interrelationships include Stress, Coping, Family dynamics, and Culture. These interrelationships are presented in Figure 48-3 .

Stress Stress is the inability to cope with a perceived (real or imag-ined) threat to one’s mental, emotional, and spiritual well-being. This results in a series of physiologic responses and adaptations. 15 The emotional and physical strain is caused by a person’s response to pressure (stressors) in the environ-ment. It leads to rapid changes throughout the body affecting almost every system.

Coping Coping is the process through which a person manages the demands placed on the person-environment relationship and the emotions generated by a given situation. Lazarus and Folk-man view coping as a dynamic process specifi c to the present-ing situation and to the stage of the encounter. Coping is not merely a response to stress or tension. Coping is infl uenced by a person’s cognitive appraisal of an event and one’s cognitive appraisal subsequently infl uences emotional arousal. 6,7

Family Dynamics Caregiving can trigger many changes in family structure and family roles. Family members relate to each other in a variety of ways. Family members take part in different experiences that can affect the family as a whole. Culture infl uences a per-son’s defi nition of family and the relationships among family members.

Culture Culture is a set of behaviors, attitudes, and policies that come together in a system to enable effective work in cross-cultural. Health care services that are respectful of and responsive to the health beliefs, practices, and cultural and linguistic needs of diverse people can help affect positive health outcomes.

Assess family caregivers using the following questions: 1. What is your level of stress? 2. What are you doing to cope and how well are you coping? 3. How well do you maintain your own nutrition, rest, and

exercise? 4. What is your level of social interaction vs. social isolation? 5. How much support do you get from outside sources (e.g.,

other family members, friends, church members)? 6. How well are you taking care of your own health care

needs (especially those with chronic illnesses of their own)? 7. Are you aware and do you use community and Internet

resources (e.g., community resources, such as disease-specifi c professional organizations [e.g., Alzheimer’s Asso-ciation, American Heart Association], local adult day care centers, and Internet sites such as www . caregiver . org )?

8. Do you know about resources available for respite (some-one caring for your loved one while you have time to yourself)?

9. What kind of help or services do you think you need now and in the near future?

BOX 48-2 ASSESSMENT OF FAMILY CAREGIVERS

Adapted from Lewis SL, Dirksen SR, Heitkemper MM et al: Medical-surgical nursing: assessment and management of clinical problems, ed 8, St Louis, 2011, Mosby/Elsevier.


Caregiving CopingCulture

Family Dynamics

Stress

FIGURE 48-3 Caregiving and Interrelated Concepts.

Barbara, age 45, recently moved from Kentucky to San Antonio to take care of Melinda, her 3-year-old granddaughter. Laura, age 19, who is Barbara’s daugh-ter and Melinda’s mother, was recently sent to prison for selling drugs. Barbara, her husband Jeff, and their 17-year-old son Ben moved into a doublewide mobile home. After their move it took Jeff about 4 weeks to fi nd a job delivering supplies for a tool supply company.

Ben, who protested the move, just started his senior year in high school.

About 1 month after their move, Barbara’s parents, who live near Dallas, called Barbara to tell her that their house had sold and they wanted to move in with Barbara. Barbara’s father Steve is 85 years old and was diagnosed about 3 years ago with Alzheimer’s disease. Steve is very irritable and controlling. Barbara has spent much of her life resenting the control that her father has over the entire family. Barbara’s mother Shirley is very passive and spends much of her time reading to avoid dealing with Steve.

Living with Steve and Shirley is their youngest daughter Nancy, age 41, who had a liver transplant 3 years ago. After the liver transplant, her husband fi led for divorce and moved to Oklahoma with their children. Shortly after the divorce, Nancy had a mental breakdown from which she never recovered.

Barbara’s father with dementia, her passive mother, and her sister with both medical and emotional problems moved into Barbara’s 3-bedroom doublewide mobile home 3 months ago.

At fi rst the merged family of 7 managed to cooperate and be civil. Then Barbara found out that her father Steve had lost all of his fi nances through a scam. That left the family of 7 living on Jeff’s meager salary and Nancy’s disability checks.

Barbara spends as much time as possible in her bedroom with the door closed watching TV. She has gained about 10 pounds from eating junk food while she watches TV. Her granddaughter is allowed to roam the house as she desires. Barbara is worry-ing that Ben may be involved in drugs because of his change in attitude and appearance. Barbara is afraid to discuss any con-cerns with her husband Jeff because all of the stress is being “caused” by her family. Meals are spent in silence since every-one is afraid to make Steve angry if they say the wrong thing.

Case Analysis

Barbara is in an incredibly stressful situation. She appears to avoid dealing with the issues by watching TV or maintaining silence. In her current situation, Barbara has limited coping resources. She needs to fi nd support outside of her home envi-ronment. A fi rst step for Barbara to take would be to contact the Alzheimer’s Association so she can access local resources that may be helpful. A family meeting with an outside person as leader/mediator may help the family initiate problem-solving strategies. Finding a senior day care center for her parents would be benefi cial for both Barbara and her parents. Barbara and her husband need some respite care for the rest of the family so they can get away and renew their marriage. Melinda would benefi t from a preschool or nursery where she can interact with children her own age. Barbara should try to get involved with a caregiver support group.

MODEL CASE

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EXEMPLARS Although it is impossible to list all possible exemplars of caregiving, some common examples are presented in Box 48-3 . Many exemplars represent situations requiring temporary caregiving and others represent long-term care-giving responsibilities.

ACCESS EXEMPLAR LINKS ON

REFERENCES 1. National Alliance for Caregiving : Executive summary: caregiving

in the U.S. 2009. Available at www . caregiving . org / data / CaregivingUSAllAgesExecSum . pdf . Accessed April 18, 2011 .

2. National Family Caregiving Alliance : Fact sheet . Available at www . caregiver . org / caregiver / jsp / content _ node . jsp?nodeid=2313 . Accessed April 18, 2011 .

3. Alzheimer’s Association : 2011 Alzheimer’s disease facts and fi gures at www . alz . org / alzheimers _ disease _ facts _ and _ fi gures . asp . Accessed April 18, 2011 .

4. Shriver M: Alzheimer’s Association : Alzheimer’s in America: the Shriver report on women and Alzheimer’s , Chicago , 2011 , Simon and Shuster .

5. Generations United: Grandfacts: data, interpretation, and implications for caregivers, Washington, DC. at www2.gu.org/OURWORK/Grandfamilies.aspx. Accessed April 18, 2011.

6. Lazarus R S , Folkman S : Stress, appraisal, and coping , New York , 1984 , Springer .

7. Folkman S , Lazarus R : The relationship between coping and emotion: implications for theory and research , Soc Sci Med 26 ( 3 ) : 309 , 1988 .

8. Arévalo-Flechas L C : Factors infl uencing Latino/Hispanic care-givers’ perception of the experience of caring for a relative with Alzheimer’s disease , Dissert Abstr Int , 2008 . DAI-B 69/06 (UMI 3311328) .

9. MetLife Mature Market Institute & National Alliance for Care-giving : The MetLife caregiving cost study: productivity losses to U.S. business , 2006. Available at www . caregiving . org / data / Caregiver % 20Cost % 20Study . pdf. Accessed April 18, 2011 .

10. U.S. Department of Health and Human Services : Offi ce of Minority Health: What is cultural competency? at http: // minorityhealth . hhs . gov / templates / browse . aspx?lvl=2&lvlID=11 Accessed April 18, 2011 .

11. National Alliance for Caregiving : What made you think Mom had Alzheimer’s? at www . caregiving . org / data / NAC % 20Alzheimers0411 . pdf. Accessed April 18, 2011 .

12. Saban K L , Sherwood P R , DeVon H A , et al: Measures of psychological stress and physical health in family caregivers of stroke survivors: a literature review , J Neurosci Nurs 42 ( 3 ) : 128 , 2010 .

13. Van Vliet D , De Vugt M E , Verhey F R , et al: Impact of early onset dementia on caregivers: a review , Int J Geriatr Psychiatry 25 ( 11 ) : 1091 , 2010 .

14. Lewis S L , Miner-Williams D , Novian A , et al: A stress-busting program for family caregivers , Rehabil Nurs 34 ( 4 ) : 151 , 2009 .

15. Seaward B L : Managing stress: principles and strategies for health and well-being , ed 7 , Boston , 2011 , Jones and Bartlett .

Temporary/Limited Duration Caregiving

Acute Illness or Condition • Acute myocardial infarction • Burns • Infl uenza • Pneumonia • Surgery • Traumatic injury

Long-Term/Permanent Caregiving

Chronic Illness or Condition • Alzheimer’s disease • Cancer • Chronic kidney disease • Chronic obstructive pulmonary disease • Diabetes mellitus • Handicapped /disability • Heart failure • HIV/AIDS • Mental illness • Multiple sclerosis • Parkinson’s disease • Stroke

Social Situations • Grandparenting

BOX 48-3 EXEMPLARS OF CAREGIVING

concept 48 - family caregivers online

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