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Caregivers suffer as much as the ailing Person

24 Mar 2015

Are you the person who takes care day after day of an ailing family member? Are you the sole care giver at home? Or having difficulty in playing a role of caregiver? Have you isolated yourself from potential helpers? Have you lost contact with people on social front? If yes then you are running a risk of isolating yourself and increasing burnout. This article would help you to understand about different aspects of caregiver burnout.

An increasing number of individuals are finding themselves taking care of someone who is aging, disabled, seriously ill or having psychiatry illness.

More than 34 million unpaid caregivers provide care to someone age 18 and older who is ill or has a disability (AARP, 2008). A caregiver is defined as a family member who has been living with the person who has physical, psychological or developmental needs and has been closely involved in his/her activities of daily living (U.S. Department of Health and Human Services, 2001). The majority (83%) are family caregivers—unpaid persons such as family members, friends, and neighbors of all ages who are providing care for a relative (FCA, 2005)

Initially, most caregivers accept their role as caregiver with a sense of idealism, hope and eagerness to do well. With time fatigue may set in disappointments and frustrations can and does occur thus leading to burnout and further contributing to physical and psychiatric morbidity. According to a study, half (53%) of caregivers reported that their health had gotten worse due to care giving and the decline in their health has affected their ability to provide care (NAC, 2006).

Caregiver burnout is a physical, emotional and mental exhaustion which may be accompanied by change in attitude, from positive and caring to negative and unconcerned or a sense of being completely overwhelmed and unrewarded (Carter, 1994). Caregivers report having difficulty finding time for one’s self (35%), managing emotional and physical stress (29%), and balancing work and family responsibilities (29%) (NAC, 2004).

Caregiver burnout is generally result of:

  •   High expectations of self
  •   Difficulty in saying “No”
  •   Blaming oneself for everything
  •   Considering oneself as the only capable person for           providing care and help
  •  A strong urge to make things ideal for the person you are  caring for


Signs and symptoms of caregiver burnout

  •  Biological changes involving change in sleep pattern or decrease in sleep, difficulty falling asleep, and appetite changes involving either eating too much or too little.
  •  Frequent change in mood or mood fluctuations
  •  Feeling of hopelessness, helplessness, worthlessness, sadness of mood
  •  Feeling of alienation, lack of energy, losing interest in activities previously enjoyed
  • Neglect or indifferent treatment towards the person you are caring for
  •  Missing appointments, difficulty concentrating
  • Increase usage of medications, sleep pills and alcohol or tobacco
  • Withdrawing from friends, relatives or loved ones
  • Getting sick more often
  • Being irritable and becoming emotionally and physically exhausted

A Case describing Caregiver burnout

Mrs Smita who has been taking care of her husband suffering from depression from last one year reported that initially she was full of enthusiasm and confidence to be in a position of caregiver. Recently she has observed decline in her health, she is emotionally and physically exhausted. Overwhelmed and with little support both physically and mentally, she remembers feeling torn between continuing her husband’s care at home and taking care of all other household work involving taking care of her children and as she was the sole bread earner of the house from past few months. Mrs Smita felt devalued as a provider, instead of expressing how she felt; she misplaced these emotions on those around her, trying to solve the challenges herself. The emotional burdens and limitations on daily life influence the decision to stop care, where the lack of timeout had been a key contributor. She reported that she has no social life and has stress related health issues and has put her life on hold in order to care for her husband. Thus, it further complicated by anxiety and guilt derived from a deep-seated commitment to the dependent and fear of being judged by family. It was important to guide her in decision making that would enable her to rest, it was important that decisions should come up from her. Helping to accept her situation, releasing guilt and acknowledging the support she needed for herself. 

Primary Caregivers & its Impact

Family members are found to play the role of primary caregivers who provide more than 80% of the long-term care for the 20-25% of elders or individuals who are functionally disabled (Day, 1985; Stone et al., 1987). The capacity to provide care has many meanings including, geographical availability of caregivers, economic feasibility, and flexibility in life-style patterns, availability of other social supports or services, and individual responses to the stresses and accommodations of family care can affect the capacity of families to provide care for a family member.

Many people care for a family member or friend with a long-term health condition, disability or aging-related problem. Even though this caregiving is generally considered beneficial because of the savings achieved and the well-being of the care recipients, taking on such responsibilities can have consequences for caregivers. In particular, those who care for their child or spouse are more likely than others to be experiencing difficulties as a result of their tasks.

In addition, they are more likely, because of their caregiving responsibilities, to experience psychological consequences, health effects, pressures on their personal finances and possible consequences in their career. Although they are more numerous, caregivers of older parents may be less burdened on average, but many of them still experience psychological consequences resulting from caregiving.

There is a dearth of information on burden among caregivers of patients with physical and mental illness in developed and developing countries, especially in community based settings. It is crucial for health professionals to be sensitive to the stress and burden experienced by families, in order to plan and implement a comprehensive treatment programme. This would also facilitate enhancing the quality of life of both, the ill, and their families.


Types of Caregiver Burden

  • Subjective/ Internal Burden: refers to psychological consequences on the family. Including,
  • Relative personal appraisal of the situation, and its perceived severity
  •  Extreme emotional distress including distress related to relationship between the caregiver and care recipient  
  • Fear, sadness, anger, guilt, loss, rejection
  • Depression
  • Anxiety
  • Objective/External Burden: refers to outwardly measurable demands placed on family members. Including,
  • Financial and employment difficulties
  • Strain on interpersonal relationships
  •  Social isolation
  •  Physical violence
  • Routine disruptions of caregivers and in households of relatives
  • Decrease in leisure time
  • Difficulties with neighbors

Consequences of Caregiver Burnout

Caregivers frequently suffer from depression, exhibit maladaptive coping strategies and express concern about their poor quality of life (Serrano-Aguilar et al. 2006). Thirty-two percent of caregivers reported 6 or more symptoms of depression and were classified as depressed (Covinsky et al. 2003). Approximately 12 million women experience clinical depression each year, at approximately twice the rate of men. Higher physical and psychological symptoms are reported and frequent use of prescription medications and health care services are reported (Brodary & Green, 2002). According to Schulz & Beach (1999), primary care giving role, mediated by caregiver burden is an independent risk factor for increasing mortality rate by 63%.

  • Detrimental consequences on physical health, leading to disability and stress related health problems including impaired immune system function, migraines, arthritis, cardiac and back problems
  • Decrease in quality of verbal communication
  • Decrease in interpersonal relationship
  • Lack of social life

How to Prevent Caregiver Burnout

  • Set realistic goals, accept that you may need help with caregiving, and turn to others for help with some tasks.
  • Set aside time for yourself, at least for an hour or two. Remember, it is an absolute necessity for caregivers.
  • Talk to a professional. Most therapists, counselors, and other professionals are trained to counsel individuals dealing with a wide range of physical and emotional issues.
  • Know your limits and take a reality check of your personal situation. Recognize and accept your potential for caregiver burnout.
  • Set small, achievable goals for yourself and your caregiving.
  • Educate yourself. The more you know about the illness, the more effective you will be in caring for the person with the illness

There is a significant level of burden and psychological distress experienced by caregivers throughout the world. It is recommended that effectively planned interventions should target at this burden and at improving the ability of caregivers to cope, within the physical and mental health service delivery system.

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