Caregiver Stress

Caregiver Stress

While there are deep rewards for caregiving, closer to the surface caregivers are exposed to a wide range of stressors, including strains on the emotional, physical, and financial aspects of their lives. We return now to the Caregiving in the U.S survey to gain a better understanding of the stressful impact of caregiving on individual lives (AARP and National Alliance for Caregiving, 2004):

  • Three factors have the greatest effect on caregivers’ emotional stress, physical strain, and financial hardship due to caregiving. They are: the level of burden, whether caregivers feel they had a choice in the decision to become caregivers, and caregivers’ reported health status.
  • More than half (57 percent) of working caregivers say they have had to go to work late, leave early, or take time off during the day to provide care.
  • Women contribute more hours of care, provided higher levels of care, and feel they have less of a choice in assuming the caregiving role than men. These factors increase women’s risk for emotional stress and a diminished quality of life
  • Of those who are level 5 caregivers, 84 percent say they have less time for friends and family; 76 percent report less time for vacations, hobbies, and social activities; and 49 percent say they are getting less exercise than before becoming a caregiver. Thirty-four percent of level 5 caregivers (who are generally older) say caregiving has made their health worse.

Physical and Emotional Stress

The chore of caregiving can exact very tangible physical and emotional aches, pains, and even illnesses. This is not surprising considering that caregivers are positioned amidst grief and loss and, depending upon the number of outside supports, may feel emotionally isolated and physically overextended in their work.

Several identified risk factors may lead to or compound the stress of caring for an adult. For example, gender plays a role. More women work while delaying childbearing, experience divorce, and becoming single parents, potentially leaving them with responsibility of caring for several generations. Caregiving can increase anxiety and distress, particularly when the responsibilities of work, marriage, child rearing, and parental caregiving collide.

The stressful aspects of caregiving most commonly cited are caring for incontinent care recipients, caring for people suffering for dementia, and giving baths. Most caregivers also yearn for additional free time. Such routine respite provided by volunteers, other family members, or professional caregivers is vital. Live-in caregivers cannot work 24 hours a day, seven days a week – the strain is just too great. Plus, feeling trapped in a house with limited social engagements demoralized caregivers.

Caregiving Across the Life Cycle, a report prepared by the National Family Caregiver’s Association (NFCA) and Fortis Long-Term Care, suggests that family caregivers often find themselves in precarious positions (NFCA, 1998). Respondents report experiencing increases in certain physical and psychological conditions after assuming caregiving duties: depression (reported by 61 percent of caregivers, a rate six times the national average), sleeplessness (51 percent), back pain (41 percent), stomach disorders (24 percent), headaches (15 percent), and colds.

Caregivers also commonly experience anxiety, feelings or helplessness, lowered morale, and both emotional and physical exhaustion. In particular, caregivers assisting older adults with Alzheimer’s disease (AD) report three times as many emotional stress symptoms as the general population. These caregivers are two to three times ore likely than a noncaregiver to take psychotropic drugs. People caring for recipients with AD are also chronically fatigued because one of the symptoms of AD is day-night reversal – patients sleep during the day and remain awake at night.

Caregivers of recipients in clear decline experience anticipatory grief. The closer the bond between caregivers and care recipients, the more stressing and fatiguing is the specter of death. Proximity to the death process may be more stressful to informal caregivers than to professionals who, by training and experience, are better prepared for dealing with death.

Financial Stress

The financial stress of caregiving can compound the problems of already burdened caregivers. The personal resources of both recipients and providers can be seriously drained by prolonged needs for care. Financial compensation for family caregivers can come from insurance or benefits such as the Aid and Attendance Allowance from the Veterans Administration. Federal Child and Dependant Care Credit provides limited tax credit. Some state programs reimburse family members for care, in a very limited fashion. Decreases in funding and increased utilization lead many agencies to direct their services toward private pay clients, making these services even less available to those with low incomes.

Cost associated with caregiving can be a hardship for many. Following is an overview of service costs:

  • Home health care – can be very expensive, but typically is more affordable than nursing home care
  • Medicare – provides limited coverage for home health care or nursing home care; regulations are tight
  • Medicaid – helps cover nursing home costs for very low-income people; home and community-based services are covered in many areas; states vary
  • Senior center programs – often free or offered on a modes fee basis
  • Home-delivered meals – low cost and sometimes free, based on the ability to pay
  • Volunteer services – friendly visitors, telephone reassurance, home repair; often free
  • Hospice care – fully covered by Medicare, if it is a Medicare-certified program and the physician has diagnosed terminal illness
  • Adult day care services – costs vary; can be free or on a sliding fee basis; some people qualify for Medicaid, states vary
  • Personal emergency response systems (PERS) – privately purchased from manufacturer; monthly service fees; local hospitals, fire departments, and rescue services sometimes lend or install these systems.

Signs of Stress

Stress appears differently in different people, but may exhibit itself in some of the ways detailed below.

  • Physical changes. Caregivers can experience changes in appetite, gastrointestinal distress, changes in frequency of urination, pounding hearts, and dry mounts. Typically, heart and repertory rates increase and muscles tighten. Humans respond to threatening situations by invoking the “flight or flight” response – they body’s internal mechanism to either stand and fight or flee from the danger.
  • Emotional changes. Caregivers can exhibit emotional instability, crying without cause, laughing inappropriately, anxiety, anger, agitation, irritability, indecision, apathy, or fatigue.
  • Behavioral signs. Caregivers may neglect responsibilities at home, with children, or on the job. Alcohol abuse or self-mediation may occur, as can neglect of personal hygiene. In general, changes in behavior, habits, and performance occur as stress mounts.

Tools to Support the Caregiver

The Caregiving in the U.S. survey provides some useful statistics on how caregivers are currently coping, finding support, and meeting their changing needs (AARP and National Alliance for Caregiving, 2004):

  • More than 8 out of 10 (84 percent) African American caregivers say they cope with caregiving stress by praying, compared to 79 percent of Hispanics, 71 percent of whites, and 50 percent of Asian caregivers.
  • About 60 percent of caregivers talk with or seek advice from friends or relatives to relieve stress, and 44 percent say they read caregiving books to do so.
  • When needing information about some aspect of caregiving, 29 percent say they would first turn to the Internet for answers, and 38 percent would seek out a doctor, nurse, or other health professional.
  • Almost half of caregivers utilize support of outside services, such as transportation, adult day care, Meals on Wheels, and respite care.
  • Caregivers’ most frequently reported unmet needs were “finding time for myself” (35 percent), “managing emotional and physical stress” (29 percent), and “balancing work and family responsibilities” (29 percent). (Level 5 caregivers report much higher rates).
  • About 30 percent of caregivers need help “keeping the person I care for safe,” and about 20 percent desired help talking to doctors and other healthy care professionals, as well as making end-of-life decisions.

Among the study’s conclusions is the powerful statement: “If we are going to protect the health and well-being of caregivers who are at risk, it is important to help them fulfill their needs so that they do not sacrifice themselves in the service of others” (p. 17).

Two of the greatest needs of caregivers are information and assistance. While caregiver’s choices can’t be controlled, there is an array of options. Caregivers need resources, both professional and volunteer, that exist in their geographical area. New parental caregivers often have many questions about their roles. How do I act? What do I say to doctors? Do I go into the doctor’s office with my parent? Do I assume responsibility for paying the care recipient’s bills? What else should I be doing for the care recipient?

Providing them with copies of the tools can get new caregivers started on the right path of developing a toolbox and knowing they do not have to struggle in isolation with this new role.

Resources for Caregiving Help

Education and support services can be located through general aging organizations, such as the Administration on Aging, or through disease-specific organizations such as the Alzheimer’s Association. Some resources to consider:

  • Home health aides
  • Housekeeping and chore services
  • Care managers
  • Financial advisors
  • Insurance managers
  • Neighbors
  • Church volunteers
  • Senior centers
  • Transportation services
  • Friendly visitors or companions
  • Telephone reassurance programs
  • Home maintenance and repair services
  • Gatekeeper or home observation programs
  • Personal emergency response systems (PERS)
  • Hospice care
  • Adult day care or night care programs
  • Delivered meals

Carol, a caregiver from New Jersey, exults about her source of assistance, a geriatric care manager: “She gives me my only peace of mind. She is my eyes and ears. She is quickly able to get whatever is needed… home health aides, consultants with specialists, and she facilitates interactions with facilities and agencies” (Beerman & Rappaport-Musson, 2002, p. 29).

Stress Relief

Caregivers must be attend to their own needs. They much recognize what causes stress and establish a plan that will mitigate the stress. Stress reduction takes place physically, emotionally, spiritually, and mentally. Caregivers need to assess how they are doing on a daily basis. Below are some strategies caregivers can use to seek balance and regain peace:

  • Pace yourself
  • Delegate responsibilities to others, especially when fatigue or stress levels are high
  • Vent feelings to friends, colleagues, or professionals
  • Keep a log or journal to get powerful emotions on paper
  • Attend classes, workshops, or conferences to obtain new information and ways to cope with stress
  • Have and follow a plan; update it as necessary
  • Participate in leisure activities such as outings to museums or lunches with friends
  • Seek wise counsel from clergy or professionals who work with older adults
  • Join a support group
  • Create a joke book
  • Compile relaxation techniques, funny stories, or a video library that can be used as diversions during moments of stress

Sometimes, redistributing burdens can sensitize other family members to a caregiver’s situation. Family meetings can be a useful tool to assess individual needs and gather some support.

The information above is reprinted from Working with Seniors: Health, Financial and Social Issues with permission from Society of Certified Senior Advisors® . Copyright © 2009. All rights reserved.