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Caregiver Stress: The Impact of Chronic Disease on the Family
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Caregiver Stress: The Impact of Chronic Disease on the Family

imageThe Institute for Health & Aging reports that virtually one half of the US population suffers from a chronic condition—defined as a problem that lasts for a long time or one that will never go away, such as Parkinson’s disease , AIDS , cancer, or Alzheimer’s disease . This includes a growing aging population, many of whom need assistance with routine aspects of everyday life.

The responsibilities of caregiving, added to the routine pressures of maintaining a family and professional life, can naturally lead to stress. Stress, in turn, creates a ripple effect on the health and well-being of not only the caregiver, but everyone from family members to friends and co-workers.

Bearing Extra Burdens

Living with a chronic illness—and caring for a person with a chronic illness—can lead to physical and emotional stress. The symptoms of this stress may look similar in both the person dealing with the condition and the caregiver. The symptoms include:

  • Anger, sometimes leading to physical violence
  • Anxiety
  • Denial
  • Depression
  • Dissatisfaction with life
  • Exhaustion
  • Guilt
  • Irritability
  • Stress-related physical conditions

For the person with the chronic condition, the level and type of stress may vary depending on the specific illness and its prognosis. Common causes of physical and emotional stress include:

  • Changes in ability to work
  • Changes in personal and professional relationships
  • Physical changes and side effects
  • Management of symptoms and medications
  • Financial demands of healthcare needs

For caregivers who offer a wide range of help, stressors also depend on the intensity of their involvement and their relationship to the person in need. These stressors often include:

  • Extra demands on time and energy
  • Changes in family roles and responsibilities
  • Changes in ability to perform work and professional responsibilities
  • Pressure of trying to keep up with the caregiving and still having a life outside the home

In fact, according to the Alzheimer’s Association, many caregivers say they experience stress and feel depressed. Also, if the elderly caregivers have a chronic illness, they have a higher mortality rate to compared to peers who aren't caregivers. This leads some doctors to refer to caregivers as "hidden patients."

Adapted Lives

Because of the levels and types of stress involved, the impact of chronic illness can extend far beyond the sufferers and their caregivers. Nearly always, it affects the household of the person with the chronic condition. And as those household members are affected, the people who love, care for, and work with them can experience effects as well. A recent study of grown children with chronically ill parents revealed that even non-caregiver children showed an increased risk of depression.

In every chronic condition, strong support systems benefit everyone. A study of AIDS caregivers, for example, connected strong social support with better coping skills. Plans for research include looking at the coping mechanisms that caregivers use and finding better ways to support caregivers.

While the caregiver typically serves as a primary support system for the chronically ill person, friends and family members can also play important roles. This can be children taking on more responsibilities or friends ensuring that caregivers take time off to relax. These steps help lower the stress level.

Signs and Solutions

Because of the relentless demands associated with chronic illness, understanding positive methods of coping can greatly benefit everyone affected by the condition.

Helpful coping strategies include:

  • Take breaks. Schedule quiet time, visit with friends who can offer positive reinforcement, or take regular days off from routine. Home health agencies may offer “respite care” or adult day care programs that can give you a break.
  • Take care. Eat balanced meals, get an adequate amount of sleep, and check with a doctor about any continuing problems.
  • Understand your limits. Find local resources that can offer physical, emotional, and psychological support to you as a caregiver. Realize that you can’t do everything for everyone. Find out if your state offers helpful programs.
  • Getting help. Relieve feelings of isolation, anger, and frustration by seeking out the help of counselors or support groups.
  • Ask about palliative care. These professionals are specially trained to treat symptoms of chronic illnesses. They can also provide support for family members and help you find resources in your community.

RESOURCES:

Children of Aging Parents
http://www.caps4caregivers.org/

Family Caregiver Alliance
http://www.caregiver.org

CANADIAN RESOURCES:

Alzheimer Society
http://www.alzheimer.ca/english/care/caregivers-intro.htm

Canadian Caregiver Coalition
http://www.ccc-ccan.ca/

References:

Amirkhanyan AA, Wolf DA. Caregiver stress and noncaregiver stress: exploring the pathways of psychiatric morbidity. The Gerontologist 2003;43:817-827.

Bakas T, Burgener SC. Predictors of emotional distress, general health, and caregiving outcomes in family caregivers of stroke survivors. Top Stroke Rehabilitation. 2003;9:34-35.

Caregiver stress. American Academy of Family Physicians. Available at: http://familydoctor.org/x2314.xml. Updated December 2006. Accessed February 1, 2004.

A fact sheet on caregiver stress and elder abuse. National Center on Elder Abuse website. Available at: http://www.ncea.aoa.gov/NCEAroot/Main_Site/pdf/family/fact_sheet.pdf. Accessed June 17, 2008.

McCausland J, Pakenham KI. Investigation of the benefits of HIV/AIDS caregiving and relations among caregiving adjustment, benefit finding, and stress and coping variables. AIDS Care. 2003;15:853-869.

Raina P, O’Donnell M, Schwellnus H, et al. Caregiving process and caregiver burden: conceptual models to guide research and practice. BMC Pediatrics. 2004;4:1.



Last reviewed May 2008 by Ryan Estévez, MD, PhD, MPH

Please be aware that this information is provided to supplement the care provided by your physician. It is neither intended nor implied to be a substitute for professional medical advice. CALL YOUR HEALTHCARE PROVIDER IMMEDIATELY IF YOU THINK YOU MAY HAVE A MEDICAL EMERGENCY. Always seek the advice of your physician or other qualified health provider prior to starting any new treatment or with any questions you may have regarding a medical condition.


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