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Caregiver Stress: The Impact of Chronic Disease on the Family
A chronic condition is 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. With the growth of our aging population, many more people will be touched by chronic conditions. Many will 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.
Living with a chronic condition—and caring for a person with a chronic condition—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
- Dissatisfaction with life
- Stress-related physical conditions, such as gastrointestinal problems or insomnia
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 or do recreational activities
- 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 work time and time to perform professional responsibilities
- Pressure of trying to keep up with the caregiving and still having a life outside of work and the home
Because it is common for caregivers to feel stressed and depressed, some doctors refer to caregivers as hidden patients.
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 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. Researchers are looking into the coping mechanisms that caregivers use and searching for 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.
Steps to Care for Yourself
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 cannot 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 group.
- Plan ahead—Take advantage of professionals who can help you get ready for legal, financial, or long-term health issues before you need them. Accept that your loved one's status may change and you may not be able to help any further. If necessary, seek guidance for end of life issues.
The most important point to remember is that you do not need to go through this alone. There are resources available to help you and your loved one. Reach out and contract someone for the support that you deserve.
Family Caregiver Alliance
US Department of Health and Human Services Administration on Aging
Alzheimer Society of Canada
Canadian Caregiver Coalition
Alzheimer dementia. EBSCO DynaMed website. Available at: http://www.ebscohost.com/dynamed. Updated October 29, 2015. Accessed January 25, 2016.
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Bakas T, Burgener SC. Predictors of emotional distress, general health, and caregiving outcomes in family caregivers of stroke survivors. Top Stroke Rehabilitation. 2003;9(1):34-35.
Caregiver health and wellness. American Academy of Family Physicians Family Doctor website. Available at: http://familydoctor.org/familydoctor/en/seniors/caregiving/caregiver-health-and-wellness.html. Updated April 2012. Accessed January 25, 2016.
Caregiver stress. American Academy of Family Physicians Family Doctor website. Available at: http://familydoctor.org/familydoctor/en/seniors/caregiving/caregiver-stress.html. Updated February 2012. Accessed January 25, 2016.
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(6):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.
Take care of you yourself. Alzheimer's Association website. Available at: http://www.alz.org/national/documents/brochure%5Fcaregiverstress.pdf. Updated 2015. Accessed January 25, 2016.
- Reviewer: Michael Woods, MD
- Review Date: 01/2016
- Update Date: 01/25/2016