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

    image 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 growing aging population, many more people will be touched by chronic condition. Many more 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.

    Extra Burdens

    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
    • 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 medicines
    • 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 time work and time to perform professional responsibilities
    • Pressure of trying to keep up with the caregiving and still having a life outside the home
    Because it is common for caregivers to feel stressed and depressed, some doctors 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 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.
    • Ask about palliative care.—These professionals are specially trained to help treat patients who are nearing the end of there life. This can be a very difficult time for all involved in a persons care. They not only treat the person dying of the illness, but they also can provide support for family members and help you find resources in your community.
    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!

    RESOURCES

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

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

    CANADIAN RESOURCES

    Alzheimer Society of Canada http://www.alzheimer.ca/

    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 May 2012. Accessed June 12, 2012.

    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.

    Take care of you yourself. Alzheimer's Association website. Available at: http://www.alz.org/national/documents/brochure%5Fcaregiverstress.pdf. Accessed June 12, 2012.

    What is a caregiver? National Center on Elder Abuse website. Available at: http://www.ncea.aoa.gov/NCEAroot/Main%5FSite/pdf/family/fact%5Fsheet.pdf . Accessed June 12, 2012.

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