Caregiver Stress: The Impact of Chronic Disease on the Family

by Elissa Sonnenberg, MSEd

The 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 stresses, and the symptoms of this stress may look remarkably similar in both the person dealing with the condition and the caregiver. They 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, its prognosis, and the extent to which it impacts his or her ability to function. 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 
• Management of medications
• Financial demands of healthcare needs

For caregivers, who offer a wide range of help, both physical and emotional, stressors also vary depending 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 sustaining a life independent of caregiving

In fact, according to the Alzheimer’s Association, more than 80% of Alzheimer’s caregivers say they frequently experience stress, and many report feeling depressed as well. Also, elderly caregivers with histories of chronic illnesses of their own have a higher mortality rate than their non-caregiving peers, leading some doctors to describe 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 immediate 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 symptoms.

In every chronic condition, strong support systems benefit the afflicted person, the caregiver, and friends and family members. A study of AIDS caregivers, for example, connected strong social support with better coping skills. Plans for current and future research focus on coping mechanisms and how they differ from one set of caregivers to another as well as finding ways to support caregivers to lead healthier, better-adjusted lives.

While the caregiver typically serves as a primary support system for the chronically ill person, friends and family members can also play important roles. Whether children take on additional responsibilities around the house or friends ensure that caregivers take time off to relax, their support and encouragement—both for the caregiver and the person being cared for—helps lower the level of stress and all its associated negative consequences.

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—both emotionally and physically.

Helpful coping strategies include:

• Take breaks. Schedule quiet time, visits with a variety of friends who can offer positive reinforcement, or regular days off from routine duties that are related to illness whenever possible. When there is no other family member available to provide substitute care this advice may be exceptionally hard to follow. Public health or home health agencies may offer “respite care” or adult day care programs that can give exhausted caregivers a needed break from responsibilities.
• Take care. Eat balanced meals, get an adequate amount of sleep, and check with a physician about any nagging physical problems before additional ailments complicate the situation further.
• Understand your limits. Find local resources that can offer physical, emotional and psychological support to you as a caregiver—from counseling sessions and support groups to adult day care programs. Realize that you can’t do everything for everyone, and seek help to offset your burdens and ease stress levels from programs like The National Center on Elder Abuse.
• Getting help. Relieve feelings of isolation, anger, and frustration by seeking out the help of counseling professionals or support groups, either in person or online, to connect with others in similar situations who may be able to offer advice, support, and encouragement. 
• Ask the doctor treating your loved one to consult a palliative care team. Many hospitals have them internally. 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:

Alzheimer’s Association
http://www.alz.org

American Association of Retired Persons (AARP)
http://www.aarp.org

The American Institute of Stress
http://www.stress.org

Family Caregiver Alliance

http://www.caregiver.org

Institute for Health & Aging
http://nurseweb.ucsf.edu/iha/

National Center on Elder Abuse’s Fact Sheet on Caregiver Stress and Elder Abuse
http://www.elderabusecenter.org/pdf/family/fact_sheet.pdf

National Institute on Aging
http://www.nia.nih.gov

Well Spouse Foundation
http://www.wellspouse.org

http://www.beliefnet.com/healthandhealing/getcontent.aspx?cid=74397