Celebrating the Family Caregiver:

Advice from Clinicians Across the Country

By Kevin Henning, M.D.
Chief Medical Director

Approximately 4.5 million Americans suffer from Alzheimer’s disease[1], a condition that also brings a unique set of challenges to family caregivers. While these family caregivers are working tirelessly to ensure medications are being taken on time, meals are being eaten, doctor appointments are kept, care plans are being executed and medical equipment is working correctly, they are also faced with the emotional toll that comes with caring for a loved one suffering from Alzheimer’s.

As Alzheimer’s progresses patients can experience symptoms such as impaired thinking and long-term memory loss, disorientation and confusion, trouble performing familiar tasks and changes in personality and behavior, among others[2]. Some patients also experience “sundowning,” or sundown syndrome, a period of increased confusion, agitation and restlessness as the sun goes down (sometimes lasting into the night) which can cause wandering, yelling and combativeness[3]. These behavioral disturbances can also happen during daylight hours. The symptoms often lead to a sense of loss of control and cause significant stress to family caregivers.

The physical, financial and emotional strain of caring for a loved one can quickly become overwhelming and can also start to negatively affect the caregiver’s health. In a study of family caregivers of patients with Alzheimer’s, the self-reported health of the caregivers declined steadily and significantly and emergency room visits and hospital-based services used by caregivers also doubled over that time[4].  Additionally, these family caregivers are contributing an average of $5,531 of their income each year towards caregiving expenses. With the national median household income of $43,026, this added cost can quickly turn into a significant financial burden.[5]

For these reasons a number of clinicians, nurses and social workers from Amedisys are offering their best advice for family caregivers. Our hope is that these tips will help ease the burden and allow family caregivers to live happier and healthier lives.

1.       Stay organized. To keep from getting overwhelmed, maintain detailed lists and instructions for administering medications, dressing wounds and working medical equipment. Ask a health care professional to demonstrate tasks for you and work with you to make sure the care is being provided correctly. If you still have trouble, know that it is always okay to call your doctor or home health provider to ask for more help.

2.       Be prepared for changes. Individuals with a diagnosis like dementia or Alzheimer’s can display challenging behaviors such as anger, agitation or aggression. Don’t try to win an argument with a patient with Alzheimer’s and remember that the behavior is caused by the disease, not the person. Work with your physical therapist, nurse or doctor on what to expect either physically or mentally. Ask questions.

3.       Take your time. One occupational therapist explained that rushing a patient through an activity could take away their sense of independence, causing them to become depressed or possibly cause an injury.

4.       Take a break, or arrange for support. “You may develop feelings of anger, resentment and bitterness because of the constant responsibilities, deprivation and isolation that can result from being a caregiver,” said a vocational nurse. “Research community agency help- take days to yourself as you hire adult day care, chore workers, home delivered meals, etc. to help relieve the physical stress.”

5.       Know that you are not alone. Contact your county to find out what services are available through your Area Agency on Aging, the Veterans Administration or other aging services provided based in your community.

6.       Take care of yourself. “Even though their family member’s care is their main priority it is important to remember to take care of themselves too,” said a hospice social worker. “If the caregivers don’t keep themselves healthy, then they can’t care for their family member.”

Kevin Henning, M.D., is a nationally recognized leader in hospice and palliative medicine, and a decorated U.S. Army veteran. Prior to joining Amedisys, Dr. Henning served as national medical director of Gentiva Health Services’ Hospice Division. While at Gentiva, Dr. Henning provided medical oversight and mentoring for hospice teams and medical directors at 37 sites, serving an average of 2,400 patients a day. As a physician in the U.S. Army, Dr. Henning has served in various roles at military hospitals from California to Georgia and overseas in Somalia. He also has served as a private practice family physician.

Dr. Henning is board certified in hospice and palliative medicine as well as in family medicine. He is a fellow of the American Academy of Family Practice and of the American Academy of Hospice and Palliative Medicine. He earned a Bachelor of Science degree from the University of California, Davis, a medical degree from the Uniformed Services University of the Health Sciences in Bethesda, Md., and he completed a residency in family practice at Martin Army Community Hospital in Fort Benning, Ga.

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