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Coping with Confusion at End of Life – Tips for Caregivers and Family Members

If someone close to you is dealing with a terminal illness, you probably want to do everything possible to support your loved one during the end-of-life process. While your loved one will likely experience many changes during this time, confusion at the end of life can be one of the most difficult for caregivers and family members.

“In many patients with a terminal illness, confusion at the end of life can be a normal part of the dying process,” explains UAB palliative medicine specialist Donna M. Bearden, MD. “This type of end-of-life confusion — called terminal delirium — can affect up to 60 to 70% of patients with a terminal diagnosis. In many cases, this type of delirium begins two to three weeks prior to death.”

Dr. Bearden says several changes that occur during the end of life can cause terminal delirium, or end-of-life confusion. “These patients can begin to experience delirium months prior to death instead of weeks before, which is more typical of patients with no underlying cognitive impairment.”

Common Signs of End-of-Life Confusion

“It’s important to understand that acute changes in behavior or demeanor can occur within hours or days,” says Dr. Bearden. “These changes can fluctuate, becoming better or worse within a short time period.” She points out that in many older adults, symptoms of end-of-life confusion often become worse at night.

Some common symptoms of confusion include:

  • Inability to remember family members and/or caregivers (can be intermittent)
  • Reporting visions of family members or others who have died
  • Reverting back to previous occupations or roles
  • Periods of hyperactivity
  • Signs of agitation, such as pulling at sheets or attempting to get out of bed
  • Striking out at family members/caregivers (physically or verbally)
How Family Members/Caregivers Can Cope

Dr. Bearden stresses that it’s important for family members and caregivers to report any signs of confusion to your doctor. “I want to determine if the delirium is reversible or a natural part of the dying process,” she explains. “In some patients with terminal illness, a delirium may be caused by an infection or other treatable physical problem. In these cases, identifying and treating the underlying cause of confusion can give the patient more quality time with his or her loved ones.”

Other Important Steps Family Members/Caregivers Can Take Include:

  • Pay Attention to Sleep/Wake Cycles – “Make certain your loved one has plenty of quiet time and darkness at night as well as natural light during the day to maintain proper sleep/wake cycles,” advises Dr. Bearden.
  • Focus on Unmet Needs – “Many patients may have difficulty communicating toileting needs, pain, or other feelings of discomfort,” explains Dr. Bearden. “Pay close attention to signs of tension or pain, such as grimacing and restlessness.”
  • Provide a Comfortable Surrounding with Familiar Faces – “Patients tend to experience less confusion in stable, familiar surroundings,” adds Dr. Bearden.
  • Speak to Your Doctor About Medications, If Needed – “In some cases, medications can be used to sedate patients who are experiencing delirium,” explains Dr. Bearden. “In these cases, we want to balance the patient’s need for comfort and safety with the family’s need to spend quality time with their loved one.”
Article last updated: November 17, 2009 9:36 AM