Caregiving 101

Alzheimer’s disease (AD) is a progressive and irreversible brain disorder that is characterized by a steady decline in cognitive, behavioral, and physical abilities severe enough to interfere with daily life. Hallmark signs of Alzheimer’s disease are memory loss, disorientation, and diminished thinking ability followed by a downward spiral that includes problems with verbal expression, analytical ability, frustration, irritability, and agitation.

With disease progression, physical manifestations include loss of strength and balance, inability to perform simple tasks and physical activities, and incontinence. As more of the brain is affected, areas that control basic life functions like swallowing and breathing become irreversibly damaged, ultimately leading to death. The course of Alzheimer’s disease and rate of progression vary from person to person, ranging from an average of five to eight years to more than 20 years from onset of symptoms (Texas Council of Alzheimer’s Disease and Related Disorders, 2008 Biennial Report).

Alzheimer’s disease is the seventh leading cause of death in the United States and has an economic burden that exceeds $172 billion annually. Currently, 5.4 million people in the United States have Alzheimer’s disease, including approximately 340,000 Texans. Nationally, Texas ranks third in Alzheimer’s disease cases and second in Alzheimer’s disease deaths. A new person develops Alzheimer’s disease every 70 seconds, and current projections indicate that this rate will increase to one new case every 33 seconds by 2050.

In 2009, there were an estimated 10.9 million unpaid caregivers of individuals with Alzheimer’s disease in the United States, most of whom were family members. These individuals are confronted daily with enormous challenges of caring for a loved one with Alzheimer’s disease. In Texas, 852,820 unpaid caregivers are providing care to an estimated 340,000 individuals with Alzheimer’s – this equates to 971,191,823 hours of unpaid care at a cost of $11,168,705,965 per year (2010 Alzheimer’s Disease Facts and Figures, Alzheimer’s Association).

Providing care for a person with Alzheimer’s disease is often a stressful and demanding ordeal. It is important to remember that caregivers have human needs and emotions. They must care for themselves and well as their loved one.

The “Caregiver’s Bill of Rights” helps identify some of the common and “normal” emotions caregivers may experience.

It is all right to:

  • Be angry.
  • Turn this energy into positive action. Clean closets, take a walk, talk with someone.
  • Be frustrated.
  • Stop the present activity, take a deep breath and begin a different activity.
  • Need time alone.
  • A favorite chair in a quiet room, a trip to the store or out with friends.
  • Need and ask for help.
  • Explore family, friends, and local agencies for services needed. Most doctor’s offices and clergy can make referrals.
  • Trust your judgement.
  • Relax, you are doing the best you can.
  • Recognize your limits.
  • You are a valuable person. Take care of yourself, too!
  • Make mistakes.
  • So, who’s perfect! This is how we learn.
  • Grieve.
  • This is a normal response to loss. You may be sad over the loss of the ways things used to be.
  • Laugh and Love.
  • It can seem out of place, but your capacity to feel is not gone and can occur unexpectedly.
  • Hope.
  • Tomorrow, the day may go smoother, a friend may call, a cure may be found.

Source: American Health Assistance Foundation

Signs Description What The Caregiver May Say
Denial About the disease and its effect I know that mom is going to get better
Anger At the person with the disease or others If he asks me that question one more time, I will scream
Social Withdrawl From friends and family that once brought pleasure I don’t care about getting together with the neighbors anymore
Anxiety About facing another day and what the future holds What happens when he needs more care than I can provide?
Depression Begins to break the spirit and affects the ability to cope I don’t care anymore
Exhaustion Makes it nearly impossible to complete necessary daily tasks I’m too tired to do anything
Irritability Leads to moodiness and triggers negative responses and reactions Leave me alone!!
Sleeplessness Caused by a never-ending list of concerns What if she wanders out of the house, falls, and hurts herself?
Lack of Concentration Makes it difficult to perform familiar tasks I was so busy, I forgot we had an appointment
Health Problems Begin to take their toll both mentally and physically I can’t remember the last time that I felt good

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