Caregiver Corner: Late Stage Care

LateStage

The late stage of Alzheimer’s disease may last from several weeks to several years. As the disease advances, intensive, around-the-clock care is usually required. It’s during this time that many families will make some of the hardest care decisions.

Since care needs are extensive during the late stage, they may exceed what you can provide at home, even with additional assistance. This may mean moving the person into a facility in order to get the careneeded.

Deciding on late-stage care can be difficult. Families that have been through the process tell us that it is best to gather information and move forward, rather than second guessing decisions after the fact. There are many good ways to provide quality care. Remember, regardless of where the care takes place, the decision is about making sure the person receives the care needed.

During the late stages of Alzheimer’s, your role as a caregiver focuses on preserving quality of life and dignity. Although a person in the late stage of Alzheimer’s typically loses the ability to talk and express needs, research tells us that some core of the person’s self remains. This means you may be able to continue to connect throughout the late stage of the disease.

At this point in the disease, the world is primarily experienced through the senses. You can express your caring through touch, sound, sight, taste and smell. For example, try:

  • Playing his or her favorite music
  • Reading portions of books that have meaning for the person
  • Looking at old photos together
  • Preparing a favorite food
  • Rubbing lotion with a favorite scent into the skin
  • Brushing the person’s hair
  • Sitting outside together on a nice day

Common late-stage issues

Food and Fluids: As a person becomes less active, he or she will require less food. But, a person in this stage of the disease also may forget to eat or lose his or her appetite.

Bowel and bladder function: The person may need to be walked to the restroom and guided through the process. Incontinence is also common during late-stage Alzheimer’s.

Skin and body health: A person with late-stage Alzheimer’s disease can become bedridden or chair-bound. This inability to move around can cause skin breakdown, pressure sores and “freezing” of joints.

Infections and pneumonia: The inability to move around during late-stage Alzheimer’s disease can make a person more susceptible to infections.

Pain and illness: Communicating pain becomes difficult in the late stages. If you suspect pain or illness, see a doctor as soon as possible to find the cause. In some cases, pain medication may be prescribed.

Hospice is an option at end of life. The underlying philosophy of hospice focuses on quality and dignity by providing comfort, care and support services for people with terminal illnesses and their families. To qualify for hospice benefits under Medicare, a physician must diagnose the person with Alzheimer’s disease as having less than six months to live.

Ideally, discussions about end-of-life care wishes should take place while the person with the dementia still has the capacity to make decisions and share wishes about life-sustaining treatment.

For more detailed and specific information and training on how to cope with common late stage issues, contact the Alzheimer’s Association’s 24/7 Helpline at 800.272.3900 or visit www.alz.org/care.