Alzheimer's disease: Anticipating end-of-life needs

As an Alzheimer's caregiver, you may be your loved one's most powerful voice. Make decisions for your loved one that ensure respect, dignity and comfort until the end of life. By Mayo Clinic Staff

In the early stages of Alzheimer's disease, you may focus on keeping your loved one safe and comfortable. As the disease progresses, however, you may face difficult end-of-life questions. When is it time to choose comfort care over lifesaving care? When does medical care merely prolong a person's dying? Here's help considering these and other end-of-life questions.

Create advance directives

Advance directives are written instructions regarding your loved one's preferences for medical care at the end of life. Ideally, discuss these preferences with your loved one while he or she is still able to communicate personal wishes. Later, make sure copies of advance directives are included in your loved one's medical charts. This is especially important if your loved one moves to a nursing home or other facility for long term care. The advance directives will help the staff know what is — and isn't — to be done in medical emergencies.

Focus on comfort, not life extension

As Alzheimer's progresses, your loved one may not be able to communicate the fact that he or she is in pain. Look for other clues, such as a sudden increase in disruptive behavior or trouble sleeping. Physical signs may include sores, swelling, and warm or pale skin. Then speak to the medical team about adjusting your loved one's treatment plan to ensure his or her comfort.

Eventually, you may need to weigh your loved one's comfort against the benefits of prolonged life. In some cases, efforts to prolong life — such as dialysis, tube feeding and antibiotics to treat bacterial infections — may result in unnecessary suffering for people who could otherwise reach the end of life in relative comfort and peace.

Mar. 01, 2011 See more In-depth