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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 staffIn 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 his or her 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 feverish 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.
Next page(1 of 2)
- Dementia care practice recommendations for assisted living residences and nursing homes. Alzheimer's Association. http://www.alz.org/national/documents/brochure_DCPRphase3.pdf. Accessed Dec. 17, 2008.
- End-of-life care. Alzheimer's Association. http://www.alz.org/documents/national/endoflifeEI.pdf. Accessed Dec. 17, 2008.
- Late-stage care. Alzheimer's Association. http://www.alz.org/national/documents/brochure_latestage.pdf. Accessed Dec. 17, 2008.
- Sachs GA, et al. Barriers to excellent end-of-life care for patients with dementia. Journal of General Internal Medicine. 2004;19:1057.
- Fast fact and concept #150: Prognostication in dementia. American Academy of Hospice and Palliative Medicine. http://www.aahpm.org/cgi-bin/wkcgi/view?status=A%20&search=125&id=659&offset=0&limit=25. Accessed Dec. 17, 2008.
