Alzheimer's disease: Anticipating end-of-life needs
As an Alzheimer's caregiver, you might be your loved one's most powerful voice. Make decisions that ensure dignity and comfort for your loved one.By Mayo Clinic Staff
In the early stages of Alzheimer's disease, caregivers often focus on keeping loved ones safe and comfortable. As the disease progresses, however, you might face difficult end-of-life questions. When is it time to choose comfort care over lifesaving care for your loved one? 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 in the early stages of the disease with your loved one. Later, make sure copies of advance directives are included in your loved one's medical charts. This is important if your loved one moves to a nursing home or other facility for long-term care or needs care in a hospital or emergency room. 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 might not be able to communicate that he or she is in pain. Look for clues, such as a sudden increase in disruptive behavior or trouble sleeping. Physical signs might include sores, swelling, and feverish or pale skin. Speak to the medical team about adjusting your loved one's treatment plan to ensure his or her comfort.
Eventually, you might 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 — might result in unnecessary suffering for people who could otherwise reach the end of life in relative comfort and peace.
June 07, 2017
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- Detering K, et al. Advance care planning and advance directives. http://www.uptodate.com/home. Accessed March 12, 2017.
- Late-stage caregiving. Alzheimer's Association. https://www.alz.org/care/alzheimers-late-end-stage-caregiving.asp. Accessed March 12, 2017.
- End-of-life planning. Alzheimer's Association. http://www.alz.org/i-have-alz/end-of-life-planning.asp. Accessed March 12, 2017.
- Dementia at the end of life. National Institute on Aging. https://www.nia.nih.gov/health/publication/end-life-helping-comfort-and-care/dementia-end-life. Accessed March 12, 2017.
- Mitchell SL. Palliative care of patients with advanced dementia. http://www.uptodate.com/home. Accessed March 12, 2017.
- Yeo C, et al. Severe impairment rating scale: A useful and brief cognitive assessment tool for advanced dementia for nursing home residents. American Journal of Alzheimer's Disease & Other Dementias. 2016;31:87.
- End-of-life decisions. Alzheimer's Association. http://www.alz.org/. Accessed March 12, 2017.