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.
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.
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.
Hospice care focuses on pain management and comfort care at the end of life. Hospice care is typically reserved for people who have fewer than six months to live. Because this time frame can be difficult to predict in end-stage Alzheimer's, hospice care is generally considered appropriate when a person who has end-stage Alzheimer's:
- Has lost the ability to communicate in any meaningful way
- Can no longer walk without assistance
- Has at least one dementia-related medical complication, such as aspiration pneumonia, urinary tract infection, infection or weight loss
Hospice care can be provided anywhere, including a nursing home. If your loved one lives longer than six months after starting hospice care, the benefit can be extended. Likewise, you can choose to stop hospice care at any time.
Palliative care — which aims to improve quality of life for people who have advanced illnesses — also may be appropriate. Unlike hospice care, palliative care is available at any time during a serious or life-threatening illness. It's offered in conjunction with other medical treatment and is meant to help ease symptoms, relieve pain, address spiritual and psychological concerns, and maintain dignity and comfort.
Even if your loved one doesn't recognize you or can't communicate verbally, you can still show reassurance and love. To maintain a connection, use your loved one's senses:
- Touch. Hold your loved one's hand. Brush his or her hair. Gently massage your loved one's hands, legs or feet.
- Smell. The scent of a favorite perfume, flower or food may be comforting.
- Sight. Show your loved one a video with scenes of nature and soft, calming sounds. If your loved one lives in a facility with a bird cage, take him or her to watch the birds.
- Hearing. Read aloud, even if your loved one can't understand the words. The tone and rhythm of your voice may be soothing.
Helping someone who has Alzheimer's through the last years of life is a difficult journey. As the disease progresses, you'll make more decisions for your loved one. Among the most profound are decisions that ensure respect, dignity and physical comfort until the end of life.
Mar. 01, 2011
- 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. 2, 2010.
- End-of-life care. Alzheimer's Association. http://www.alz.org/documents/national/endoflifeEI.pdf. Accessed Dec. 2, 2010.
- Late-stage care. Alzheimer's Association. http://www.alz.org/national/documents/brochure_latestage.pdf. Accessed Dec. 2, 2010.
- Palliative care: The relief you need when you're experiencing the symptoms of serious illness. National Institute of Nursing Research. http://www.ninr.nih.gov/NewsAndInformation/NINRPublications/. Accessed Dec. 2, 2010.
- Van der Steen JT. Dying with dementia: What we know after more than a decade of research. Journal of Alzheimer's disease. 2010;22:37.