What the End of Life Looks Like With Alzheimer’s0 USER TIPS ADD YOUR TIP
On average, a person with Alzheimer’s disease lives four to eight years after diagnosis, but the disease can progress differently in each person. Some people can live as long as 20 years with Alzheimer’s. However, early-onset Alzheimer’s (diagnosed in people under the age of 65) is a more aggressive disease and many deteriorate faster. While every person is different, here’s what you can expect as someone with Alzheimer’s nears the end of life.
What late-stage Alzheimer’s looks like
As the disease progresses, people with severe Alzheimer’s can completely lose the ability to communicate and control their movements. They may have difficulty holding their head up, will not be aware of their surroundings, and will need full-time care. They sleep more and are awake less. They lose the ability to do all of life’s basics and need to be dressed, bathed, fed, and changed when they urinate or have a bowel movement—they’ll essentially need the same kind of care a newborn requires.
How people with Alzheimer’s die
Because people with late-stage Alzheimer’s are less mobile, they are at a higher risk for infections. Age also brings a higher risk of infection, research suggests. Factors such as communal living and other diseases of aging that weaken the immune system may play a role, too.
“Pneumonia, urinary tract infections, skin infections from an ulcer skin break—all can lead to a life-threatening illness,” says Tara Liberman, DO, associate chief of the Division of Geriatrics and Palliative Medicine at Northwell Health, in New Hyde Park, New York.
A person with Alzheimer’s may die if they aspirate food particles or water into their lungs and develop pneumonia. “People may have difficulty swallowing later in dementia and can forget to swallow and food can go down the wrong pipe and into the lungs—it’s very common as patients get to the end. It could go on for weeks to months, but in some people, it can happen relatively suddenly,” Liberman says.
Hospitalizing someone with severe Alzheimer’s for an infection may only prolong suffering without necessarily extending their life. For example, a 2015 study published in the Journal of the American Geriatrics Society found that using antibiotics to treat urinary tract infections in women with advanced dementia did not have a significant affect on survival. And a 2010 study found that more aggressive treatment for pneumonia (for example, hospitalization) in people with advanced dementia was associated with decreased comfort.
Certain other health problems that are associated with Alzheimer’s may also cause complications that lead to an earlier death. They include:
Planning for the end of life with Alzheimer’s
Experts encourage people with Alzheimer’s to have difficult conversations about end-of-life care with their families when they are still able to express their wishes. The Alzheimer’s/Dementia Starter Kit from The Conversation Project can help guide you through having those conversations with a loved one who has been diagnosed with Alzheimer’s.
Ideally, a person will put in place an advance directive that states the type of medical care they want to receive or not receive. This may include respirators, feeding tubes, IV hydration, CPR, palliative care, and hospice care. A durable power of attorney for health care lets a person choose a spouse or partner, a family member, or a good friend to make decisions about care and treatment when they are no longer able.
Some groups have developed advance directives specifically designed for people with Alzheimer’s or dementia. End of Life Washington created this detailed form, based on Washington State law, and University of Washington internist Barak Gaster, MD, developed a simpler advance directive for dementia. These forms may not be legally binding in your state, but they can be helpful for starting a family conversation about the kind of care the person with Alzheimer’s would or would not want at the end of their life.