Anticipating end-of-life needs of people with Alzheimer's disease

The challenges of Alzheimer's disease multiply as the end of life approaches. Here are some ways to prepare for the tough choices ahead.

People with end-stage Alzheimer's disease can't recognize their loved ones. They can't control their bowels or bladders. They can't communicate verbally.

When they reach this stage of the disease, they typically die within a year or two. But where is the dividing line, if there is one, between living and dying? When is it time to choose comfort care over lifesaving care? When does medical care merely prolong a person's dying?

These hard questions surround the difficult decisions caregivers must make when their loved ones reach the final stage of Alzheimer's disease.

A terminal disease

Alzheimer's is inevitably terminal. Medications can ease symptoms and delay the progress of the disease, but there is no cure.

Worse yet, Alzheimer's eventually robs people of the intellectual capacity to make decisions about their own medical care. That's one of the reasons why it's so important to talk about these types of choices early in the course of the disease and prepare a legally binding advance directive.

Nursing home care

People with end-stage Alzheimer's often are bedridden and need help with every aspect of their daily lives. The level of care becomes so high that most families find it necessary to move their loved ones to nursing homes.

Because so many people with Alzheimer's die in nursing homes, make sure a copy of your loved one's advance directives are in his or her medical charts, so the staff will know what is and isn't to be done in medical emergencies.

Comfort, not life extension

The Alzheimer's Association's Ethics Advisory Panel suggests that efforts to prolong life in the advanced stage of Alzheimer's result in unnecessary suffering for people who could otherwise reach the end of life in relative comfort and peace.

In the panel's view, antibiotics given to treat bacterial infections are considered life-extension efforts. So are invasive technologies — cardiopulmonary resuscitation, dialysis and tube feeding, for example.

At the other extreme, people with end-stage Alzheimer's often receive too little pain medication because they can no longer communicate the fact that they are in pain. A sudden increase in disruptive behavior, such as shouting and striking out at caregivers, may be a sign of inadequate pain control.

Eligible for hospice care?

Hospice care focuses completely on pain management and comfort care. It typically is reserved for people who have less than six months to live. However, very few people with Alzheimer's receive hospice care, partly because it can be so difficult to predict how long a person with end-stage Alzheimer's will live.

The National Hospice and Palliative Care Organization has published guidelines to help doctors determine when hospice is appropriate for people with Alzheimer's disease.

In general, the guidelines require a severity of dementia in which the person has lost the ability to communicate in any meaningful way and can no longer walk without assistance. In addition, the guidelines require at least one dementia-related medical complication, such as:

Aspiration pneumonia
Upper urinary tract infection
Sepsis or other overwhelming infections
Worsening bedsores
Weight loss greater than 10 percent over the past six months

Hospice care is usually covered by Medicare, Medicaid and private insurance. It can be provided wherever your loved one resides, including at a nursing home. If your loved one lives longer than six months after starting hospice care, the benefit can be extended. Conversely, you can choose to stop hospice care at any time.

Connect through the senses

Even if your loved one doesn't recognize you or can't communicate verbally, there are many ways to show reassurance and love. People with late-stage Alzheimer's experience the world through their senses, so use their senses to maintain a connection.

Touch. Hold your loved one's hand. Brush his or her hair. Give a gentle massage to the hands, legs or feet.
Smell. The person may enjoy the smell of a favorite perfume, flower or food.
Sight. Videos can be relaxing for people with Alzheimer's disease, especially ones with scenes of nature and soft, calming sounds. Many nursing homes have a giant bird cage inside so that the residents can watch and listen to songbirds.
Hearing. Reading to the person also can be comforting, even if he or she can't understand the words. The tone and rhythm of your voice are soothing.

Dying with dignity

Helping someone with Alzheimer's through the last years of his or her life is one of the most difficult journeys anyone can take. As the disease progresses, you end up making more and more decisions on the behalf of your loved one. Among the most profound of these decisions is ensuring that the person's most basic needs for respect, dignity and physical comfort are sustained until the end of life.