Alzheimer's Foundation of America

Foundation of America

When End of Life Nears

Providing end-of-life care for a loved one with dementia can be unpredictable, and we don’t often know what to anticipate.

Barbara Karnes, RN, an end-of-life educator and hospice pioneer who created the New Rules for End-of-Life Care film to guide and educate on the dying process, provides some helpful reminders about what families and caregivers can expect:

There are normal, natural ways that every person dies – disengaging from everyday life, sleeping more, and eating less. However, there is no pattern for people with dementia. People living with dementia may already be withdrawn for years, may forget how to swallow, and may already nap frequently.

Always offer food and water, but never force it. Food is the anchor that holds us to this world, and dehydration is normal in the weeks and months before death. Towards the end of life, a person will be asleep for more hours than they are awake. If you suspect pain, Karnes recommends treating it until the dying process is complete. Look at your person’s disease history as well as their dementia history. Does your person also have heart disease, diabetes or cancer? Try to understand what complications may be creating pain and treat them accordingly.

Many of us hope to be with the person whom we love when they die. When you can’t, take comfort in what you can do. Being prayerful may be helpful to some. Karnes also suggests “mind talking” to say goodbye. Karnes believes that it is possible the body may still be able to hear and perceive what’s going on, from a distance, through the moment of death. Sit in a comfortable position, close your eyes, and picture your loved one in your mind. Imagine them asleep in bed and walk over to them. Say everything you would if you were with them in person. You may want to hold their hand in your mind. Sit quietly with them until you feel you can “say” goodbye.

Barbara Karnes writes a weekly blog answering questions for loved ones about the dying process at

This article originally appeared in Alzheimer’s TODAY, Volume 17, Number 1, published by the Alzheimer’s Foundation of America. View the entire issue by clicking here.