Written by Shannon Hazen, Director of Professional Services


One of the most common problems that we see in End-Stage Dementia is significant weight loss, loss of appetite, and dehydration.  For most of us, we know that food is life, we must eat to have fuel to continue to live.   So much of our culture is geared around food.  We celebrate, grieve, do business, and congregate around food.  It is hard to conceptualize why our loved one appears to choose not to eat or is no longer interested in the rituals regarding food.  Also, as our loved one loses the ability to functionally eat, they can become combative and agitated especially when pushed to eat.  Food becomes a fight.   So today, I would like to discuss why that occurs, and what we can do to ensure that our loved one is comfortable when they are no longer taking in adequate amounts of food or fluid.

What is the cause?

Remember that we are talking about a shrinking brain, the ability to recognize foods and remember them is lost.  Age-related loss of smell and taste can affect the desire to eat and foods that used to taste good and textures that were formerly acceptable may have changed. As the brain declines, it is possible to develop dysphagia, the loss of the ability to swallow and some believe that there is a natural progression or withdrawal from the world, and the patient simply does not need or desire food as the body is dying.  Whatever the cause, poor nutrition and weight loss are two of the most common concerns in End-Stage Dementia.

Click here to see some of the great information that The Alzheimer’s Association provides regarding tricks and tips for eating.  Many of these points are excellent in mid and End-Stage Dementias.

The hospice philosophy of food and fluid intake is that we encourage eating but never force.  Often, when we push the issue, we intensify the feelings of loss of control and a patient will become agitated.  By providing a high-calorie snack that provides pleasure and some calories, we are essentially meeting a need for energy and decreasing a feud.  Unless the patient has no swallowing ability, we should consider what is going to make the person the happiest.  Being consistent, providing a calm environment, and limiting options so that a plate of food doesn’t seem overwhelming can-do wonders.

But what happens when nothing works?  What should we do when mom won’t eat anymore?  What do we do when she won’t drink from a straw and struggles to drink from a cup?  Is mom starving? These are all questions that are asked with end-stage Dementia when nutrition and hydration are lost.

Barbara Karnes, RN is a Hospice and end-of-life educator with publications that have reached millions of people since 1985.  Her publications are used to comfort, educate, and provide understanding to those facing terminal and end-stage diseases.  She provides a very clear and simple understanding of food and fluids.  Please feel free to read that blog by Barbara Karnes, RN.

This leads to talking about what is a natural death and what is not.  Providing nourishment or not providing nourishment can be controversial.  In a world where IV fluids and tubes can be placed to provide nutrition, it is difficult to know what the right thing is to do.  Religion and cultural influences can play a role in determining the course of action and our own relationship with food is a factor.

For me, a natural death is one without tubes and devices supplementing normal bodily functions such as breathing and eating.  My personal desire is when my time comes that I will be kept comfortable and that my passing is peaceful with my family around me.  It is important to know where you and your loved ones’ belief system stands in this situation and to make that clear to caregivers.

Providing nutrition is not usually a concern in end-of-life; the body is dying.  If you refer to my opening paragraph, we know we need food to live, but if we are dying and it is taxing to our body, food should be offered to provide energy, comfort, and pleasure but not focused on as a source of continuing life.  Continue to offer foods, but don’t make it a battle.  Try the favorites, but don’t take it personally if the food is not eaten.

When your loved one stops drinking, does not seek fluids, or shows no interest, try alternatives, such as popsicles, jello, or a favorite beverage. Dehydration in the end should not be a factor of concern if comfort is maintained.  Remember to provide moisture for the lips, offer oral swabbing, and continue to offer sips of fluid.  In the end, comfort should be the main priority, don’t make a battle over something that is just a part of the process.

In my next blog, we will go over terminal delirium, restlessness, and agitation in the end-of-life patient.  Terminal delirium is often the hardest symptom to treat in many patients and in Dementia patients especially.  The symptoms can wear a caregiver down and can bring up serious safety concerns.  For a sneak peek of the topic, click here.