Is it wrong to force my mom with Alzheimer's to eat?

A fellow caregiver asked...

My mother has Alzheimer's and refuses to eat. She says everything smells disgusting even foods she loved and spits things out and yells. I have tried everything and sometimes can only manage to get a can of Ensure into her for an entire day. She is bedbound now and comes in and out. We have hospice coming in and helping the caregivers I've hired, but I just feel like we should feed her and even push it, but my sister thinks it's cruel. How can you decide when it's wrong to force the eating issue.

Expert Answer

Audrey Wuerl, RN, BSN, PHN, is education coordinator for Hospice of San Joaquin in California. She is also a geriatric trainer for the End-of-Life Nursing Education Consortium (ELNEC), which promotes education in geriatric nursing and end-of-life care.

Families become very distressed when their loved one refuses to eat. Our instincts tell us to provide nutrition to people who are ill. Food is symbolic of life and of love and of caring. But when a person reaches the final stages of dementia, such as Alzheimer's disease, the body can no longer metabolize food and food can stay in the digestive tract causing nausea and vomiting. Certain food may not taste or smell good (especially meat) and may be difficult to chew. Ultimately, the person may prefer only liquids, and then nothing at all. As your mother is nearing the end of life, allowing her to refuse food is one of the hardest decisions to make, but the kindest thing you can do.

But, won't Mom die if we don't feed her? Families need to refocus on what is really happening in Advance Dementia. The FAST scale (functional assessment staging scale) is one way to determine progression of dementias and to understand behaviors, such as refusing to eat, that most people exhibit. The following is a simple overview of the scale:

"¢ Levels 1"“5: Person experiences increasing forgetfulness, inability to perform complex tasks, and needs assistance with dressing. "¢ Level 6: Person needs help with bathing and toileting, and is unable to control bladder or bowels. "¢ Level 7: Person experiences inability to form intelligent speech, inability to ambulate without assistance, and requires total care.

The Alzheimer Association provides wonderful resources to help families cope with and understand the changes they observe"”especially about eating. Providing adequate food and fluids during the various stages (or levels) can be especially challenging to the family or the caregiver. Offering small meals that contain soft, sweet and cold foods seems to appeal to these patients. Ultimately, the disease process itself leads to reduced food and fluid intake partly due to declining perceptions of smell and taste; inability to feed oneself; and feelings or loss of control and depression.

By level 7 almost all activities of daily living are lost; the ability to eat is generally the last of the activities to be lost. Swallowing difficulties may lead to aspiration pneumonia and culminate in the patient being sent to the hospital. Generally, this is the point when the family and physician decide on comfort care and refer to hospice services.

The hospice nurse can explain the benefits and burdens of trying to feed your mother.
She's possibly having difficulty eating or has lost the desire to eat. This is generally followed by difficulty swallowing, so trying to continue to force feed her or can result in aspiration into the lungs, gagging, choking and problems like pneumonia.