Healthinaging.org is pleased to feature a guest blog by Dr. Ramona Rhodes.
Ramona Rhodes, MD, MPH, MSCS, AGSF
Assistant Professor of Internal Medicine
Geriatrics and Palliative Care Sections
University of Texas Southwestern Medical Center
My Cousin Opal was my paternal grandmother’s cousin. They were close in age, grew up together, and were best friends. Cousin Opal was college educated—a great accomplishment for an African American woman born in the South in the early 1920s. She was a school teacher, community leader, social butterfly, and true fashionista.
I met Cousin Opal when I was in high school. Cousin Opal was widowed and did not have children. She had relocated from the Northeast to our small town, and was living with my grandmother at the time. Cousin Opal began to exhibit problems with her memory, and though the word “Alzheimer’s” was whispered, my grandmother would never discuss it.
Over time, Cousin Opal became increasingly more forgetful, and she would only say a few words. Food became harder to swallow, so my grandmother would blend things up into a puree to make it easier. Eventually Cousin Opal stopped talking, stopped walking, and could not get out of bed. And then, of course, Cousin Opal stopped eating. My grandmother then made the decision to place a feeding tube.
Dementia is a neurodegenerative disorder (disorder that affects the brain) that results in memory loss and decline in function. As dementias like Alzheimer’s disease progress to the advanced stage, patients become weaker and more dependent. They lose their ability to talk, move around, and have a hard time with chewing and swallowing. As a result, caregivers of dementia patients are often faced with the decision to place, or not place, a feeding tube for nutritional support.
Research on the use of feeding tubes in persons with advanced dementia is emerging. This research has shown that feeding tubes do not:
- improve survival
- lower risk of aspiration (inhaling food into the lungs) and pneumonia
- help wounds heal faster
In fact, recent research has shown that people with advanced dementia who have feeding tubes in place often require burdensome transfers to the emergency room. This can happen because of complications that may result from having a feeding tube in place, such as the tube moving out of place or clogging of the tube.
Because there is growing evidence of the problems with feeding tube use in persons with advanced dementia, organizations such as the American Geriatrics Society (AGS) have created position statements that address this very complex issue. Click this link to see the AGS’ position statement.
Additionally, feeding tube use in this population has been identified by the American Geriatrics Society and American Academy of Hospice and Palliative Medicine as one of the “five things physicians and patients should question” in the American Board of Internal Medicine Foundation’s Choosing Wisely® campaign. These and other resources are available to assist caregivers and healthcare providers in having meaningful discussions about goals of care that are based on evidence and consistent with patients’ values and preferences.
If you are the caregiver of a family member with dementia, remember to ask your healthcare provider about what to expect as your family member’s memory problems progress. It is also important to think about your family member’s values and preferences, and talk with the healthcare team about overall goals of care. Talk to the healthcare provider about using oral assisted feeding (when someone helps feed you using a spoon) instead of tube feeding. Regardless, you should not feel pressured to make a decision, and you should feel free to ask questions at any time.
To answer questions you may have about tube feeding and alternatives for older adults with advanced dementia please see Healthinaging.org’s Ask the Geriatrician feature.