My loved one with dementia won’t eat. What should I do?

David Heitz is a writer who spent 13 years looking after and advocating for his father with Pick’s Disease, who died last year. David is a member of the American Society of Journalists and Authors. Nothing breaks a caregiver’s heart like when their loved one stops eating. It’s then that we find ourselves asking: is this the end of the road? There are relatively simple ways to determine whether a refusal to eat is only temporary or may be indicative of end of life. One of the best, most successful ways to get a person to start eating again is to give your loved one a favorite food, often a sweet. My dad’s last meal was three bites of coconut cream pie from Village Inn that I spoon-fed him. Other times, the solution is as simple as making the food easier for your loved one to eat – puree meals, served in rooms without any distractions to keep the task of eating front and center. But generally, when a loved one stops eating, it’s because that conventional hand to mouth method has stopped working. As one nurse told me toward the end of dad’s journey, “Their refusal to eat is their last shred of dignity; the last thing they can control.” I found that sentiment rang true for dad, who always used to sneer, “You gotta eat to survive!” Dad, who lived with behavioral-variant frontotemporal degeneration, or Pick’s, for many years, always said no food tasted good to him. But for years he forced himself to eat anyway. Modern medicine has created ways of feeding people who can’t or won’t eat: feeding tubes placed directly into the stomach or intranasally. Conventional wisdom, however, is that feeding tubes are a bad idea, particularly for late-stage dementia patients.

Are feeding tubes ever appropriate?

“There is good research on this, finding that feeding tubes used in the last six months of life in cases of dementia do nothing to prolong life,” Geri R. Hall, PhD, ARNP, GCNS, FAAN, shared with me. “Patients tend to die from aspiration pneumonia (breathing in saliva). Placing a feeding tube does not stop saliva production and is one of the most uncomfortable things we do to medical patients … When the patient can no longer eat, they go into a calm, mostly pain-free state. It can take as long as 45 days for the patient to pass. The current standard of practice is no feeding tube.” My dad died a horrible death and was gone within seven days of those last three bites of coconut cream pie. I cannot imagine him lingering for 45. When he stopped eating he went into convulsions, and because he had lost the ability to vocalize, we witnessed “silent screams” where his face would turn red, he would buckle over onto his side, and he would grit his teeth in pain. I’m not saying dad should have had a feeding tube. His advanced directives (which I suggest everyone have) specifically said he did not want that. And what he wanted is all that matters. In research published in JAMA in August, Harvard doctors noted that feeding tube retention rates from 2000 to 2014 among nursing home residents with advanced dementia dropped from 12 percent to 6 percent. “To ensure the message from existing evidence and expert recommendations is disseminated and disparities are reduced, fiscal and regulatory policies are needed that discourage tube feeding and promote a palliative approach to feeding problems in patients with advanced dementia,” the authors concluded.

Caregiving at home means freedom of choice

When you care for a loved one in your own home, you can set many of your own rules. One caregiver I interviewed told me she believes her 54-year-old husband’s feeding tube has in fact improved his quality of life. “He still lives life and enjoys getting out and about. Right now, our discussion is leaning toward ‘no’ on a tracheostomy.” Tracheostomies are tubes that allow a person to breathe without using their nose or mouth, which produce secretions in the lungs. A recent case study on a woman in her 80s with mild dementia and dysphagia (inability to swallow) suggested framing discussions about feeding tubes in a similar manner. “Our patients and families need to understand why the dysphagia is happening and how likely it is that it might resolve or improve,” wrote Dr. Ross H. Albert in JAMA Internal Medicine. “Understanding goals – aggressive, conservative, or comfort-focused allows us to shape medical decisions to fit within their framework.”