One question that I've seen members of this Alzheimer's community often ask involves feeding a loved one with Alzheimer's. As dementia takes over a loved one's mind, it also can - and probably will - take over the person's ability to swallow, causing families to face the gut-wrenching decision about whether to insert a feeding tube.
Our family noticed that Mom was having difficulty eating solid food when she started coughing while eating a cookie (which I often brought to her when I visited). The nursing home staff, working in concert with her primary care physician, arranged for Mom to have modified barium swallow test. The results of that test indicated that Mom's swallowing ability was being lost and that she needed a thickened diet (which basically looked like pureed food). At that point, our family began to have discussions about whether (or not) we would agree to a feeding tube when Mom reached that point, which I wrote about in an earlier posting for this site.
Now those in the palliative medical community have come up with a third option - comfort feeding. Described in an article by New York Times writer Roni Caryn Rabin, this approach involves continuing to have the person who has Alzheimer's fed by hand. The person is fed only as much as he or she wants. Feeding is stopped if the person starts to choke or to become agitated.
This approach can be an important alternative, especially in light of a paper in The Journal of the American Geriatrics Society. The paper's authors "argue that feeding tubes do not necessarily prolong life in patients with advanced dementia, and that surveys indicate that a vast majority of nursing home residents say they would rather die than live with a feeding tube," Rabin said, adding, "Nor do they (feeding tubes) always prevent aspiration in people who have trouble swallowing, since they are at risk of aspirating their own saliva. Moreover, the tubes can be very uncomfortable, and people with dementia must often be physically restrained or sedated to prevent them from yanking the tubes out."
Advocates believe that comfort feeding provides a way for caregivers to maintain a very strong and healthy connection with a person who has Alzheimer's. Dr. Joan Teno, a professor of community health at Brown University's medical school, notes that careful hand-feeding provides a humane way to care for people with Alzheimer's and also preserves their dignity. "Just imagine someone interacting with the patient, talking to them, cueing them into eating as opposed to someone walking to the bedside and pouring a bottle of Ensure down the feeding tube," Teno told Rabin.
"Feeding tubes are used in about a third of all nursing home residents with advanced dementia, in part because the homes worry they could face regulatory scrutiny if their patients are losing weight," Rabin wrote, adding that a directive by the United States Conference of Catholic Bishops to Catholic health facilities states that they have an obligation to provide food and water to patients and supports the use of medically assisted nutrition and hydration. A care facility also may encourage the use of feeding tubes to the extensive time and labor involved in feeding someone with dementia who cannot swallow.
I think that comfort feeding is a great alternative to a very difficult decision that families face in considering a feeding tube. In retrospect, I think my mother used this approach in the 1980s when she was caring for my maternal grandmother who had undiagnosed dementia. But at that point, Mom was a small business owner who could get away to the nursing home when she needed to be there. For someone else who is in a 9-to-5 office job, this approach will be difficult. Although some people have the financial resources to be able to hire someone to help with this type of feeding, many do not. Still, I'd suggest that if you can think creatively - perhaps by asking family members or friends to help out with feedings - you may be able to make sure your loved one is nourished and avoid the stressful decision about a feeding tube.