We eat to live.

But food is more than fuel. Food has strong ties to family rituals, celebrations, and emotions.

Food is love. I’m thinking of a time, over 15 years ago, when my long-term boyfriend dumped me like a bad habit. Food started arriving in the mail. My mom send Red Vines licorice. My dad sent Mint Milano cookies. My friend Erin sent Mint Milano cookies. I really like Mint Milano cookies.

I don’t know if any of them actually said, “I’m so sorry, and I love you.”

They didn’t have to.

Food ain’t just food.

When a loved one living with dementia experiences a change in their preferred food, eating habits, and meal routines, we often struggle to adjust–sometimes because our family routines have to be modified.

I get asked a lot of questions related to appetite and food. First of all, yes, dementia can cause someone to eat more. And dementia can cause someone to eat less.

A person living with dementia might lose or gain a significant amount of weight. They often become more finicky about what they eat, but some individuals become less discriminatory and start eating foods they’ve disliked their whole lives–or even things that aren’t food at all.

Someone I know had to make the decision to help her husband with frontotemporal dementia move into memory care when she caught him eating a marble. Individuals living with dementia have been known to drink cleaning solution and eat Tide Pods. Obviously, people who are prone to eating non-food items need intense supervision and a carefully controlled environment for their safety.

Because the impacts in this area of life can be so diverse, I made a list of some of things to consider when thinking about dementia and food:

• People living with dementia might forget to eat. As individuals are less able to keep track of time, they might not recognize it’s time for a meal.
• People might be unable to purchase food or forget to do so. There might be little at their home to eat.
• Someone living with dementia might forget that they have eaten. If Mom doesn’t remember having breakfast, she might have a second breakfast. And then a third.
• Dementia impact visual perception. A person might struggle to recognize the food in front of them. This is especially true if the food is the same color as the plate.
• Dementia affects the senses, including taste. Food may be tasteless to individuals with dementia. Or perhaps the taste is just…off. If you have a loved one with dementia who insists you messed up a recipe that you’ve made for years, it may be that their tastebuds are not interpreting flavors like they used to.
• As dementia progresses, people living with dementia tend to prefer food that is sweeter and sweeter. This is a tendency and isn’t true for everyone, but it’s common that a person with dementia will start putting honey, jelly, or sugar on food (even if that food is not typically a sweet food). A former nutrition professor at the university where I work had Alzheimer’s. Her family found it ironic that she started putting copious amounts of honey on green beans, hamburgers, and spaghetti.
• Those with dementia are prone to food poisoning because they may not remember how long something has been in the fridge. In addition, their sense of smell might have changed, so an offensive smell that would typically signal something rotten doesn’t stop them.
• Medications can change a person’s appetite. It’s also common that a medication can leave a persistent metallic taste in one’s mouth. If you notice a change in eating habits, consider any alterations to a person’s prescriptions.
• Mouth pain or dentures that don’t fit well might cause a person to eat less or stop eating. A person with dementia might not be able to express this to care partners.
• As a person’s level of activity decreases, their appetite often decreases. If it’s possible to encourage exercise, you might see that a person is willing to eat larger portions.
• As with all of us, we eat more when we sleep less. And we eat less when we sleep more. If Grandma can’t sleep because of restlessness induced by dementia, she might snack throughout the night, leading to weight gain. If someone with dementia sleeps 18 hours a day, they are probably eating limited calories.
• Sometimes a person with dementia might struggle to use a spoon or fork. While we often transition to assisting them in the process of eating, finger foods can be a great way to allow them to maintain a bit more autonomy.
• As end stage dementia approaches, people may struggle with swallowing. This causes some people to be reluctant to eat. A speech-language pathologist can assist and help to prevent aspiration.
• At the end of life (due to a dementia-causing disease or another cause), people lose their appetite as their body becomes less able to process food. This is a natural part of the dying process, and dementia experts do not suggest a feeding tube in the vast majority of cases.

From a young age, culture dictates to us that food means love. We show our affection for people by feeding them. We get together with people we care about for meals and celebrations. When we express our care during an illness or after a family member’s death, we send a casserole–at least here in Iowa. In Minnesota, you’d call it a hot plate.

We show love by pushing food at people. When we don’t know what to say, we bake a cake. In my case, that’s a cheesecake. It’s the only type of cake I know how to make from scratch.

Unfortunately,  we often have to let go of that definition of love with dementia. We have to accept changes in food preferences…and, in the end, we have to accept (reluctantly) that person no longer needs food in the way that they once did.

Hospices will discourage families from forcing a loved one at the end of life to eat. In my experience, this can be challenging for families. How can you not feed someone you love?

In summary, dementia impacts appetite. It can impact food preferences. It can impact swallowing and the fine motor skills required to feed one’s self.

Yet…

Many of us still think of dementia as just memory loss.