What You Taste in Dementialand

This is the third in a series of post about dementia and the senses.

Today we address taste.

We use our taste buds to taste four flavors: salty, sweet, bitter, and sour. (There is some controversy about whether there is a fifth flavor, umami, which is sometimes described as savory, but we’ll leave that for another discussion.) Everything we eat–Cheetos, tofu, kiwi, frozen waffles–is a unique blend of these flavors.

Taste is our perception of the combination of chemical signals on the tongue. Dementia may alter this perception.

We think that our ability to perceive bitter may be altered the least as dementia progresses. This may explain why people with dementia tend to reach for sweets. They are attempting to compensate for something that tastes more bitter than it used to. Although the specific cravings and preferences of people with dementia vary, there is no doubt that dementia changes how we experience the combination of tastes as we eat.

Let’s say Lee has Alzheimer’s and was recently admitted to a nursing home. For many years, she and her husband have frequented a local Italian restaurant. She’s been asking her family to take them there for their upcoming 50th anniversary. Her family thinks this is a fabulous idea and makes reservations for a dozen people. Several weeks in advance, they start to talk to Lee about the event. They even mark the date on a big calendar in her room.

The day finally comes, and the nursing home staff dresses Lee in her favorite dress. Her family gets her to the restaurant. She orders the fettucine alfredo–the same dish she has ordered at this restaurant since it opened 30 years ago.

When her food arrives, she takes one bite and says, “This is awful. I don’t know why they changed the recipe. I can’t even eat this.”

I hear variations on this story. Sometimes it’s a family holiday recipe. Sometimes it’s a chocolate chip cookie from a recipe that Grandma herself perfected. Maybe it’s a boxed cake mix that isn’t the same as the last time Mom purchased it.

Grandpa tells grandma that she obviously forgot to put an ingredient in her special coleslaw this time. A mom loudly tells her adult daughter that another family member messed up the Christmas turkey in such a horrid way that it’s not even edible. Maybe she even throws it out when no one is looking.

If there’s one thing I’ve learned in the world of family life and caregiving, it’s that food is more than food. Food is love. If we love people, we want to feed them.

There is nothing more heartbreaking to me than a family member who goes to the ends of the earth to bring a loved one with dementia their favorite food in effort to show love…and then that loved one takes one bite and spits it out in disgust. Unfortunately, it happens a lot.

The person who has dementia isn’t intending to be difficult. It really does taste all wrong to them. Maybe it was their favorite food. Maybe it wasn’t that long ago that they really enjoyed it. And maybe they even requested it. But it doesn’t taste right.

On the other hand, sometimes foods that would not have been appealing in the past to someone with dementia become irresistible. I know a guy who ate a whole can of store-bought vanilla frosting while his wife was in the shower. She only realized this when she saw the empty frosting can in the trash.

“How could you eat something that sweet?” she asked him.

“I used a spoon,” he responded matter-of-factly.

The same man also managed to eat an entire box of powdered cake mix and about a cup of straight brown sugar once when his wife was downstairs folding laundry. She realized she would have to keep some of her grocery items locked in a cabinet. She decided to leave a few pieces of hard candy out at a time, so he could have a sweet treat without going overboard.

When someone tells me that their loved one with dementia only wants ice cream, or cookies, or cake, or pudding, I tell them that that the closer the person is to end-of-life the more they should give in to these preferences. If someone with dementia has years of life ahead of them, balance their preferences with an overall balanced diet when possible.

As they near the end of their journey, you give them whatever delightfully sugar- and fat-laden treat they crave.

 

12 thoughts on “What You Taste in Dementialand

  1. Thanks Elaine. This explains a lot. My husband will loudly and angrily declare that food he used to love, now tastes awful. I understand it, I get it, but I still struggle with my internal reactions. Especially when there is blame involved.

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  2. Exactly what happens at our house. A whole package of his favorite McVittie’s chocolate biscuits, purchased Tuesday, gone on Wednesday. I could go on… I try to balance, as you say, but it’s difficult when he craves sweets. Also potato chips…an entire bag in an evening. I’ve taken to hiding them in my clothespin bag where he never would look!

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  3. Amen. Our PCP told my husband to eat whatever he wants, so if it’s cookies for breakfast that he wants, it’s cookies for breakfast that he gets! I would hope that my loved ones would do the same for me if I was told I only had a few years to live. I’ve also heard that that is why nursing homes add sugar to the mashed potatoes. It tastes better to the patients!

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  4. Thank you so much for this article! My grandmother who has dementia lives with us, and this explained why she went from someone who was completely adverse to sweets to someone who craves it on a daily basis. Also, thank you for being so kind in the way you talk about caregivers. That means a lot 🙂

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    1. Thank YOU for your comment. I sometimes think that taste for someone with dementia is like tuning a guitar. It gets “out of tune” and it’s not quite right…but the person can’t really explain it.

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