For families caring for someone living with dementia, changes in eating habits can be concerning.

Food may be prepared, placed within easy reach, and kept in a fully stocked refrigerator, yet the person may not seem interested in eating.

Sometimes, however, the reason has nothing to do with the food or the person’s appetite.

It may have to do with whether the person can still recognize where the food is, what it is, and what they are supposed to do with it.

Lourdes and the Refrigerator

“Lourdes” lives in an independent living home with support from her daughter, “Vikki.”

Vikki made sure her mother had plenty of food and drinks available in the refrigerator. She kept it stocked with things Lourdes could eat and enjoy.

The refrigerator door was covered with family photographs.

For Vikki, the photographs served an important purpose. They made the room feel warm and familiar and surrounded Lourdes with reminders of the people she loved.

There was nothing unusual about wanting to make her mother’s space feel like home, but Vikki began noticing that Lourdes was not eating some of the food that had been placed in the refrigerator for her.

Then she noticed something else. – Lourdes wasn’t even opening the refrigerator.

Something Wasn’t Making Sense

As a Dementia Consultant, I often begin by asking a simple question: “Why? What is the person experiencing that we may not be seeing?”

When Vikki shared that her mother was not eating some of the food in the refrigerator nor opening the refrigerator at all, this made me wonder if the refrigerator itself was part of the problem.

The refrigerator had a flat door with no obvious handle.

It was also covered with family photographs.

To Vikki, it was clearly a refrigerator, but could her mom still recognize it as one?  Could she tell where the door opened?  Could she understand that the food and drinks inside were there for her?

Unfortunately, in Lourdes’s  case, the refrigerator may no longer be recognizable for her to find food. 

What Was Happening?

This is an important concept in dementia care.

Dementia can affect a person’s ability to recognize objects, understand what they are used for, and carry out familiar actions.

Apraxia is a problem with carrying out learned, purposeful actions even when the person may still have the physical ability to perform them. In other words, the person may still have the ability to move and use their hands, but may have difficulty knowing what to do with an object or how to use it in the way they once did.

Other familiar examples include: 

• have difficulty using a fork or spoon correctly;
• struggle to operate a familiar appliance;
• have difficulty putting on clothing in the correct way;
• struggle to complete the steps involved in making a familiar drink or preparing food.

The difficulty is not necessarily that the person has forgotten everything about the object. The connection between the object, its purpose, and the action needed to use it may have become harder to access.

Time to Get Creative and Change the Environment

After this detective work to understand why Lourdes wasn’t eating or going into her fridge, it was time to focus on what could be changed to help her to recall how to use the fridge.

Since the fridge did not have a usual handle, the first step was to remove the photos from the side of the door that opened and leave that area clear, creating a simple visual cue for Lourdes. Then, a simple sign was placed on the refrigerator:

“FRIDGE – OPEN HERE”

To help remind her how to use the items inside the refrigerator, food items were clearly labelled “EAT.” Similarly, beverages were labeled “DRINK.”

We modified Lourdes’ environment to make it more familiar, easier to understand, and easier to recognize. 

By adding simple, clear cues, the refrigerator and the items inside it became easier to identify and use.

Seeing the Environment From Their World

Lourdes’ story is a good example of why it is important to look at the environment from the perspective of the person living with dementia.

What makes sense to us may not make the same sense to them.

Vikki saw a refrigerator covered with photographs of family.

Lourdes may have seen a large, flat surface covered with pictures, not recognizing it was a refrigerator.

Vikki knew there was food inside.

Lourdes may not have understood that the door opened or what was inside was for her to eat and drink.

The photographs were placed there with love. The intention was good.

However, sometimes something that makes an environment feel more personal and meaningful can make an object less recognizable and more confusing to a person living with dementia.

This is something to keep in mind when purchasing furniture, appliances, containers, or other everyday items for our loved ones.

Whenever possible, choose things that are familiar, recognizable, easy to see, and easy to understand.

Person Centred-Care in Dementia

Understanding changed behaviours takes time.

There is no “one-size-fits-all” approach to dementia care. What works for one person may not work for another, and what makes perfect sense in one situation may make very little sense in another.

In Lourdes’ case, most of us would never look at a refrigerator covered with family photographs and think, “This might be making it harder for her to recognize the refrigerator.” To us, the photographs represent family, love, familiarity, and home.

Lourdes, however, was experiencing her environment through a brain that was changing.

That is what makes dementia care a journey.

Understanding Why It’s a “Dementia Care Journey”

As the brain changes, the way a person sees, understands, responds to, and interacts with the world can change too. When the person’s behaviour changes, we need to change the way we look at it.

This is why we encourage families and professionals to “listen” to changed behaviours as a form of communication.

We can ask:

“What is this changed behaviour telling us?”

This is what we mean by “person-centred care.”

It is not simply about providing care for the person. It is about trying to understand the world from the person’s perspective and adjusting our approach as their needs change.

The person is always teaching us something through their changed behaviours.

Listen. Observe. Question. Adjust.

Reach out. Ask questions. Talk to others who understand dementia.

A support group, dementia consultant, healthcare professional, or other experienced caregiver may notice something you have missed or help you look at the situation from a different perspective.

There is always more to learn because dementia is continually changing how the person experiences the world.

Most importantly, sharing reminds you that you are not alone on this journey.

Support can bring a different perspective, shed light on what may be difficult to see on your own, and help ease the burden of carrying it all yourself. Sometimes, simply knowing that someone is there to listen, understand, and walk alongside us can make the journey feel a little lighter.

We are grateful to the families who share their experiences with us. These stories help other families and care professionals recognize that behaviours in dementia often have meaning, even when that meaning is not immediately obvious.

To protect privacy, names and identifying details in this story have been changed or omitted. The situation is shared with permission and is presented for educational purposes.

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DISCLAIMER:

This article is based on a true story; however, names, locations, and certain events have been altered to protect the privacy and confidentiality of the individuals involved. Any resemblance to actual persons, living or dead, or actual events is purely coincidental.

The contents of this blog are provided for information purposes only. They are not intended to replace clinical diagnosis or medical advice from a health professional.