How to Survive Caring for Dementia

The role we play as caregivers when dealing with someone with dementia
and managing our expectations

Oftentimes I hear people referring to dealing with someone with Dementia is like dealing with a child. It could not be further from the truth. They have not reverted back to being children, although I can see some of the similarities. There is a fundamental difference and an important one to understand because it will likely change how you manage your mindset as a caregiver. It’s the impact of your words, your actions that will affect how a person with cognitive decline reacts to you and their environment.

Learning to be autonomous vs losing their autonomy

One of the fundamental differences between a child and a person with dementia is that a child is learning to be autonomous while a person with dementia is losing their autonomy. Children are growing and learning every day. They are sponges – their experiences, obstacles they face, challenges we impose on them help them develop and grow. They are ADDING to their central processing unit called their brain. Individuals with dementia or other forms aging cognitive diseases is, in fact, working in the opposite direction. They are not building or developing their brain but rather losing or SUBTRACTING knowledge from their brain.

“They are not building or developing their brain but rather losing or SUBTRACTING knowledge from their brain.”

Tree in shape of profile losing leafs symbolizing dementia

Focus on the task at hand

One of the most frustrating moments I have felt is trying to get my loved one ready for an appointment. I could feel the anxiety of being late rising. As much as I try to sound patient and smile, the stress of where we have to be and the difficulty of getting there is in the air.  The rational brain takes over and trying to reason with the person starts to come into action. Reasoning with someone with dementia does not work.

They are in the process of losing that skill set and do not have the ability to understand cause and effect. Understanding that you cannot expect them to reason or absorb the outcome of their actions is key. Rather focus on the task at hand (eg. getting dressed) and not the end result (the appointment). The single-task method will often get you where you have to go faster while maintaining a positive emotion for both you and your loved one.

Aligning our expectations with their capabilities

When we deal with children, repetition and constant reminders help them learn. Memory-joggers, quizzes and explanations are effective. They are able to retain information, retrace their thought process and recall information. Those suffering from dementia do not process the same way. Reminders are ineffective as the disease progresses. They are losing their ability to remember and therefore using a similar approach we would as with children can lead to an increase in anxiety, feeling inept, frustration and depression. As a caregiver for someone with dementia, your role is not of a teacher but one of a mood creator.

Memory loss and mood management

The one thing I have noticed over my years as a caregiver is that my mood often dictates the direction the caregiving will go. When I walk into a room enthusiastically, happy to see my loved one, big smiles and heartfelt happiness, the response I get is often the same – even if it doesn’t start off that way, the behaviour quickly changes and the atmosphere becomes more positive. I assume the role of a mood creator. Walking into a room with concerns, stress, agitation, will lead the person with dementia in the same direction. They are not knowledge sponges but mood sponges.

If you’re not sure if your loved one is actually declining, you can always try these tests at home.  Being aware and emotionally prepared is undoubtedly one if not the best tool in your box to manage the overall situation.  Managing mood and expectations is ultimately our responsibility. Look for something fun, beautiful, joyous when walking into a room with someone with dementia.  A big smile and a hello will lighten up the atmosphere and ultimately lead to a caring and pleasant experience for all.

Karine Saba, co-founder of Care4giver, Ambassador for Hope for Dementia and natural caregiver for parents with dementia for over 14 years. 

This piece was inspired by Judy Cornish and her blog: How to Make Dementia Care Less Frustrating

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