From Parenting to Caring Support (Public article)

Public article

By Jane Verity © Dementia Care International

Have you ever:

  • corrected a person with dementia only to end up in a heated argument?
  • set boundaries and limits for the person with dementia only to experience great frustration and maybe even anger because they completely ignore your directive?
  • told the person with dementia that what they’re talking about is not real only to find they become greatly upset and persist in the belief that they are right?

If any of these experiences sound familiar, the following information may be of great support. This article will show you how you can begin to think differently about the way you care and how to become more creative in your approach.

The Parenting Approach

When you find yourself suddenly caring for a person with dementia, you are likely to take on the role of a parent quite naturally. The person needs you to take care of them, so you instinctively activate the parenting approach. However, using this approach in the care of someone with dementia is not going to work. The parenting approach does not translate to dementia for two main reasons:

  • people with dementia are not children even if some of their behaviour may appear so.
  • the brain of a child is a developing brain, whereas the brain of the person with dementia is a changing brain experiencing many obstacles.

The guidance and behaviour modelling that works so successfully with a growing child will only cause great frustration and burnout when transferred to a person with dementia.

Challenging the Child-Myth of Dementia

There is a strong myth that people with dementia become childlike and that they don’t know what is best for them. Not only is this a myth, it is also an unnecessary stigma.

Though the behaviour of a person with dementia may resemble that of a child, the two are worlds apart. The social inhibitions, which normally regulate our responses, lift in a person with dementia so that they may share the same spontaneous joy and appreciation of a child. However, it is crucial that you continue to see the person with dementia as a whole person, one who has lived a long life, contributed to society and who carries a backpack filled with life-history, experience and wisdom.

If you fall into the trap of thinking of them as a child, it will affect the way you treat them, which in turn will affect the responses you get back. Thinking of the person with dementia as a child will ‘program’ your whole approach. It is likely you will talk to the person the same way as you would talk to a child and they are likely then to become defensive and respond with anger.

Some of the Brain Challenges of Dementia

The Hippocampus

The person with dementia may experience difficulty in learning new information and mastering new skills because of changes in an area of the brain called the Hippocampus where new information and experiences are translated into long term memory.

Please note: I only talk about difficulty in learning new information as it is possible to help the person learn new skills and take in new information – it simply needs a different approach. For more information please see the article, ‘How to improve memory.’

Ingrained Memory

As the brain develops, the nerve pathways that are used most frequently form stronger and stronger connections in the brain. Complex skills are developed, such as walking, talking, reading and eating. These consist of several sequences of tasks that we don’t need to think about as we do them automatically. They become our Ingrained Memory.

When brain changes occur in the person with dementia, scar tissue begins to block parts of the nerve pathways. This may stop them in the middle of a familiar task, such as brushing teeth, because they can’t remember how to squeeze the paste.

Later this scarring may also affect some of the early ingrained memory, such as the ability to know when to go to the toilet. The brain may not ‘remember’ what the urge means resulting in incontinence. One way to remember how skills are affected by the changes in the brain is: We unlearn the opposite to how we learn.

Skills learned later in life may disappear completely as they have not been reinforced as strongly as those learned earlier in life.

3-Dimensional Long-term Memory

Events that we experience intensely are stored ‘3 dimensionally’ in our long-term memory. These intense memories have to be out-of-the-ordinary, highly emotional and involve all our senses.

When you think back on such an event you can vividly recall it and, suddenly,  it is like you are right there again. Just think about September 11, 2001 when the World Trade Centre was attacked and the twin towers plunged to the ground. Where were you when you heard the news? Who were you with? What were you doing? I am sure that you can recall the answers quite clearly!

These 3-dimensional memories can be triggered by smell, emotions, songs, thoughts, pictures, tastes and touch etc. They are stored in many places in the brain at the same time and are not easily damaged by brain changes. People with dementia still have access to these memories, both the fond and those that are not so happy.

This hopefully helps explain why a person with dementia can vividly recall events from the past in detail, yet, they are not able to remember today’s date or the name of the person they are with.

The key to unlocking the uniquely rich person and skills within a person with dementia is to help them access fond 3-dimensional memories. This is why reminiscence and sensory stimulation work so well with people with dementia.

Shifting to Caring Support

As already mentioned, your internal parent, which has been so strongly ingrained over a lifetime, is not your best friend when it comes to caring for someone with dementia.

You need to be in the moment and use your empathy to find out what they are attempting to communicate. You need to pick up where they stop and show them the next step. However, remember, they don’t need you to take over. Examples could be to button the top button on a shirt so that they can successfully complete the buttoning. It could be to squeeze the toothpaste on to the toothbrush, so that they can brush their teeth. To set them up for success, they only need you to guide them through that momentary blockage.

They need you to truly listen to what they are trying to communicate with all their senses and body, in words, sounds, facial expressions and actions.

People with dementia generally don’t see themselves as needing help and they don’t like it when you say that you are there to help them. I strongly suggest you change your language and, instead, simply say : What if I give you a hand with…? Or What if I start you off and then you can do the rest? 

The more we build our foundation of care using a person’s rich past, interests and abilities the better an outcome for everyone. I wish you the best of success in shifting your thinking from parenting to providing caring support.

This article has been adapted from Cathy Kehoe’s inspiring work on the issue of changing perception from parenting to providing care called: Changing our Minds. Cathy Kehoe is SBIRT Program Coordinator at the Wisconsin Bureau of Mental Health and Substance Abuse Services, USA. We sincerely thank Cathy for her kind permission for us to share this brilliant and powerful way of thinking. We do hope it gives you new understanding and insight that will benefit both yourself and the person or people in your care.