3 Powerful Myths about Dementia

By Jane Verity ©Dementia Care International

Several powerful myths exist about dementia – 3 in particular can stand in the way of improvement and are harmful to the relationship between you as the supportive partner and the person with dementia. The following myths are important to dispel.

Myth One: People with Dementia Become like Children

People with dementia are not children and should never be treated as such.

The danger of thinking that a person with dementia becomes like a child is that it is likely to affect your whole attitude and way of speaking and you end up talking down to the person as if he or she were a child. For example, the person may have done something really great and you want to praise them. However, if at the same time you think of the person as a child you end up saying: Weeelll Dooonnne! Youuu arrre sooo cleeever! You stretch out the words as if you were speaking to…a 3 year old!

The problem with this approach is that the person with dementia is likely to be super sensitive to any future experience where you talk down to him or her and most likely to respond with strong disapproval, even becoming angry at you. This response may upset and confuse you because, after all, you have just given praise and you would expect a better response.

There is a vast difference between children and people with dementia. People with dementia have lived a long life and carry a backpack full of life experience, history and wisdom. A child does not have this rich knowledge or experience.

Remembering this can help you keep people with dementia in high regard and maintain your respect for them. This will in turn affect the way you speak. When we communicate we provide meaning through our tone of voice and body language. What we think is reflected in the meaning we give our words, so if you give the same praise using exactly the same words as before but this time thinking of the person with respect – as an equal – you are likely to say them in quite a different way, ‘Well done! You are so clever! These are exactly the same words but a very different way of saying them – sending two completely different meanings.

One thing that people with dementia and children do have in common is that neither of them are ruled by their social inhibitions. The child has not yet learned these inhibitions and the person with dementia has now been freed of them. This lack of inhibition allows both to experience the same kind of joyous spontaneity and appreciation. Dementia lets us see another side of the person as it allows them to get in touch with the playful child we all carry within us. This is why a person with dementia may pick up a cute teddy and play with it with great delight.

When we experience such a situation, it is not up to us to be the authority or the judge who decides if this behaviour is appropriate or not. This is a time to let the person with dementia be the best judge. So instead, look into his or her eyes and read their expression. Also read their facial expression and the feedback from their whole body. If they smile, laugh, clap, sing, dance or show any other signs of enjoyment how can you then say that it is inappropriate for the person with dementia to enjoy a cute teddy, doll or another soft toy?

If we judge playful behaviour as inappropriate and take away the soft toy, in order to preserve their social skills, we kill their spark! However, when we support their spontaneous joy we create opportunities for magic moments together.

When social inhibitions lift it also means that people will say and do whatever they think and feel. There is no censorship and therefore nothing to stop their thoughts instantly becoming actions.

Let me give you an example from my experience with Mum.

One day, we walked into the hairdresser and saw a lady having her hair rolled in curlers. However, her hair was so thin that you could see through to her scalp. Mum took one look and in a pretty loud voice said, ‘Why is that woman having her hair done? She’s got no hair!’

This was very embarrassing for everyone, but Mum was simply saying what she thought. To be totally honest, it was what I thought too. The difference was that I still had my social inhibitions to prevent me from saying what I was thinking and Mum did not.

Although I wished the floor would open and I could disappear from the scene, I knew Mum did not mean any malice. Instead I put my arm around her and gave her a big kiss while I whispered how very lucky we were to still have our hair.

Why it is that we really treasure spontaneity in our children yet when it comes to a person with dementia, whose social inhibitions have lifted, we feel a need to protect them from themselves.

We believe it is important to be aware that how we react to the behaviour of the person we support will determine how other people interpret that same behaviour and, therefore, how they will react to the person.

Imagine your local supermarket. You are out shopping. It is 3 p.m. on a normal weekday. As you walk around you hear several children screaming. You finish your shopping and walk to the checkout queue. In front of you are two mums, each with a small child in their trolleys. Both children are screaming their little heads off.

The mum closest to the checkout pulls her little darling into her and hugs and cuddles this little one, all the while talking in soothing words and blowing gently on the child’s forehead.

If you are anything like me, you stand to the side to see what is going on and, without even being aware of it, you pick up on this mother’s genuine love, care and concern. Your facial expression – in fact, your whole body – is likely to become a reflection of the mother’s reaction.

The second mum and her screaming child are a very different story. This mum points her finger at her child and yells with angry voice, ‘I’ve had enough. You have been begging for jelly babies all the way around the supermarket. I’ve said no and I mean no – you are just so naughty and spoilt.

Again, without being aware of it, you pick up on this mother’s anger and disapproval. Your facial expression and whole body are likely to mirror that of the mother’s angry reaction this time also. You may even find yourself looking sternly at the little child while thinking: So it was you who screamed all the way round the supermarket, you spoilt little kid.

From this scenario, can you see, hear and feel how powerful these two mums’ reactions are in regard to influencing your interpretation of the screaming? You hold the same power every time you react to the person you support. Your reaction will influence the way others interpret their behaviour. You hold the power to stand up for the person and support him or her even when their behaviour is uncharacteristic or unusual according to social norms.

By standing up for the one you support, you not only help the person continue to be accepted, you are also a part of changing society’s attitude to dementia. You can help educate relatives, friends, neighbours, shop keepers, bank tellers and the people in your community to show empathy and respect towards people with dementia. You will also help create a tolerant, inclusive society that respects them for their spontaneous behaviour.

Myth Number Two: People with Dementia Don’t Know What They Like, Need or Want!

Sadly, this is a stigma attached to people with dementia; however, it is only a myth and one that needs to be dispelled. If you hold this myth as truth, it will affect your attitude towards the person you support at a deep, subconscious level with devastating effect for both the person living with the diagnosis and for you the supportive partner.

It will encourage you to take over from the person. You are likely to begin to speak for the person and respond on their behalf even if they are present and able to do so themselves. You are likely to begin to make choices for the person with dementia despite the fact they are perfectly capable of doing so personally. You may even find yourself saying words to the effect, ‘You don’t want that – put it back!’

The truth is that because the social inhibitions that regulate responses lift, people with dementia are more in touch with their intuition and the experience of what they feel and what they think. They have no censorship checks before doing or saying something. They just do it or say it.

This means that if they like what you do or say they will spontaneously show their approval, validation and love. On the other hand, if they don’t like what you say or do, they will instantly show and tell you in no uncertain terms.

The delightful thing to keep in mind is that the person with dementia never talks behind your back. Any disapproval is always delivered to your face. You know what you’re dealing with. That can be stressful at times. Just remember outbursts are not meant to hurt or harm you. They simply express a need that has not been fulfilled.

It is important to keep in mind that you can find out what the person with dementia would like, need or want.

If the person is still speaking in words and sentences that you can understand, it is really easy because you just need to ask what they prefer.

Here is a hint. Never ever ask: What would you like? We have all been systematically taught that this is the most respectful way to ask a question when offering a choice; however, you will probably agree that more often than not when you ask this question to a person with dementia…you get a NO. So, instead, here are some helpful suggestions.

If you are offering a choice, such as which shirt the person would like to wear – simply ask with warmth, energy and encouragement in your voice: Today, which shirt do you prefer? If the person is unable to choose, you need to narrow down the choice. Pick a few favourite shirts and ask the same question until the person chooses a shirt.

If the person’s language has changed and is now a combination of gobbledegook and words and sentences that you can understand, I suggest the following in regard to picking a choice of shirt.

Pick 2 choices only, such as a red and a blue shirt. Now hold one choice – the red shirt in your right hand and the other choice – the blue shirt in your left hand. Then ask again with warmth, energy and encouragement in your voice, ‘ Today which do you prefer… the red shirt (while you move you right hand with the red shirt up and down) or …the blue shirt?’ (while you move your left hand with the blue shirt up and down). Now the person only needs to point to the preferred shirt or pick it from your hand. You can do exactly the same in regard to tea and coffee, potato or rice, or any other choices small enough that you can hold them in your hands. It is a simple approach that works

Myth Number Three: People with Dementia Can’t Learn New Things!

This powerful myth can stop us all from even attempting to encourage the person with dementia to learn new things. And if the person living with the diagnosis also believes this myth to be true, he or she is not going to try to learn new things.

There is a motivational saying: If you believe you can or if you believe you can’t…either way you are right.

The truth is that people with dementia can learn new things as long as they are personally important to them. Contrary to many peoples’ beliefs, people with dementia can also store new information in their long term memories as long as the memories are out-of-the-ordinary, colourful, humorous or highly emotional involving all their senses.

Here is true example of how people with dementia can learn something new when it is really important to them.

Glenda had been moved into a dementia specific unit. She had moderate dementia. She did not like being there and wanted more than anything else to get out. But Glenda was in a secure unit with a coded keypad lock on the front door leading to outside.

Glenda soon discovered that if she wanted to get out she had to learn the special code. So every time someone left the unit she carefully watched while they keyed in the special combination of numbers and letters. She worked hard to memorise the code and one day she had it. At handover time, when there were not many staff around, Glenda put on her hat and jacket, pressed the special code that opened the front door…and voila!… She was free!

Most nursing homes have their own Glenda story. It is one that clearly highlights how people with dementia can learn new things; even a complicated code consisting of both numbers and letters designed to keep them in. Imagine what else they can learn when it is important to them, and if we support and encourage them to do so.

People with dementia definitely don’t mobilise the brainpower to remember if their choices lack meaning and importance. This might be helpful to keep in mind. If you wish to help people learn new skills or information, make sure you link it to something that they perceive as important and meaningful. It is usually not enough motivation for them to learn new things just because you have a need for them to do so. They need to perceive it as their own need.

People with dementia can also store new information in their long term memories as long as it is out of the ordinary, colourful, humorous or highly emotional – involving all their senses.

For example, when you think back to any memorable event you can vividly recall it and, suddenly, it is like you are right there again. Think about September 11, 2001 when the 2 aeroplanes flew into the Twin Towers of the World Trade Centre, which later plunged to the ground. For many people this was a highly emotional experience involving all their senses. If I were to ask: Where were you when you heard or saw the news? Who was you with? What were you doing? I am sure you can recall the answers quite clearly. You did not need to write this experience in a diary or rehearse the images. They were already stored in your long term memory.

On a lighter note…Whenever you experience anything that is out of the ordinary, colourful or humorous you automatically store it in your long term memory. Just think of anyone you’ve have met who dresses quite unconventionally in loud, colourful clothes. These memories provide vivid pictures, smells, sounds, tastes or feelings connected with this person and what happened at the time.

Here are the 5 points critical to storing long term memories.

Any experience that is:

important for the person
out of the ordinary
colourful
humorous
highly emotional – involving all the senses

This applies to everyone with or without dementia.

The above information is important also because it can be used at so many levels to help improve the memory of people with dementia.

Myth One: People with Dementia Become like Children

Myth Number Two: People with Dementia Don’t Know What They Like, Need or Want!

Myth Number Three: People with Dementia Can’t Learn New Things!

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