Social life in advanced dementia

Social life remains a need for everyone who has dementia even until the final palliative moments at end of life. They may have profound impairment but we can stop it becoming profound disability if we stimulate social life with them.

We are social beings. We need and crave contact with others. Our entire make up is geared to interaction. We have language to express our inner experience to others. We crave to be understood by another who recognises us. We know this by paying attention to the relief that floods us when someone really understands us, gets us.

Social life is talking, holding, touching, listening, looking at each other, stroking, kissing, massaging, turning your head to look. All these small actions are what we might call micro-behaviours and if we pay attention to them in the person in our care we can see the small indicators of a desire to make social contact, to connect, bond with us.

The person with dementia lying in a chair without verbal language, unable to walk, toilet themselves, dress themselves, or eat independently, may crave social connection just as much as you and I do. Let’s look for the small micro-signs that tell us they are wanting to be connected.

Perhaps they are unable to show us even small signs. However, when you make the contact watch for their response. This response can be a micro smile, eye-contact, head-turn, flinch or flicker of movement. This is social response to our approach and contact. Engage and sustain your contact and you will notice small signs of change, lower stress, less agitated movement, less calling out, less moaning and groaning. Perhaps you may even notice signs of engagement now, sustained looking where there were closed eyes.

We can meet and engage successfully with the person with such profound impairment. We can stop it becoming profound disability if we make the connection with them and stimulate social life with them.


German translation of “Hearing the person”

I am very pleased to let you know that “Hearing the person with dementia” is to be translated into German by Verlag Hans Huber, a Swiss publisher. This news came today from the UK publisher Jessica Kingsley Publishing.

Sales continue steadily throughout the world and it remains an easy to read help to families and paid caregivers who struggle with knowing how to communicate with people living with dementia.

Thanks for all your support over the past year in promoting the book to the many people worldwide who have bought it.

You can purchase it in English from our webstore

I will let you know when the German translation is available. If you want other language versions to be produced please contact the publisher Jessica Kingsley


Behaviour is a form of communication

 As Richard Ward suggests: “Irrespective of the severity or nature of impairment, a person with dementia will seek out and establish a means of self-expression and thereby make every effort to maintain a relationship with the world they inhabit”.

 What are the people in your care doing that is their way of communicating their inner experience to you? What are they saying to you?

Life Matters Radio National talks dementia with Bernie McCarthy

Download this mp3 file (link below) to listen to Bernie McCarthy talking with Richard Aedy on Life Matters on Radio National today. They are discussing Bernie’s recently published book Hearing the person with dementia: Person centred approaches to communication for families and caregivers.

Radio National interview 25052011

Anxiety gets in the way of talking

Have you ever noticed how anxiety gets in the way of expressing yourself fluently? Ever sat in an interview and frozen up to the point you knew you were talking nonsense and couldn’t do a thing about it? You want to say something really important and you clam up, freeze. Words don’t come. Mind numbing silence fills your head. Several minutes later when you are calm the words flow easily and fluently. And you beat yourself up for being so frozen.

Anxiety causes our verbal brain centres to cease working efficiently and it take considerable effort to manage the anxious thoughts that interfere with saying what we want to say. The verbal centres are located not far from the emotional areas in the limbic system of the brain, so emotional upset interferes with verbal expression. When we are relaxed we find the words easily but in front of an audience or in an interview the words are more difficult to produce. Anxiety gets in the way.

The fight or flight syndrome so often talked about is helpful here in understanding why it happens. When we are under threat it is not so helpful to talk your way out of it but more helpful to run or fight. Talking is a relatively modern human ability and our brains haven’t caught up with the effect of thousands of years of running or fighting.

It is worth noting that the anxiety literature also recognises “freezing” as the third option that common let occurs when people become anxious. Some people report such experiences when confronted with overwhelming trauma such as rape or other physical attack. Freezing is our way of staying still and maximising our chance of survival in the face of a marauding foe that is skilled at detecting a moving prey. Freezing can keep you alive.

However, to come back to our theme of the effect of anxiety on verbal skills, freezing can interfere with modern social function when we want to keep talking when we are anxious.

There is  useful information on  social anxiety on many of the anxiety website via google. One you could try is:

The more relaxed you are the better your words will flow. Several things are important to maximise your fluent speech if you know you are likely to be anxious and you know it may affect your performance:

1. Rehearse what you are going to say on your own. Then do it with a friend whose opinion you value. Ask for feedback. Do it again.

2. if you can visit the location so you are familiar with the situation. Walk up to the podium if you are speaking in front of a group. Check it out.

3. Be clear about the self-talk that chatters in your head. Is it undermining you or helping you? You need reasonable talk that is realistic and balanced. Find a statement that helps you to remain positive and realistic. Avoid being overly positive in your thoughts because that can be just as much of a problem as overly negative thinking.

4. Calm your physical signs of anxiety by breathing slowly and evenly for several minutes at a time. This helps in keeping oxygen and carbon dioxide levels in balance. Over breathing or shallow breathing can make you dizzy.

5. Keep up your usual activity so you avoid disconnecting from the world around you and getting lost in your own head. Phone a friend if need be.

Do you find these suggestions helpful? What do you do to manage anxiety or keep your verbal skills going when you feel anxious?

This new website just went LIVE today

Our new website just went LIVE today after more than a month off air! It has been a period of quiet work in the back room making it all function and it is in a simple form today so we can build it into the site we want and that will give you the service and products you want from us.

Try the new shop and view the products we have been working on. Let us know what you want if you don’t find it there.

Also let us know if something doesn’t quite work as it should on the site. We have tried to get it into a working state and will add pages and information so everyone can use it easily.

Tell us what you think by leaving a comment. Its interactive now!!

Family input – worth its weight in gold

I have had the pleasure of listening to family members talk about their experiences of having a relative in aged care. It has been inspiring and concerning. Today was the concerning bit.

I listened today to a son talk about visiting his mother and watching a staff member ignore an old lady nearby who was in obvious distress in her fallout chair and calling out for help. He saw the same staff member walk passed twice and not offer help. He became concerned for his own mother. While she can look after her own needs now, what will happen if she becomes more incapacitated and is unable to protect her own interests. He is worried now. And rightly.

It is a small thing seemingly but it shows a lack of compassion and empathy from the staff member. I had watched earlier in the day and saw the same person doing the same thing so I knew he was right in his observation. What concerns me is that apart from the distress caused to the lady in the chair, his trust in the care offered by the facility has now been damaged and he has moved closer to making a complaint. The next time is happens he might not be so patient.

Staff, please be careful of your actions. Visitors note what you do and don’t do. They see your care and lack of it.  You may be busy but not so busy you become an uncaring robot. Always be aware of the feelings of the person you are caring for. How do they feel right now. The noise they are making has a reason. Look beyond the noise and ask yourself how they are feeling and what it means that they are calling out for help.

Behaviour is communication

Behaviour is a form of communication. As Richard Ward suggests: “Irrespective of the severity or nature of impairment, a person with dementia will seek out and establish a means of self-expression and thereby make every effort to maintain a relationship with the world they inhabit”.

This relationship attempt may be in the form of repeated questions to you, clinging, or it may be to other people in their environment in the form of physical intimacy. This can be concerning for others but it is a legitimate and reasonable thing for the person to do. However, as with all behaviour it must be safe for others. If this is not the case and is imposed on others people then it must be managed in a skillful way so that everyone is maintained in a positive emotional state.

A useful book that can help to put sexual behaviour in a sensible light in aged care is this one by Barbara Sherman: Sex, Intimacy and Aged Care

What are the people in your care doing that is their way of communicating their inner experience to you? What are they saying to you?

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New book contract – Hearing the person with dementia

I have just signed a contract to write a book on communication with people living with dementia with Jessica Kingsley Publishers in the UK. The book is almost finished and will likely be out in 2011.

It will have a person-centred focus on valuing the person in your communication and attending to those small and meaningful signs that tell us what the person means when they no longer have words at their disposal. It will also address teh practicalities of communicating in times of difficulty, when stress is high between you and the other person both in residential and in community home care situations.

I will give you notice when it is launched.