‘Never Give Up’ – Finding Ways to be with People in the Later Experiences of Dementia

I am often asked “What can we do with people in the later stages of dementia?”  For me, this is probably the wrong starting point as the real question is “How can I learn to be with people who are often not mobile, not communicating verbally and don’t relate to all the usual ‘activities’?”  I am a high energy person who loves words, and so I still find connecting with people with very advanced dementia doesn’t play to my strengths.  I also like positive feedback and for people who are often quite withdrawn, you are not necessarily going to know whether your efforts to connect have made a difference or not. I have learnt that, rather as you fine tune a radio to the right channel, I need to slow my normal, busy pace and trust that at some deep level I will find a way to reach someone.

Finding the right clue

Many years ago, I visited Doris who spent most of the day in bed in her room.  Her eyes were usually closed and she rarely responded to anyone.  I had the advantage of having known Doris when she was living in her own home and she had been a demon crossword puzzle enthusiast.  I therefore decided to read aloud the clues in a daily newspaper crossword when I sat beside her bed.  For several weeks, she didn’t really appear to even know I was there, but one morning she squeezed my hand when I paused from speaking as if she wanted me to continue.  The following visit, I read out a clue, ‘bird of prey’ – five letters, and she opened her eyes, smiled and said ‘Eagle’ in a clear, strong voice.  From then on, I had several moments when she would participate in her own way and had her eyes open and bright for the whole of my visit.  Colleagues reported, she was also often more alert for the rest of the day. 

There are some key learnings from this story:

Knowing someone’s life history and interests becomes even more critical.  Crossword clues were something familiar and enjoyable to Doris, who had done them regularly for many years. Deciding what kinds of things to talk about or read will be influenced by your knowledge of the person – for one person it might be a book of prayers, for another it will be a book of planes. Topics and words that relate to someone’s core identity will tap into memories and provide comfort.  The human voice reading aloud also has a rhythm and tone which can reach someone, especially as it is well known that hearing is the sense that appears to remain the strongest to the very end of life.

– it takes time for a person with very advanced dementia to even be aware we are there.  In a busy care environment, interactions are often all too brief, so just as the person with dementia is starting to connect, the carer has moved on and the moment is lost. 

Try and set aside 10 minutes to sit and be with someone and trust that your presence will at some level be providing companionship and reassurance.  Success might be measured in small moments of connection such as a smile or a twinkle of an eye, but these are no less important. The central message of this story is not to give up on the people in care environments who are often neglected because they are silent or sleeping.  This doesn’t mean that there isn’t a world inside each person which is waiting to be awakened if we take the time to try.

Consultant and Trainer

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