Reading, Writing and Dementia

Dementia haunts us as we age, more than almost any other affliction. Losing the ability to be coherent, to read books, to tell the story of your life, these things make us fearful. But as we pass those milestones, 50, 60, 70 and on, which of us has not thought of what might happen? And as we experience those so-called senior moments, who has not wondered if they are increasing in frequency? At the moment I am fortunate that no one I am close to is suffering. Words, reading and writing them, have therapeutic effects I know. So I did a little research and quickly found that words can change lives for those suffering from dementia.

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Reading and dementia

Get into Reading, organised by The Reader Organisation, is a nationally acclaimed project, a positive health and social care intervention that has been adapted for dementia groups. Two key features of the intervention are the emphasis on serious, ‘classic’ literature, and reading aloud followed by open-ended discussion. I like the determination not to dumb down the material.

Short poems work well for people with dementia it has been found. This is probably because the language is more compressed and striking than prose; they are often contained on one page. Many of the participants in the groups studied were of the generation that learned poetry by heart in schools and even those with the most severe dementia could recite poems they learned at school.

The Reader Organisation has researched the effects of Get into Reading with people suffering from dementia and found

  • improved mood for 86% of readers
  • greater concentration for 87% of readers
  • increased social interaction for 73%
  • less agitation for 86% of readers

‘Isn’t it funny? We come in with nothing and go out with all these thoughts,’ said a reading group member, living with dementia, from Devon.

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Writing and dementia

I came across two projects.

Dementia Authors’ website in our own words was established in 2006 but I couldn’t find out if the project is still active. The process involved Anthea McKinlay, writer-in-residence, assisting the authors to write their care home story book. The gradual approach appears to allow the dementia sufferers to build up their contributions.

A second project is Living Words, run in association with English PEN. The link takes you to a video on the website, showing how the project encourages individuals to develop their own poems. ‘There is a goldmine of words to stir something up’.

You can read a poem written by a participant on the English PEN website here called I’m not used to anything like this.

The therapeutic power of words seems to be without limits. For prisoners asylum seekers and refugees, for individuals …

 

An event

Dementia and the Power of Words at Free Word Centre, London EC1R 3GA on Wednesday 12th March 6.30 – 8pm. Details on the English PEN website here. I wish I could go and hear about the experiences presented on that day.

 

 

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11 Comments

Filed under Reading, Writing

11 Responses to Reading, Writing and Dementia

  1. Eileen

    Interesting stuff – good research Caroline.
    Approaching this from another angle, I am writing a reflective account of living with my mother who had dementia. This is for a case study for a book on ageing. This is a powerful experience and I can only do it in short bursts. I started this writing when I was on a course at City Lit called ‘Inklings: writing your self’. I was surprised how vividly it brought back all the wonderful memories of my mother as well as all the sad ones. Extremely therapeutic.
    Love, Eileen.

  2. Anne G

    How timely that you should write about this today. An hour ago, I received and email from one of my brothers saying that he’s just had another ‘funny turn’ and he’s feeling rather confused…. he had heart surgery recently and has had another episode like this a few weeks ago. Quite apart from the enormous shock of it happening to such a close relative, it shakes my general sense of well-being at this stage in life as a recently and comfortably retired woman.
    if early dementia is confirmed, I will point him towards some of your references.

  3. Rose O'Sullivan

    That’s really useful Caroline – thank you. Rose x

  4. Caroline

    Dear friends,
    Your comments remind me of how difficult it is to be close to someone suffering from dementia; the condition takes its toll on carers and loved ones as well as it main prey.
    I could only write about this very dispassionately. But fearfully.
    And there are some music projects, singing in particular, which have enabled joyful participation by people who have not been reached in other ways.
    Anne – I hope the news on your brother is better than you fear.
    Love Caroline

  5. Marianne Coleman

    Good to get some positive and uplifting news about how to alleviate some of the confusion of the dementia experience. Music seems to be very positive too. My mother in law who is in a very bad state – well beyond being able to read anything at all, managed to join in a chorus of ‘Away in the Manger’ sung by her grandsons at Christmas. She remembered all the words. On most visits she is either not speaking at all or is unable to follow a sentence through to the end.

  6. Interesting post, Caroline. I was aware of the benefits of music for people with dementia but didn’t know about the reading and writing. Sounds good.
    Everybody: do look out for Elizabeth is Missing by Emma Healey, a novel due out in June (apologies Caroline if I’ve mentioned it before but I’m raving about it!) http://annegoodwin.weebly.com/emma-healey.html

  7. Thank you Caroline. I never knew that words could be so therapeutic. I will be forwarding your post to a friend of mine, whose Mom has dementia.

    • Caroline

      Hi Diane,
      I hope your firend’s mother can still be touched by words – reading them or writing them. Such a cruel condition.
      Thanks for the comment. Please visit again soon.

      Caroline.

  8. This was such good news for me, because I am close to that someone. My mother was always a big reader, and even as an adult, when I would go home I would bring back books she had read over the summer. I always had the bestsellers from last year going over the winter. Last February she was diagnosed with the dreaded A-word, which her mother also suffered from. We still talk about the books we are reading, and sometimes I go out of my way to read the book she is reading. It’s a connection I will hold with her as long as I can. As I hope my children will with me, no matter what condition I end up in.

    • Caroline

      Hi Paula, your mother is fortunate to have a bookreading and loving daughter. I hope that reading continues to provide that important connection for you both.
      Thanks for visiting the blog, hope to see you commenting here again soon.
      Caroline.

  9. Thanks Caroline, This is a wonderful post. The power of words to make connections. I’m so pleased Anne Goodwin linked to this in her latest post. It is too important a message to be ignored.

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