• Exemplary 16 July 2018 | View comments

  • 16th July 2018 | By David Jolley

    The Dementia Pathfinders presentation event at 44 Hallam Street last Wednesday was just as good as it could be. I missed the play reading – Fighting for life https://www.mariecurie.org.uk/blog/helens-fight-for-better-care/179099 taking account of train times and costs – But the message is there and it was great that this was part of the day.

    But there was much to see and people to meet and hear from lunch unto teatime:

    Tovertafel was there to demonstrate the power of its magic lantern https://tovertafel.co.uk/ I would like to have one!

    Arts 4 dementia were there: https://arts4dementia.org.uk/ we know the power.

    Agewell CIC: www.agewelluk.org.uk/ were there – and opportunity to meet up with Sandra who is with them 3 days each week and to celebrate their contact with STAA http://www.staa.org.uk/ and the fabulously creative Sharon Baker. Sandwell may be deep in the Black Country but it shines a light for art as therapy and fun. 

    Unforgettable were demonstrating some of their wares and offering a special teddy in a competition: www.unforgettable.org/ - I bought a book of quiz materials which we have already begun to use.

    Care Home Friends www.carehomefriends.org.uk/ is an organisation I should have known about. The principle of Friends to local parks is dear to me and the application of similar arrangements for care homes, hospitals, prisons etc seems to be an obvious follow on. As I read it the particular organisation here is about linking churches to care homes. This is something I understand but I would be keener on a less prescriptive/exclusive model which starts with each care home/hospital ward – and perhaps has overview from Dementia Pathfinders or the Local Authority – not to exclude faith organisations but ….

    There were other discussion tables too - I did not take them all in. 

    The work of Simon Ball in making an animated film which seeks to interpret the observation of someone who was living with Posterior Cortical Atrophy is quite marvellous – thanks to him and to the family. https://blog.alzheimers.org.uk/research/posterior-cortical-atrophy-see-i-see/

    The Margaret Butterworth awards were presented to four wonderful frontline carers by a husband and wife duo – he with mixed dementia – she being his main carer. The poetry of the situation gave extra meaning to the awards. http://dementiapathfinders.org/mba-2016.html

    Mike Parish and Tom Hughes shared the story of their lives with dementia – overcoming stigma and prejudice with grace and good humour. 

    We met the author of Phoebe and the Hot Water Bottles – now out of print and highly valued - https://www.amazon.co.uk/Phoebe-Water-Bottles-Picture-Lions/dp/0006616828 She now struggles with words but retains her sense of humour and fun – enjoying her own creation as it is read to her.

    All this was brought together by the extraordinary Barbara Stephens – She shared something of her current family life in addition to this devotion to the cause of people with dementia and their families. Let us hope the work can be recognised and supported to extend its influence – so much more real and honest than that we hear about from some other organisations.

    Best of all for me was to hear of the growth of Dementia Conversation on the Isle of Wight – and the spread and penetration of its influence into the services on the island. 

    Days like this are power points from which we can begin to do more – Thanks to everyone.

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