• Learning as we go 19 February 2018 | View comments

  • 19th February 2018 | By David Jolley

    Next month will see the second anniversary of our Dementia Conversations group. This month we met on Shrove Tuesday but did not brave the hazards of pancake making. It was the day before Valentine’s Day – so we did touch on romance with red felt hearts and the biggest heart-shaped chocolate cake.

    As people gather we make sure the room is warm and welcoming. There is tea, coffee or juice. This week the warm drinks were particularly welcome as the temperature outside was barely above freezing. Ros Watson opens and encourages people to share their thoughts and stories. This week we were joined by Louise and Liz from TIDE: http://tide.uk.net/

    We learned that TIDE has evolved from the carers’ part of Dementia UK. It now has a life of its own and is supporting carers and providing training so that they can speak about their experiences with confidence. This is good for the carers and provides education in various settings and informed representation in committees and lobbying opportunities. Their presence released powerful stories from people who have been encountering crises in their care situations. We learn how services can be contacted and respond. We see how reorganisation of services has meant they address extensive areas of Greater Manchester and seem to believe that when a bed is needed, one which is 15 miles away is just as appropriate as on nearby. These experiences also bring us to the realities and practical application of the Mental Health Act.

    Revision of the Mental Health Act is underway, as is consideration of a better legal and service framework for people who lack capacity by virtue of being ‘of unsound mind’, but for now we have Section 2 and Section 3 of the Mental Health Act and DoLS. There is nothing like using things for gaining an understanding of them.

    Tasked with advising on what to say to general hospital wards about the needs of carers when individuals with dementia are admitted, we were able to draw on personal, sometimes painful, experiences. These were the key points raised: Empathy. To be fully consulted – Daily updates. All aspects of discharge. Definite dates. Flexible visiting. ‘This is me’ https://www.alzheimers.org.uk/downloads/download/399/this_is_me_tool

    Safety first. Correct information. Respect. To be heard. Own clothes and possessions. Staff to have an understanding of mental health conditions including delirium.

    Clear communication with the patient. Mirrors, crockery, cutlery, routines.

    Carers to be asked how much they wish to be involved.

    A culture of kindness. A link worker for carers.

    Carers are concerned for their loved one: What have they been admitted for? Will their dementia needs be met? Continuity. Individual likes and dislikes. Not one-size-fits all. Respect. Dignity. Maintain well-being not just treatment of a medical condition. Decent food and hydration. Time to gain and give understanding and reassurance. A Dementia Friendly Ward. Trained nurses. Good signage. Someone for family to talk with. Occupational Therapy.

    • Respect
    • Information
    • To be listened to
    • To be involved
    • To be understood
    • To be offered help with stress and illness
    • To be offered education and maybe training

    Much to be said for asking the people who are living with these challenges – threats to their very being and sense of self – It is a good way of learning.

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