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Living well with dementia - my book launch 15th February 2014


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My presentation for my book launch, to be held in Camden on 15 February 2014. The book is about wellbeing in dementia, and how to promote it.

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Living well with dementia - my book launch 15th February 2014

  1. 1. This version does not include the personal messages by Kate Swaffer nor Norman McNamara to my guests. It otherwise is a faithful record of the talks to be given in Camden on 15 February 2014.
  2. 2. Introduction to Dr Shibley Rahman Queen‟s Scholar BA(1st) MA MB BChir PhD (Cambridge) MRCP(UK) LLB(Hons) LLM MBA FRSA BPP Diploma in Professional Legal Practice February 15th 2014
  3. 3. 3.00 pm Registration 3.20 pm Presentation 1 What do we mean by 'living well with dementia‟? 4.05 pm Coffee and other refreshments 4.30 pm Presentation 2 Strategies for 'living well with dementia‟ 5.15 pm Discussion session 7 pm dinner
  4. 4. Part 1 What do we mean by 'living well with dementia'?
  5. 5. 1. The need to raise awareness of the dementias 2. Forewords 3. Contents of the book 4. What is wellbeing? What is personhood? What is dementia? 5. Practical issues about wellbeing 6. Promoting wellbeing 7. Contemporary challenges e.g. wandering
  6. 6. 1. The need to raise awareness of the dementias
  7. 7. James Murray-White – raising awareness of the dementias
  8. 8. Beth Britton – D4Dementia blog
  9. 9. Personal experience of Beth Britton
  10. 10. NICE QS30: Quality standard for supporting people to live well with dementia It applies to all social care settings and services working with and caring for people with dementia. It should be read alongside the NICE Dementia quality standard QS1.
  11. 11. The “Dementia Challenge” There are 3 dementia challenge champion groups, each focusing on 1 of the main areas for action: driving improvements in health and care, creating dementia friendly communities and improving dementia research. and #G8dementia • • • • • • significantly increase the amount spent on dementia research increase the number of people involved in clinical trials and studies on dementia establish a new global envoy for dementia innovation develop an international action plan for research share information and data from dementia research studies across the G8 countries encourage open access to all publicly-funded dementia research to make data and results available for further research as quickly as possible
  12. 12. 2. Forewords by Prof Hodges (Professor of Behavioural Neurology, University of Cambridge UK), Prof Facundo Manes – Vice Chair of the research group for cognitive and aphasias for the World Federation of Neurology (and the University of Favorolo, Argentina) and Sally Marciano (UK)
  13. 13. Prof Hodges
  14. 14. Thanks enormously to Sally Marciano for her Foreword too.
  15. 15. “I am not an academic but I am a nurse, whose wonderful father died of Alzheimer’s in September 2012. Nothing during my training or nursing career could have prepared me for the challenge that came with supporting my mother in my father’s journey with dementia.” Sally Marciano [Foreword]
  16. 16. 3. Contents of the book
  17. 17. Dedication Acknowledgements Foreword by Professor John Hodges Foreword by Sally Ann Marciano Foreword by Professor Facundo Manes Introduction What is „living well with dementia‟? Measuring living well with dementia Socio-economic arguments for promoting living well with dementia
  18. 18. A public health perspective on living well in dementia, and the debate over screening The relevance of the person for living well with dementia Leisure activities and living well with dementia Maintaining wellbeing in end-of-life care for living well with dementia Living well with specific types of dementia: a cognitive neurology perspective General activities which encourage wellbeing
  19. 19. Decision-making, capacity and advocacy in living well with dementia Communication and living well with dementia Home and ward design to promote living well with dementia Assistive technology and living well with dementia Ambient-assisted living and innovation culture The importance of built environments for living well with dementia
  20. 20. Dementia-friendly communities and living well with dementia Conclusion
  21. 21. 4. What is wellbeing? What is personhood? What is dementia?
  22. 22. “The real value of values-based commissioning” 7 JUNE 2013 | BY EMMA DENT
  24. 24. What is wellbeing?
  25. 25. 1937-1998
  26. 26. Personhood : A standing or a status that is bestowed upon one human being, by others, in the context of relationship and social being. It implies recognition and trust. “We need professionals to work with us, not exclude us and realise we are often the key to understanding the person with dementia” Uniting Carers, Dementia UK SCIE personalisation Whole person care Individualised budgets
  27. 27. Edana Minghella: Pathways to Dementia Diagnosis – “Dementia partnerships” Concerns often not taken seriously Poor experiences in first clinical encounter Some GPs had “ambivalent views” Mixed experiences in postdiagnostic support
  28. 28. Person-centred approaches “Whose Shoes” by Gill Phillips
  29. 29. “I don't believe anyone has any particular "authority" on dementia, apart from the persons who are living with dementia and the people who care for them. Nobody has all "the right answers" in research.” Whose Shoes blogpost Published today.
  30. 30. Lucy Jane Marsters Dr Muna Al Jawad The badges have appeared in Scotland, Iceland, Australia.
  31. 31. Lucy Jane Marsters
  32. 32. Dementia: the diagnosis
  33. 33. Dr Peter Gordon – Consultant Psychiatrist * the discussion of the “timely diagnosis”
  34. 34. Peter‟s message
  35. 35. Dr Neil Chadborn Dr Peter Gordon Dr Avinash Sharma
  36. 36. Prof Richard Ashcroft
  37. 37. “The first thing that struck me is how violent the rhetoric suddenly seems. David Cameron and Jeremy Hunt use the language of war: "fight-back", "stealing lives", "explosion", "shock", "timebombs" and so on.”
  38. 38. “They discuss dementia as if it were both news that we were unaware of and that it is somehow our collective fault for being unaware of it. It may well be news to them, but it is certainly not news to, nor the fault of, those of us who have been dealing with dementia in our families, or fundraising, or trying to get decent quality services.”
  39. 39. Dementia: a medical „window of opportunity‟ for the vascular dementias?
  40. 40. Dementia: a cognitive neurology perspective
  41. 41. Hippocampus/surrounding areas in temporal lobe (Braak & Braak) : significance for dementia of Alz type
  42. 42. Signage for dementia of Alz type
  43. 43. The cognitive neuropsychology of bvFTD (Rahman et al. 1999 Brain)
  44. 44. Prof Facundo Manes, Buenos Aires, Argentina
  45. 45. The „Ebbinghaus Illusion‟ and bvFTD
  46. 46. 1. The need to raise awareness of the dementias 2. Forewords 3. Contents of the book 4. What is wellbeing? What is personhood? What is dementia? 5. Practical issues about wellbeing 6. Promoting wellbeing 7. Contemporary challenges e.g. wandering
  47. 47. End of part 1
  48. 48. Part 2 Strategies for 'living well with dementia'
  49. 49. 4.05 – 4.30 pm Break
  50. 50. 1. The need to raise awareness of the dementias 2. Forewords 3. Contents of the book 4. What is wellbeing? What is personhood? What is dementia? 5. Practical issues about wellbeing 6. Promoting wellbeing 7. Contemporary challenges e.g. wandering
  51. 51. 5. Practical issues about wellbeing
  52. 52. Swallowing
  53. 53. Problems swallowing – Beth Britton D4Dementia blog “The other key factor in dysphagia management is the consistency of all the foods, drinks and liquid medications given to the person with the condition. Powder thickeners are often prescribed to help with this, but it must be remembered that having things too thick is as dangerous as too thin. Too thick and our experience was that it would stick in dad’s mouth/throat, causing coughing.” [From “Hard to swallow” 12 September 2012]
  54. 54. Communication
  55. 55. 6. Promoting wellbeing
  56. 56. Choice and control
  57. 57. Social Care Institute for Excellence • Choice and control are key defining aspects of dignity. • • Withdrawal of respect inhibits choice and control. • Treat people as equals, ensuring they remain in control of what happens to them. • Empower people by making sure they have access to jargon-free information about services when they want or need it.
  58. 58. “Dementia challengers” Lee
  59. 59. End-of-life / SCIE: Jo Moriarty
  60. 60. • Care staff may find it difficult to raise the subject of end of life care, but training and support will help them become more confident. • Making treatment decisions on behalf of another person places an emotional burden on family carers, but care staff can help by informing them about what is happening and what to expect.
  61. 61. Impact on carers – Thomas Whitelaw
  62. 62.
  63. 63. Margaret Kilby - carers’ experiences Matter. 670000 primary carers £8 billion
  64. 64. “Dementia UK”/Jessica Kingsley Publishers
  65. 65. Five key aims Carers of people with dementia: • have recognition of their unique experience • are recognised as essential partners in care • have access to expertise in dementia care for personalised information, advice, support and coordination of care for the person with dementia • have assessments and support to identify the on-going and changing needs to maintain their own health and well-being • have confidence that they are able to access good quality care, support and respite services that are flexible, culturally appropriate, timely and provided by skilled staff for both the carer and the person for whom they care
  66. 66. @yeweestoater
  67. 67. Darren Gormley 2,500+ home visits in 6½ years. “Older people in the media” awards - “Best factual new media content about older people‟s issues‟ - „Best overall contribution to the debate on older people‟s issues‟
  68. 68. Sporting Memories Network Tony Jameson-Allen 2009 Scottish Football Reminiscence Project 2010 Glasgow Caledonian University (contribution to wellbeing, including self-confidence, self-expression, sociability nad enjoyment)
  69. 69. "As Prime Minister, I was lucky enough to attend a number of events at both the Olympic and Paralympic Games and my memories of cheering on our competitors will, I hope, remain with me forever. This is the very reason that initiatives such as the Sporting Memories Network are so valuable and I thank you for your work in this area” David Cameron Prime Minister
  70. 70. Neural substrates?
  71. 71. Episodic recollection of personal events from one‟s own life is referred to as autobiographical memory. During autobiographical recall, spatially and temporally bound information is retrieved and the relevant scene vividly reconstructed. This is accompanied by a feeling of reminiscence, where the self being remembered is the same self engaged in recollection, and the re-experiencing of these memories may elicit strong emotions. (Nathan Spreng, Mar and Kim 2008 Journal of Cognitive Neuroscience 21:3, pp. 489–510)
  72. 72. Smith AP, Henson RN, Dolan RJ, Rugg MD. (2004) fMRI correlates of the episodic retrieval of emotional contexts. Neuroimage. Jun;22(2):868-78.
  73. 73. Music – “Playlist for life”
  74. 74. “Mum sang anything and everything. She was brilliant at harmonising, coming in below the melody and swooping around, and before you knew it you were partaking of something rather fun.” “Mamie Baird Magnusson was a dab hand with the mouth organ too, coming from a time and place where people made their own entertainment. In her Rutherglen council house her dad had a violin and there was an inherited organ too.” [The Scotsman, 2 February 2014]
  75. 75. Dancing - e.g. Dr Guzmán García, improvements in mood and quality of life Gardening - e.g. enjoyable, enables people to enjoy outside spaces, sensory stimulation
  76. 76. Fronto-striatal loops
  77. 77. Innovation
  78. 78. Adoption of innovations (classical diffusion theory of Rogers)
  79. 79. Assistive technology The term 'assistive technology' refers to 'any device or system that allows an individual to perform a task that they would otherwise be unable to do, or increases the ease and safety with which the task can be performed' (Royal Commission on Long Term Care, 1999).
  80. 80. Ambient assisted living “Age in place” „increasing their autonomy and assisting them in carrying out activities of daily life‟ (Wojciechowski and Xiong, 2008)
  81. 81. Mike Clark - telehealth to aid the delivery of housing, health, social care and support services for older and vulnerable people.
  82. 82. Design
  83. 83. Dementia dogs (Design Council)
  84. 84. Design of wards and homes e.g. gardens
  85. 85. Quality of life improves with an outdoor space or garden giving people the chance to: • be physically active • feel unrestrained • be more in touch with nature • be alone if they want to be • socialise if they want to • do meaningful things that make them feel at home.
  86. 86. A dementia-friendly facility aims to support independence and mobility in a safe and secure environment. Many familiar activities take place in gardens and outside spaces and are a normal part of everyday life, e.g. hanging out washing. Older people want design features that make up for physical impairment and support safe passage. Recreational gardening can be social and private. Gardening spots of privacy and reflection are important in shared living environments.
  87. 87. Charmaine Hardy
  88. 88. Thanks to Charmaine Hardy for giving us permission to use the photograph of the poppy on the front cover of the book.
  89. 89. Built environments
  90. 90. Inclusivity The British Standards Institute (2005) defines inclusive design as "The design of mainstream products and/or services that are accessible to, and usable by, as many people as reasonably possible ... without the need for special adaptation or specialised design.”
  91. 91. Tactile paving – Prof Marcus Ormerod (Salford)
  92. 92. Dementia friendly communities
  93. 93. Julie Line Jane Moore Kim Pennock Kim Hudson
  95. 95. e.g. ふれあい切符 Bruges
  96. 96. Healthy Living Club Stockwell – Simona Florio
  97. 97. Access to justice: non-statutory advocacy
  98. 98. Advocacy is, according to the Advocacy Charter: "…taking action to help people say what they want, secure their rights, represent their interests and obtain services they need. Advocates and advocacy schemes work in partnership with the people they support and take their side. Advocacy promotes social inclusion, equality and social justice”
  99. 99. 7. Contemporary challenges e.g. wandering
  100. 100. 1. The need to raise awareness of the dementias 2. Forewords 3. Contents of the book 4. What is wellbeing? What is personhood? What is dementia? 5. Practical issues about wellbeing 6. Promoting wellbeing 7. Contemporary challenges e.g. wandering
  101. 101. What could and should be done internationally?
  102. 102. A real need to include people with dementia in service/policy design and the direction of research (which might include wellbeing as well as neuropharmacological approaches.)
  103. 103. Kate Swaffer (@KateSwaffer) in Adelaide
  104. 104. “Dementia Alliance International”
  105. 105. End of part 2 (and end of both sessions)
  106. 106. Discussion