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Dementia friendly communities - my talk this evening

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This is the talk I gave on dementia friendly communities this evening at BPP Law School. It is part of a public lecture series for raising awareness about English dementia policy for the general public. The lectures are provided completely free of charge.

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Dementia friendly communities - my talk this evening

  1. 1. Where are we now with ‘dementia friendly communities’? Dr Shibley Rahman Public talk given at BPP Law School on 10 June 2015
  2. 2. 1. Definition 2. Considerations 3. Alzheimer’s Society (current framework) 4. Some background (England) 5. DFCs (Australia) 6. DFCs (Japan) 7. Key developments in English dementia/strategy 8. Dementia Alliance International 9. Language 10. Global background 11. Dementia Friends: an example of a social movement 12. Dementia friendly cities 13. Dementia friendly hospitals 14. Rights based approaches 15. Businesses and ‘Nudge’ 16. Dementia friendly environments 17. Leisure 18. Education 19. Research 20. Conclusion
  3. 3. 1. Definition
  4. 4. “A dementia-friendly community is one in which people with dementia are empowered to have high aspirations and feel confident, knowing they can contribute and participate in activities that are meaningful to them.” (Alzheimer’s Society, August 2013)
  5. 5. “Dementia capable” (Lim and Lewis, The Gerontologist, 2015, Vol. 55, No. 2, 237–244) • “It can also be interpreted as an ability (a combination of staff knowledge, skills, and competency as well as available programs and services) to fulfill the needs of PWDs and their caregivers.” • “The exact term “dementia capable” first appeared in the Recommendations of the Public Members of the Advisory Council on Alzheimer’s Research, Care, and Services (HHS, 2012a).”
  6. 6. 2. Considerations
  7. 7. • Cultural / ethnic • Funding structures of healthcare • Hospital v home • Levels of public education • Willingness of volunteers to spread message • Professional attitudes • Authenticity of stakeholder involvement
  8. 8. 3. Alzheimer’s Society current framework
  9. 9. Building dementia-friendly communities: A priority for everyone • “Less than half of the respondents to the survey think their area is geared up to help them live well with dementia (42%).” • “More than half of UK adults surveyed in the YouGov poll feel that the inclusion of people with dementia in the community is fairly bad or very bad (59%).”
  10. 10. Recommendations from Alzheimer’s Society (2013) • Involvement of people with dementia • Challenge stigma and build understanding • Accessible community activities • Acknowledge potential • Ensure an early diagnosis • Practical support to enable engagement in community life • Community-based solutions • Consistent and reliable travel options • Easy-to-navigate environments • Respectful and responsive businesses and services
  11. 11. ‘Guidance for communities registering for the recognition process for dementia-friendly communities’
  12. 12. Foundation criteria • Make sure you have the right local structure in place to maintain a sustainable dementia friendly community • Identify a person or people to take responsibility for driving forward the work • Have a plan to raise awareness about dementia in key organisations and businesses within the community • Develop a strong voice for people with dementia living in your communities. • Raise the profile of your work to increase reach and awareness to different groups in the community • Focus your plans on a number of key areas that have been identified locally • Have in place a plan or system to update the progress of your community after six months and one year
  13. 13. 4. Some background (England)
  14. 14. LGA/Innovations in dementia (May 2012) “People told us that a community could become more dementia-capable by: • increasing its awareness of dementia • supporting local groups for people with dementia and carers • providing more information, and more accessible information about local services and facilities • thinking about how local mainstream services and facilities can be made more accessible for people with dementia.”
  15. 15. LGA/Innovations in dementia (May 2012) “People told us they had stopped doing some things in their community because: • their dementia had progressed and they were worried about their ability to cope • they were concerned that people didn’t understand or know about dementia.” “People told us that they would like to be able to: • pursue hobbies and interests • simply go out more • make more use of local facilities • help others in their community by volunteering.”
  16. 16. 5. DFCs (Australia)
  17. 17. 6. DFCs (Japan)
  18. 18. Japan’s “population pyramid”
  19. 19. “Ninchisho Supporters” • By the end of the seminar, attendees are expected to have a good understanding of dementia, designed to combat stigma and discrimination. • They become supporters and advocates. • 6-hour training workshop. • During the 90-minute Ninchisho Supporter seminar, attendees learn about dementia itself, how it affects the lives of those living with dementia and what they should know in order to effectively support people with dementia. • Standard text and video materials are used nationwide for the seminars, with variations according to the attendee groups (for example, schoolchildren).
  20. 20. 7. Key developments in English strategy/policy
  21. 21. “Prime Minister Dementia Challenge” – loneliness and dfcs “People with dementia talk about stigma and social isolation. They report losing friends following their diagnosis, seeing people cross the street to avoid them, feeling lonely, and struggling to use local services. Research with the general public has shown that this is often down to the fear, misunderstanding and helplessness people feel in the face of dementia. They simply do not understand enough to support someone to live well with dementia.”
  22. 22. 8. Dementia Alliance International
  23. 23. 9. Language
  24. 24. Alz Australia language guidelines – terms to avoid (examples) • “Sufferer” • “Victim” • “Demented person” • “Vacant dement” • “He/she’s fading away or disappearing” • “Empty shell” • “Not all there” • “An attention seeker”
  25. 25. 10. Global background
  26. 26. WHO “Age friendly cities” • outdoor spaces and buildings • transport • housing • social participation • respect and social inclusion • civic participation and employment information • health and social care services
  27. 27. ADI “New domains and global examples” DFC efforts are a response to pervasive and destructive stigma, a key finding in national and subnational Alzheimer plans. DFCs give full voice to people living with dementia in their design and execution, understanding that at times we have a great challenge to listen to the voices of people living with dementia. Prior to the earliest experiments in DFCs, for many years the World Health Organization (WHO) and key collaborators have been promoting and designating Age Friendly Cities (now expanded to communities) In the UK, a serious effort to create clear standards for DFCs is underway.
  28. 28. • There should be a conducive social and physical environment • Strong network of carers and supporters is essential • People with dementia and their carers should be the key decision makers • The whole community should be dementia aware most communities already have several good dementia friendly aspects, they only need further adaptations • Better information packages and custom built training should be available • “Dementia friends”, the responsibilities should be culturally appropriate and locally relevant • Social welfare aspects of elderly with dementia is the most diverse aspect with many countries having no or minimal provisions. Jacob Roy’s list
  29. 29. 11. “Dementia Friends”: an example of a ‘social movement’
  30. 30. Aslam (2006) Journal of Marketing Communications
  31. 31. 12. Dementia friendly cities
  32. 32. Making York (a city) more ‘dementia friendly’ Crampton, Dean and Eley (JRF 2012): • better awareness and understanding of dementia • a more consistent and supportive response from GPs and health nd social care professionals • improved customer service, especially in larger and more ‘corporate’ companies where technology and speed are prioritised • a slower pace of life generally, using quiet and green spaces better • welcoming people with dementia to use all the facilities that the city has on offer
  33. 33. BART DELTOUR, FOTON DEMENTIA CHARITY, BRUGES “Having dementia is very tough but having a city who excludes dementia — that is really tough.”
  34. 34. 13. Dementia friendly hospitals
  35. 35. Dementia friendly wards • Persons with dementia do not attend hospitals ‘because of’ their dementia • University Hospital Southampton NHS Foundation Trust and Jeni Bell • 28-bed ‘dementia-friendly’ ward • brightly coloured doors • images such as umbrellas, lighthouses and starfish instead of bed numbers
  36. 36. 14. Rights based approaches
  37. 37. Convention on the Rights of Persons with Disabilities (“CRPD”) Article 1 - Purpose Article 2 - Definitions Article 3 - General principles Article 4 - General obligations Article 5 - Equality and non-discrimination Article 6 - Women with disabilities Article 7 - Children with disabilities Article 8 - Awareness-raising Article 9 - Accessibility Article 10 - Right to life Article 11 - Situations of risk and humanitarian emergencies Article 12 - Equal recognition before the law Article 13 - Access to justice Article 14 - Liberty and security of the person Article 15 - Freedom from torture or cruel, inhuman or degrading treatment or punishment Article 16 - Freedom from exploitation, violence and abuse Article 17 - Protecting the integrity of the person Article 18 - Liberty of movement and nationality
  38. 38. Convention on the Rights of Persons with Disabilities (“CRPD”) Article 19 - Living independently and being included in the community Article 20 - Personal mobility Article 21 - Freedom of expression and opinion, and access to information Article 22 - Respect for privacy Article 23 - Respect for home and the family Article 24 - Education Article 25 - Health Article 26 - Habilitation and rehabilitation Article 27 - Work and employment Article 28 - Adequate standard of living and social protection Article 29 - Participation in political and public life Article 30 - Participation in cultural life, recreation, leisure and sport Article 31 - Statistics and data collection Article 32 - International cooperation Article 33 - National implementation and monitoring Article 34-50 various issues including procedural aspects
  39. 39. 15. Businesses and ‘Nudge’
  40. 40. Problems with banking • When using a bank, 66% of people with dementia need some assistance. • Difficulties were experienced by 76% of people with dementia when using a bank. • When paying bills, 70% of people with dementia • need assistance. • Of the carers the Alzheimer’s Society asked, 80% said that banks need • a greater understanding of lasting powers of attorney. • 84% of carers help people with dementia deal with the bank. • Without a recognised power of attorney, carers reported that • banks and utility companies refused to deal with them.
  41. 41. 16. Dementia friendly environments
  42. 42. “An inclusive society is one that leaves no one behind.” (Design Council) • Welcoming to everyone • Responsive to people’s needs • Intuitive to use • Flexible • Offer choice when a single design solution cannot meet all user needs • Convenient so they can be used without undue effort or special separation and so that they maximise independenc
  43. 43. “Legible environments” (Housing LIN) • A clear hierarchy of spaces including private, semi- private, semi-public and public spaces • Plenty of views of the outside provide interesting views, natural light and ventilation. • Being able to see outside helps orientation and wayfinding and a sense of connection to the wider world • A minimum of wide, short corridors, single banked to allow natural light and views of the outside. • There is conflicting evidence about the effectiveness of signs and colour coding.
  44. 44. The “Don’t forget to go outside” campaign from Leuven
  45. 45. Inclusive Design for Getting Outdoors (I’DGO) • I’DGO (Inclusive Design for Getting Outdoors) was a research project funded by the Engineering and Physical Sciences Research Council. • It explored if, and in what way, the ability to get out and about impacts on older people’s quality of life and what barriers there are to achieving this day-to-day. • I’DGO research involved over 4,350 participants and was undertaken in two key phases over a ten year period (2003-2103). • The team involved research centres in the Universities of Edinburgh, Salford, Warwick and Heriot-Watt.
  46. 46. Key messages • The desire to get out and about does not diminish in older age, nor does the variety of activities people like to do outdoors. • If older people live in an environment that makes it easy and enjoyable for them to go outdoors, they are more likely to be physically active and satisfied with life.
  47. 47. Key messages • People who don’t find it easy or enjoyable to get outdoors can spiral into poor physical health, less social contact with others and a reduced quality of life overall. • Lesser-quality environments are often considered by older people to pose an increased falls risk, especially by those with vision, mobility or other impairments.
  48. 48. 17. Leisure
  49. 49. 18. Education
  50. 50. “Education, the brain and dementia: neuroprotection or compensation?” “More education did not protect individuals from developing neurodegenerative and vascular neuropathology by the time they died but it did appear to mitigate the impact of pathology on the clinical expression of dementia before death.” (EClipSE Collaborative Members, Brain. 2010 Aug;133(Pt 8):2210-6.)
  51. 51. 19. Research
  52. 52. 20. Conclusion
  53. 53. 1. Definition 2. Considerations 3. Alzheimer’s Society (current framework) 4. Some background (England) 5. DFCs (Australia) 6. DFCs (Japan) 7. Key developments in English dementia/strategy 8. Dementia Alliance International 9. Language 10. Global background 11. Dementia Friends: an example of a social movement 12. Dementia friendly cities 13. Dementia friendly hospitals 14. Rights based approaches 15. Businesses and ‘Nudge’ 16. Dementia friendly environments 17. Leisure 18. Education 19. Research 20. Conclusion
  54. 54. • All Party Parliamentary Group on Dementia • Alzheimer’s Disease International • Beth Britton • Prof Alistair Burns • Mick Carmody • Amy Dalyrymple (Alzheimer Scotland) • Karen Harrison Dening • Anna Gaughan • Jayne Goodrick • Darren Gormley • Ruth Hannan • Hilda Hayo • Prof John Hodges • Agnes Houston • Geoff Huggins (Scottish Government) • Jeremy Hughes • Simon Kitchen • Prof Facundo Manes • Sally Ann Marciano • Colin McDonnell • George McNamara • Jenni Middleton • Steve Milton • Chris Roberts • Helga Rohra • Prof Martin Rossor • Kate Swaffer • Rachel Thompson • Andy Tysoe • Marc Wortmann And Radcliffe Health, and Jessica Kingsley Publishers.

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