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.

1. Where are we now with
‘dementia friendly
communities’?
Dr Shibley Rahman
Public talk given at
BPP Law School on 10 June 2015

4. 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

5. 1. Definition

6. “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)

7. “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).”

8. 2. Considerations

9. • 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

11. 3. Alzheimer’s Society current framework

13. 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%).”

14. 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

15. ‘Guidance for communities registering for the recognition process
for dementia-friendly communities’

17. 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

18. 4. Some background (England)

21. 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.”

22. 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.”

23. 5. DFCs (Australia)

26. 6. DFCs (Japan)

27. Japan’s “population pyramid”

30. “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).

33. 7. Key developments in English strategy/policy

36. “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.”

39. 8. Dementia Alliance International

44. 9. Language

48. 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”

50. 10. Global background

54. 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

59. 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.

60. • 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

61. 11. “Dementia Friends”: an example of a ‘social
movement’

72. Aslam (2006) Journal of Marketing
Communications

74. 12. Dementia friendly cities

76. 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

77. BART DELTOUR, FOTON
DEMENTIA CHARITY, BRUGES
“Having dementia is very tough
but having a city who excludes
dementia — that is really tough.”

78. 13. Dementia friendly hospitals

80. 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

81. 14. Rights based approaches

83. 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

84. 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

91. 15. Businesses and ‘Nudge’

92. 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.

95. 16. Dementia friendly environments

97. “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

99. “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.

100. The “Don’t forget to go outside” campaign
from Leuven

101. 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.

102. 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.

103. 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.

108. 17. Leisure

111. 18. Education

112. “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.)

113. 19. Research

115. 20. Conclusion

116. 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

118. • 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.