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Doing Dementia Differently
Workshop Summary
Spiritofcreation.com
Ambition:
…turn good ideas into valued services…
Kevin Gavaghan
Spirit of Creation.com
Collaborative Service Design
Collaborative Service Design
• Generation always
begins with the Gaps &
Issues Summary raised
in Discovery and uses
participants’ imagination
to release hundreds of
ideas that might match a
known or unknown gap
in the user or customer’s
life.
• The output of this stage
is a large number of
ideas written-up using a
template as a formal
Session Report
Summary
• (Takes circa 30% of
time)
• Discovery is always the
start point. Discovery is
concerned with research
and analysis of the
patients or customers,
which can be identified
individually or in
segments. In each case
Discovery focuses on
wants and needs.
• The output from Discovery
is a Gaps & Issues Paper
summarising the context,
issues and insights
• (Takes circa 20% of
time)
DISCOVERY
• Synthesis starts by Listing
and Ranking ideas
generated. Participants
filter ideas through a set
of criteria to identify key
ideas or streams of ideas
that cluster together.
• In group sessions with
feed-back, participants
refine the lists resulting in
• a Synthesis Report. This
appears in a bar chart
form naming the ‘Top
Three Propositions’ for
development in Enterprise
• (Takes circa 25% of time)
• Enterprise which have
started to emerge from
Synthesis into a properly
structured outline
Business Plan for a new
or improved service.
• Further work by a
dedicated team will use a
more detailed DGSE
process to produce an
outline service journey
map to add to the
Business Plan/Blueprint.
• (Takes circa 25% of
time)
• Additional work is
required for an
implementable Blueprint.
Discovery Generation Synthesis Enterprise
‘Doing Dementia Differently Workshop
 Problems & Issues:
• Aging
• Un-joined dots
• Rampant technology
 Solutions:
• Collaboration
• Community based
• Using all channels
• Transformation using I.T.
Demographics:
• 800,000 now
• 800K-1.5m by 2050
• £29bn p.a. costs to U.K
• Less than 40% diagnosed
• Ratio 1:8 carers to patients
A guide to living with
dementia (current info
worse than an iPhone
manual)
Discovery: Group A
National Illness Svc
National Wellness Svc
National Health Svc
No awareness of scale
of problem
Dementia Screening
as a default at 65-70-
75??
Legitimise carer role
and secondary
‘advisers’
Remove Isolation
No holistic journey
through care
“THE
CONVERSATION”
Early diagnosis
Early intervention
Medication
Been on 10 year
journey
Diagnosis Opt In
Opt Out?
3 years from first
‘episode’
GP Education
The ‘Light bulb’
moment
Carer by necessity,
not choice
How to navigate the
care (and health)
system
Simpler diagnosis
MMSE on Internet
With GP?
Information
Empathy from non-
carers
Stigma
Proactive
Diagnosis
More Enjoyable
Lives
First Signs/Episode(s)
Dismissed. Denial?
De-stigmatise it
The family’s secret
Anti-social
Shrinking World
Normalise it
Get it in the open
How do you recognise
the signs of dementia?
Discovery: Group B
Older people with fear
of technology
Finance pressures on
activities
How do you reach people
with dementia but are not
using/have minimal
contact
Existing services need to
justify themselves with
proven outcome to continue
Potential issues accessing
internet info etc if elderly
and not connected
Bridge – younger to
inform/share
technology with old
Create an environment
suitable for elderly to meet
technology in easy way
How do individuals
know what is available
and how to know what
is most suitable?
Encouragement
Technology connection
Grandparents and
Grandchildren
Encourage younger
volunteers (e.g.
through qualification,
education points)
How do you deal with
protection / risk issues with
contact introduced
How do we help people
feel more comfortable
telling others that they
have dementia
iPad can be a tool to
spark interactions
(e.g. photos/music)
Drugs/Medical lack of
sufficient incentive for
NPD (+speed)
Cultural
Revolution
Information
Revolution
Bridge
How do we carve out
the space for a person
with dementia?
How do we deal with
the lack of time?
How do we tackle the
public assumptions
that are made?
Is it a stigma issue?
How do we make people
more aware?
Provide more
knowledge?
Discovery: Group C
How do we provide
more support for
families / carers?
What can we do for
enjoyment?
How do we change the ethos of
those organizations including
people with dementia in the
planning of services?
What is it that stops people
talking/asking people
with dementia their
opinions on planning?
What can we do to enable
people to know they can
stay in peoples lives and
help in some way? (a
network)
When you are working
– how do we support
younger people with
dementia?
How can we
disseminate the
evidence from the
inclusion field?
How do we keep people
with dementia
connected/included
How to equally value
the 2nd vs 1st stage of
our lives. How do we
socially encompass all
stages of life?
How to get community to
realise how it feels to a
person with dementia
How to get more empathy
Interaction with other
people – how to make
this part of the lives of
people with dementia?
How do we include
people with
dementia in
planning of
services
Knowledge and
support for
families and
friends
What to do
to tackle
stigma?
How do we ensure
people remain
included and
connected?
What have people with
dementia found most
useful?
Discovery: Group D
How do we get investors
excited? i.e. incentives
like tax breaks
What does collaborative
leadership look like for
dementia?
What is the real cost of
dementia? i.e. including
impact on support network
What services do those
who care for people with
dementia value most?What services do people
with dementia find most
valuable?
Who gets to make
decisions about use of
resources and budgets?
Has any country got it
right? (i.e. learn from
other countries like
Netherlands)
How to make dementia
innovation ‘sexy’
What are the
constraints that are
holding innovations
back?Who are we doing the
work for?
Person – family –
service provider?
What is counted as a
cost for intervention?
i.e. added infections
once hospitalised
Does personalization
work? Can it be made
to work for people with
dementia?
How can we benefit those
people with dementia who
are not using statutory
services?
What is the value of
connection? Can we
rebuild community
using technology?
What works well and
how do we share /
disseminate this
information?
How can we attribute a
value to the cost of
dementia compared
with other cultures?
People
Products &
Services
How can society work
differently?
What is the unmet
need?
People
Systems
Discovery: Group E
Gap around grief and
support of family
members
At what stage do people
go beyond the family?
When do services get
involved?
How do we support the
person. How they are and
how they might be. Future
focused
Where can we look –
where is interesting
practice?
Media representation of
dementia
‘age’ is a negative word
How do we celebrate in
dementia?
Finding positives
Support based activity
Use of Technology
-Tablets
-Apps
-Accessibility
How do we raise
awareness of dementia
to better support people?
How do we value the carers
(professional) around
provision of support to those
with dementia
What is grief?
-Adjust to new situation
-Death
-Nothing to look forward to
Gap around grief
and support of
family members
Perceptions and
diagnosis
Cost of care
Too easy to obtain debt
Plan for later life –
statement of wishes
Discovery: Group F
Connected & cost
effective (a positive!)
Families are
geographically
dispersed
Generational attitudes to
saving / preparing for
the future
Multicultural
diversity
Loss of self-
confidence and
independence
Age gap between
young and old
Opportunity for
mutual benefit
People living and
working longer
- Inability to work
longer if impacted
Family structures
have changed
We teach our kids that
debt is normal
Elderly more vulnerable
to cold calling &
automated payment
services
Automated services not
effective for elderly
(e.g. bill payment,
automated telephone
systems)
Pace of change
People living and
working longer
Economic
Accessibility &
training help
Technology
Social
Discovery Summary
Circa 500 questions in 2 hours
Stigma
(Out and Proud …… and
Out)
11:30 12:00 12:30
A
B
E
F
Generation – 11 Propositions
How do we create a
wellbeing based model
rather than a disease based
model?
How to raise awareness
about what dementia is –
what it looks like – taking
the fear out of the ‘D’ word
Empowering staff in
residential/building based
service to manage care
support to people with
dementia
Person Hub – using
technology
Dementia City
(How do we keep people
connected)
Working, engaged when
they experience/get
diagnosed with dementia?
How to deal with
fragmented family
How do we use the Arts
(and other creative
opportunities) to support
people experiencing
dementia to thrive?
How do you keep the person
at the centre of services?
Individualised support
and services
Diagnosis (Self)
Synthesis: Self Diagnosis
Rank Score Idea
1 38 Diagnosis
2 31 Dementia City
3 29 How do we keep people connected when in dementia
4 17 Hub Idea
5 16 How to raise awareness about dementia?
6 14 Stigma ‘out and proud’
7 13 Person hub using technology
8 12 How to use the Arts
9 9 Fragmented family
10 6 Wellbeing model versus disease based model
Synthesis: Propositions Ranked
Synthesis : Energy, rigour, debate
Discovery
• 500 Questions
• 2 hours
Generation
• 100’s of post-its
• 11 propositions
Synthesis
• 3 top
propositions
• Diagnosis /
Dementia City /
Campaigns
Context
ENTERPRISE - the 6 P’s
1 Proposition 2 People
Partnerships
3 Processes &
Prototype
4 Place 5 Promotion 6 Performance
• Why is different
diagnosis service
so important?
• Describe the
proposition in a
sentence
• Who will you
need and with
what skills?
• What processes
and systems will
you need in place?
• Where will it be
delivered?
• How will it be
communicated?
• What are the
measures of
success?
Having asked the right questions, generated dozens of ideas for reduction from eleven to two Propositions the Workshop participants
were ready to adopt Dementia City and Diagnosis. During the summing up it was clear that Dementia City struck most as a large scale
umbrella under which many good ideas and innovative solutions could be developed as collaborative service design projects. (However, if
anything, Dementia City was seen as “too big” especially if swallowed all at once!) So, a pragmatic conclusion from the day and on
reflection by the SOC team during the days after, it was decided to pursue the Diagnosis project. This course of action would provide many
essential components for solutions to other problems. This project is labelled ‘Diagnosis’ Project Outline.
The benefits of Dementia Diagnosis as the top priority project arising from the ‘Doing Dementia Differently’ Workshop are set out below.
Already underway as a SPIRIT OF CREATION project SOC has designated ‘Time-Line’ and ‘Way-Finder’ as Propositions as a means to
determine 1) one’s age and stage of dementia and 2) structures and tools to find one’s way in the “Wild Wood” of diagnosing dementia
and then matching services and products to needs precisely identified along the Time-Line.
Enterprise Summary (& 6 P’s)
Diagnosis Project
Diagnosis Project: Outline
The Project Outline proposes to take the complex challenges
of communication about dementia and turn it into a clear new
language that is both highly visual and simple to read and
understand.
This Project Outline aims a) to identify people with skills,
knowledge and processes of most interest to dementia
patients and b) invite those with the relevant know-how to a
workshop this year 2014. This will help carers and patients to
manage lives better in a digital world.
Traditional diagnosis by clinicians/GP’s and researchers are
now being added to by the use of new diagnostic tools. In a
world being transformed by IT could be helpful if there were
ways to capture the history and evolving requirements of the
patient. This could assist with the productive deployment of
new technologies i.e. scanning, personal smart-phones and
Big Data analysis.
has been slower than other industries
“Healthcare has been slower than other industries
to feel the force of digital technology. While the
internet has changed the world’s of retail and
banking medicine is largely conducted in hospitals
and Doctor’s surgeries, with patients the passive
recipients of treatment and advice. That finally
looks set to change”
“Your Bank Manager no longer controls your
banking; you do it yourself that will become of
healthcare. Technology will allow people to take
more responsibility for managing their own
healthcare.”
Quote: ‘Wear your Medicine’ - FT 19.07.2014
40 50 60 70 80 90 100
Diagnosis Project: Matching capabilities to needs
1. Capabilities:
• Memory
• Reason
• Sense of self
2. Senses:
• Speech
• Hearing
• Smell
• Touch
• Sight
3. Mobility:
• Balance
• Strength
• Co-ordination
• Welfare and nutrition
4. Matching capabilities to needs:
• Tracking progress of deterioration against previous levels
can provide vital information for physical/mental/spiritual
well being.
Time
Diagnosis/Memory Loss
E.G. Memory
40 50 60 70 80 90 100
Reason
40 50 60 70 80 90 100
x
x
x
x
Sense of Self
40 50 60 70 80 90 100
Diagnosis Project: Tests & Technologies
Diagnosis Project: Proposition
More people are confronting dementia in the
population as a whole. More people are
opting for early/mid/late testing as
appropriate. The number of tests is widening
through affordable scanning, smart devices
and Big Data filters. Segmentation is helping
people to build solutions around their
individual needs. The triangulation of
disease, diagnosis and communications is
working to the patients’ advantage. This
proposition underlines the need for a
collaborative service design approach.
Emerging Technologies:
• Eye tests
• Facial recognition
• Smart contact lenses
• Wearables
• Ingestibles
• Mobile dashboard
• Games
“Three big trends lie at the heart of change: the collapsing
cost of sensors; the prevalence of smart ‘phones acting as
and brains for gathering and processing personal health
information; and the new science of big data with its
finding important insights buried in masses of
being collected.” Quote – ‘Wear your Medicine’ FT
Diagnosis Project: Tests & Technologies
There are different diagnosis approaches according to early/mid/late stages as appropriate
Enterprise Diagnosis
‘Doing Dementia Differently’ Workshop Participants
Ben Rowland, Chair of Trustees, Toynbee Hall
Robert Peters, MD, 2020 Research/Mi Project Liverpool
Graham Fisher, CEO, Toynbee Hall
David Alcock, TriBorough Strategic Relationship
Manager
John Smith, Director of Consultancy, Civil Eyes
Research
David Brindle, Public Services Editor, The Guardian
Madeleine Cooper-Ueki, Programme Manager, NDTi
Colin Capper, Services Development Manager,
Alzheimer’s Assoc.
Natasha Howard, Service Development Officer,
Alzheimer’s Assoc.
Mark Brangwyn, Head of Community Services at
London Councils
Richard Elphick, Market Development L.B. Camden
Bronwen Jones, Assistant Manager, Kingsgate Resource Centre
Juliette Hagan, Assistant Manager, Charlie Ratchford Resource Ctre
Tracey McDermott, Dementia Befriending Co-ordinator – Age UK –
Camden
Anna Betz, OT–Camden Memory Service
Sarah-Lou Morris, Carer (Member of CCS)
Mary Boyarski, Carer
Marijke Post, Social Worker/Re-enablement Lead – LB Camden
Nicola Lane, Artist & Carer
Sarah Stuart, Student St Martin’s
Spirit of Creation Team:
Facilitators:
Kevin Gavaghan
Rupert Angel
Robert Holman
Observers/Outcomes:
Chris Carswell
Kate Stott
Iain Russell
Photographer:
Gemma Taylor
Colum Lowe, Manager, Red & Yellow Care
Sarah Gavaghan, Entrepreneur
Fintain Coyle, Inventv Productions/Brainhub
Joey Tadiar, Apple
Callum Sinclair, Apple
Chris Gage, MD, Ladder to the Moon
Chris Minett, M.D. Positive Ageing
Sarah Reed, M.D. Many Happy Returns
Iain Russell, Independent Consultant/Chair
of EMEA Charity
Robert Evans, Consultant, Guideposts Trust
Christine Megson, Meganewswest Limited
Peter Stevens, M.D BOP Training
Cecilia Yardley, Senior Partnerships Officer,
Parkinson’s UK
Samera Khokar, Toynbee Intern
Adam Pankhurst, Toynbee Intern
Emily Shackleton, Nottingham Graduate
studying MA in Interactive Journalism
‘Doing Dementia Differently’ Workshop Participants
Diagnosis Project: Invitation
Big Question:
• “In the absence of a coherent response from one’s GP the Big Question is how do we take the tens of
thousands of sources of information about dementia and turn them into a simple process which patients and
carers can use to discover whether they have the disease and whether they can begin to learn new practices
and behaviours which will helpful as the illness progresses ?”
Objectives of Workshop:
• Gather the right mix of participants to produce two/three ways forward –
o That meet the needs of the Diagnosis Project Outline
o Offers a better approach to Dementia Diagnosis
o Opens up new uses of technology involving analogue and digital partners
Participants use and become proficient in the 4-stage process:
• Discovery/Generation/Synthesis/Enterprise
‘turning good ideas into valued services and products’

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DDDsummary14082014

  • 1. Doing Dementia Differently Workshop Summary Spiritofcreation.com
  • 2. Ambition: …turn good ideas into valued services… Kevin Gavaghan Spirit of Creation.com
  • 4. Collaborative Service Design • Generation always begins with the Gaps & Issues Summary raised in Discovery and uses participants’ imagination to release hundreds of ideas that might match a known or unknown gap in the user or customer’s life. • The output of this stage is a large number of ideas written-up using a template as a formal Session Report Summary • (Takes circa 30% of time) • Discovery is always the start point. Discovery is concerned with research and analysis of the patients or customers, which can be identified individually or in segments. In each case Discovery focuses on wants and needs. • The output from Discovery is a Gaps & Issues Paper summarising the context, issues and insights • (Takes circa 20% of time) DISCOVERY • Synthesis starts by Listing and Ranking ideas generated. Participants filter ideas through a set of criteria to identify key ideas or streams of ideas that cluster together. • In group sessions with feed-back, participants refine the lists resulting in • a Synthesis Report. This appears in a bar chart form naming the ‘Top Three Propositions’ for development in Enterprise • (Takes circa 25% of time) • Enterprise which have started to emerge from Synthesis into a properly structured outline Business Plan for a new or improved service. • Further work by a dedicated team will use a more detailed DGSE process to produce an outline service journey map to add to the Business Plan/Blueprint. • (Takes circa 25% of time) • Additional work is required for an implementable Blueprint. Discovery Generation Synthesis Enterprise
  • 5.
  • 6. ‘Doing Dementia Differently Workshop  Problems & Issues: • Aging • Un-joined dots • Rampant technology  Solutions: • Collaboration • Community based • Using all channels • Transformation using I.T. Demographics: • 800,000 now • 800K-1.5m by 2050 • £29bn p.a. costs to U.K • Less than 40% diagnosed • Ratio 1:8 carers to patients
  • 7. A guide to living with dementia (current info worse than an iPhone manual) Discovery: Group A National Illness Svc National Wellness Svc National Health Svc No awareness of scale of problem Dementia Screening as a default at 65-70- 75?? Legitimise carer role and secondary ‘advisers’ Remove Isolation No holistic journey through care “THE CONVERSATION” Early diagnosis Early intervention Medication Been on 10 year journey Diagnosis Opt In Opt Out? 3 years from first ‘episode’ GP Education The ‘Light bulb’ moment Carer by necessity, not choice How to navigate the care (and health) system Simpler diagnosis MMSE on Internet With GP? Information Empathy from non- carers Stigma Proactive Diagnosis More Enjoyable Lives First Signs/Episode(s) Dismissed. Denial? De-stigmatise it The family’s secret Anti-social Shrinking World Normalise it Get it in the open
  • 8. How do you recognise the signs of dementia? Discovery: Group B Older people with fear of technology Finance pressures on activities How do you reach people with dementia but are not using/have minimal contact Existing services need to justify themselves with proven outcome to continue Potential issues accessing internet info etc if elderly and not connected Bridge – younger to inform/share technology with old Create an environment suitable for elderly to meet technology in easy way How do individuals know what is available and how to know what is most suitable? Encouragement Technology connection Grandparents and Grandchildren Encourage younger volunteers (e.g. through qualification, education points) How do you deal with protection / risk issues with contact introduced How do we help people feel more comfortable telling others that they have dementia iPad can be a tool to spark interactions (e.g. photos/music) Drugs/Medical lack of sufficient incentive for NPD (+speed) Cultural Revolution Information Revolution Bridge
  • 9. How do we carve out the space for a person with dementia? How do we deal with the lack of time? How do we tackle the public assumptions that are made? Is it a stigma issue? How do we make people more aware? Provide more knowledge? Discovery: Group C How do we provide more support for families / carers? What can we do for enjoyment? How do we change the ethos of those organizations including people with dementia in the planning of services? What is it that stops people talking/asking people with dementia their opinions on planning? What can we do to enable people to know they can stay in peoples lives and help in some way? (a network) When you are working – how do we support younger people with dementia? How can we disseminate the evidence from the inclusion field? How do we keep people with dementia connected/included How to equally value the 2nd vs 1st stage of our lives. How do we socially encompass all stages of life? How to get community to realise how it feels to a person with dementia How to get more empathy Interaction with other people – how to make this part of the lives of people with dementia? How do we include people with dementia in planning of services Knowledge and support for families and friends What to do to tackle stigma? How do we ensure people remain included and connected?
  • 10. What have people with dementia found most useful? Discovery: Group D How do we get investors excited? i.e. incentives like tax breaks What does collaborative leadership look like for dementia? What is the real cost of dementia? i.e. including impact on support network What services do those who care for people with dementia value most?What services do people with dementia find most valuable? Who gets to make decisions about use of resources and budgets? Has any country got it right? (i.e. learn from other countries like Netherlands) How to make dementia innovation ‘sexy’ What are the constraints that are holding innovations back?Who are we doing the work for? Person – family – service provider? What is counted as a cost for intervention? i.e. added infections once hospitalised Does personalization work? Can it be made to work for people with dementia? How can we benefit those people with dementia who are not using statutory services? What is the value of connection? Can we rebuild community using technology? What works well and how do we share / disseminate this information? How can we attribute a value to the cost of dementia compared with other cultures? People Products & Services How can society work differently? What is the unmet need? People Systems
  • 11. Discovery: Group E Gap around grief and support of family members At what stage do people go beyond the family? When do services get involved? How do we support the person. How they are and how they might be. Future focused Where can we look – where is interesting practice? Media representation of dementia ‘age’ is a negative word How do we celebrate in dementia? Finding positives Support based activity Use of Technology -Tablets -Apps -Accessibility How do we raise awareness of dementia to better support people? How do we value the carers (professional) around provision of support to those with dementia What is grief? -Adjust to new situation -Death -Nothing to look forward to Gap around grief and support of family members
  • 12. Perceptions and diagnosis Cost of care Too easy to obtain debt Plan for later life – statement of wishes Discovery: Group F Connected & cost effective (a positive!) Families are geographically dispersed Generational attitudes to saving / preparing for the future Multicultural diversity Loss of self- confidence and independence Age gap between young and old Opportunity for mutual benefit People living and working longer - Inability to work longer if impacted Family structures have changed We teach our kids that debt is normal Elderly more vulnerable to cold calling & automated payment services Automated services not effective for elderly (e.g. bill payment, automated telephone systems) Pace of change People living and working longer Economic Accessibility & training help Technology Social
  • 13. Discovery Summary Circa 500 questions in 2 hours
  • 14.
  • 15. Stigma (Out and Proud …… and Out) 11:30 12:00 12:30 A B E F Generation – 11 Propositions How do we create a wellbeing based model rather than a disease based model? How to raise awareness about what dementia is – what it looks like – taking the fear out of the ‘D’ word Empowering staff in residential/building based service to manage care support to people with dementia Person Hub – using technology Dementia City (How do we keep people connected) Working, engaged when they experience/get diagnosed with dementia? How to deal with fragmented family How do we use the Arts (and other creative opportunities) to support people experiencing dementia to thrive? How do you keep the person at the centre of services? Individualised support and services Diagnosis (Self)
  • 16.
  • 18.
  • 19. Rank Score Idea 1 38 Diagnosis 2 31 Dementia City 3 29 How do we keep people connected when in dementia 4 17 Hub Idea 5 16 How to raise awareness about dementia? 6 14 Stigma ‘out and proud’ 7 13 Person hub using technology 8 12 How to use the Arts 9 9 Fragmented family 10 6 Wellbeing model versus disease based model Synthesis: Propositions Ranked
  • 20. Synthesis : Energy, rigour, debate Discovery • 500 Questions • 2 hours Generation • 100’s of post-its • 11 propositions Synthesis • 3 top propositions • Diagnosis / Dementia City / Campaigns
  • 21.
  • 22. Context ENTERPRISE - the 6 P’s 1 Proposition 2 People Partnerships 3 Processes & Prototype 4 Place 5 Promotion 6 Performance • Why is different diagnosis service so important? • Describe the proposition in a sentence • Who will you need and with what skills? • What processes and systems will you need in place? • Where will it be delivered? • How will it be communicated? • What are the measures of success? Having asked the right questions, generated dozens of ideas for reduction from eleven to two Propositions the Workshop participants were ready to adopt Dementia City and Diagnosis. During the summing up it was clear that Dementia City struck most as a large scale umbrella under which many good ideas and innovative solutions could be developed as collaborative service design projects. (However, if anything, Dementia City was seen as “too big” especially if swallowed all at once!) So, a pragmatic conclusion from the day and on reflection by the SOC team during the days after, it was decided to pursue the Diagnosis project. This course of action would provide many essential components for solutions to other problems. This project is labelled ‘Diagnosis’ Project Outline. The benefits of Dementia Diagnosis as the top priority project arising from the ‘Doing Dementia Differently’ Workshop are set out below. Already underway as a SPIRIT OF CREATION project SOC has designated ‘Time-Line’ and ‘Way-Finder’ as Propositions as a means to determine 1) one’s age and stage of dementia and 2) structures and tools to find one’s way in the “Wild Wood” of diagnosing dementia and then matching services and products to needs precisely identified along the Time-Line.
  • 23. Enterprise Summary (& 6 P’s) Diagnosis Project
  • 24. Diagnosis Project: Outline The Project Outline proposes to take the complex challenges of communication about dementia and turn it into a clear new language that is both highly visual and simple to read and understand. This Project Outline aims a) to identify people with skills, knowledge and processes of most interest to dementia patients and b) invite those with the relevant know-how to a workshop this year 2014. This will help carers and patients to manage lives better in a digital world. Traditional diagnosis by clinicians/GP’s and researchers are now being added to by the use of new diagnostic tools. In a world being transformed by IT could be helpful if there were ways to capture the history and evolving requirements of the patient. This could assist with the productive deployment of new technologies i.e. scanning, personal smart-phones and Big Data analysis. has been slower than other industries “Healthcare has been slower than other industries to feel the force of digital technology. While the internet has changed the world’s of retail and banking medicine is largely conducted in hospitals and Doctor’s surgeries, with patients the passive recipients of treatment and advice. That finally looks set to change” “Your Bank Manager no longer controls your banking; you do it yourself that will become of healthcare. Technology will allow people to take more responsibility for managing their own healthcare.” Quote: ‘Wear your Medicine’ - FT 19.07.2014
  • 25. 40 50 60 70 80 90 100 Diagnosis Project: Matching capabilities to needs 1. Capabilities: • Memory • Reason • Sense of self 2. Senses: • Speech • Hearing • Smell • Touch • Sight 3. Mobility: • Balance • Strength • Co-ordination • Welfare and nutrition 4. Matching capabilities to needs: • Tracking progress of deterioration against previous levels can provide vital information for physical/mental/spiritual well being. Time Diagnosis/Memory Loss E.G. Memory 40 50 60 70 80 90 100 Reason 40 50 60 70 80 90 100 x x x x Sense of Self 40 50 60 70 80 90 100
  • 26. Diagnosis Project: Tests & Technologies Diagnosis Project: Proposition More people are confronting dementia in the population as a whole. More people are opting for early/mid/late testing as appropriate. The number of tests is widening through affordable scanning, smart devices and Big Data filters. Segmentation is helping people to build solutions around their individual needs. The triangulation of disease, diagnosis and communications is working to the patients’ advantage. This proposition underlines the need for a collaborative service design approach. Emerging Technologies: • Eye tests • Facial recognition • Smart contact lenses • Wearables • Ingestibles • Mobile dashboard • Games “Three big trends lie at the heart of change: the collapsing cost of sensors; the prevalence of smart ‘phones acting as and brains for gathering and processing personal health information; and the new science of big data with its finding important insights buried in masses of being collected.” Quote – ‘Wear your Medicine’ FT
  • 27. Diagnosis Project: Tests & Technologies There are different diagnosis approaches according to early/mid/late stages as appropriate
  • 29. ‘Doing Dementia Differently’ Workshop Participants Ben Rowland, Chair of Trustees, Toynbee Hall Robert Peters, MD, 2020 Research/Mi Project Liverpool Graham Fisher, CEO, Toynbee Hall David Alcock, TriBorough Strategic Relationship Manager John Smith, Director of Consultancy, Civil Eyes Research David Brindle, Public Services Editor, The Guardian Madeleine Cooper-Ueki, Programme Manager, NDTi Colin Capper, Services Development Manager, Alzheimer’s Assoc. Natasha Howard, Service Development Officer, Alzheimer’s Assoc. Mark Brangwyn, Head of Community Services at London Councils Richard Elphick, Market Development L.B. Camden Bronwen Jones, Assistant Manager, Kingsgate Resource Centre Juliette Hagan, Assistant Manager, Charlie Ratchford Resource Ctre Tracey McDermott, Dementia Befriending Co-ordinator – Age UK – Camden Anna Betz, OT–Camden Memory Service Sarah-Lou Morris, Carer (Member of CCS) Mary Boyarski, Carer Marijke Post, Social Worker/Re-enablement Lead – LB Camden Nicola Lane, Artist & Carer Sarah Stuart, Student St Martin’s
  • 30. Spirit of Creation Team: Facilitators: Kevin Gavaghan Rupert Angel Robert Holman Observers/Outcomes: Chris Carswell Kate Stott Iain Russell Photographer: Gemma Taylor Colum Lowe, Manager, Red & Yellow Care Sarah Gavaghan, Entrepreneur Fintain Coyle, Inventv Productions/Brainhub Joey Tadiar, Apple Callum Sinclair, Apple Chris Gage, MD, Ladder to the Moon Chris Minett, M.D. Positive Ageing Sarah Reed, M.D. Many Happy Returns Iain Russell, Independent Consultant/Chair of EMEA Charity Robert Evans, Consultant, Guideposts Trust Christine Megson, Meganewswest Limited Peter Stevens, M.D BOP Training Cecilia Yardley, Senior Partnerships Officer, Parkinson’s UK Samera Khokar, Toynbee Intern Adam Pankhurst, Toynbee Intern Emily Shackleton, Nottingham Graduate studying MA in Interactive Journalism ‘Doing Dementia Differently’ Workshop Participants
  • 31. Diagnosis Project: Invitation Big Question: • “In the absence of a coherent response from one’s GP the Big Question is how do we take the tens of thousands of sources of information about dementia and turn them into a simple process which patients and carers can use to discover whether they have the disease and whether they can begin to learn new practices and behaviours which will helpful as the illness progresses ?” Objectives of Workshop: • Gather the right mix of participants to produce two/three ways forward – o That meet the needs of the Diagnosis Project Outline o Offers a better approach to Dementia Diagnosis o Opens up new uses of technology involving analogue and digital partners Participants use and become proficient in the 4-stage process: • Discovery/Generation/Synthesis/Enterprise ‘turning good ideas into valued services and products’

Hinweis der Redaktion

  1. http://www.wordle.net/create http://www.tagxedo.com/ Early diagnosis Early intervention Medication Been on 10 year journey National Illness Service National Wellness Service National Health Service Dementia Screening as a default at 65-70-75 No awareness of scale of problem Diagnosis Opt In Opt Out First Signs/Episode(s) Dismissed. Denial? Simpler diagnosis MMSE on Internet With GP? 3 years from first ‘episode’ GP Education The ‘Light bulb’ moment A guide to living with dementia (current info worse than an iPhone manual) Legitimise carer role and secondary ‘advisers’ Empathy from non-carers Carer by necessity, not choice How to navigate the care (and health) system No holistic journey through care “THE CONVERSATION” Remove Isolation Shrinking World De-stigmatise it The family’s secret Anti-social Normalise it Get it in the open Existing services need to justify themselves with proven outcome to continue Potential issues accessing internet info etc if elderly and not connected Finance pressures on activities Drugs/Medical lack of sufficient incentive for NPD (+speed) How do individuals know what is available and how to know what is most suitable? How do you reach people with dementia but are not using/have minimal contact How do you recognise the signs of dementia? How do we help people feel more comfortable telling others that they have dementia iPad can be a tool to spark interactions (e.g. photos/music) Create an environment suitable for elderly to meet technology in easy way Bridge – younger to inform/share technology with old Older people with fear of technology Encouragement Technology connection Grandparents and Grandchildren Encourage younger volunteers (e.g. through qualification, education points) How do you deal with protection / risk issues with contact introduced Interaction with other people – how to make this part of the lives of people with dementia? What can we do for enjoyment? How do we carve out the space for a person with dementia? How do we deal with the lack of time? How do we give people interactions and times? What is it that stops people talking/asking people with dementia their opinions on planning? How do we change the ethos of those organizations including people with dementia in the planning of services? How do we include people with dementia in planning of services? How do we tackle the public assumptions that are made? Is it a stigma issue? How to get community to realise how it feels to a person with dementia How to get more empathy What do we do to tackle stigma? What can we do to enable people to know they can stay in peoples lives and help in some way? (a network) When you are working – how do we support younger people with dementia? How do we ensure people remain included and connected? How can we disseminate the evidence from the inclusion field? How do we <COULDN’T SEE THIS ON PHOTO> 2nd stage / 1st stage How do we socially encompass all stages of life? How do <COULDN’T SEE THIS ON PHOTO> dementia Knowledge and support for families and friends How do we provide more support for families / carers? How do we make people more aware? Provide more knowledge? How can we benefit those people with dementia who are not using statutory services? What does collaborative leadership look like for dementia? What is the real cost of dementia? i.e. including impact on support network How can society work differently? What is the value of connection? Can we rebuild community using technology? What works well and how do we share / disseminate this information? How can we attribute a value to the cost of dementia compared with other cultures? Has any country got it right? (i.e. learn from other countries like Netherlands) What have people with dementia found most useful? How do we get investors excited? i.e. incentives like tax breaks What services do those who care for people with dementia value most? How to make dementia innovation ‘sexy’ What are the constraints that are holding innovations back? Who gets to make decisions about use of resources and budgets? What services do people with dementia find most valuable? Who are we doing the work for? Person – family – service provider? What is counted as a cost for intervention? i.e. added infections once hospitalised Does personalization work? Can it be made to work for people with dementia? What is the unmet need? Where can we look – where is interesting practice? Media representation of dementia ‘age’ is a negative word Use of Technology -Tablets -Apps -Accessibility How do we support the person. How they are and how they might be. Future focused How do we celebrate in dementia? Finding positives Support based activity Gap around grief and support of family members At what stage do people go beyond the family? When do services get involved? How do we value the carers (professional) around provision of support to those with dementia How do we raise awareness of dementia to better support people? What is grief? -Adjust to new situation -Death -Nothing to look forward to People living and working longer - Inability to work longer if impacted Plan for later life – statement of wishes Families are geographically dispersed Generational attitudes to saving / preparing for the future Multicultural diversity Loss of self-confidence and independence Age gap between young and old Opportunity for mutual benefit Too easy to obtain debt We teach our kids that debt is normal Family structures have changed Cost of care Perceptions and diagnosis Connected & cost effective (a positive!) Accessibility & training help Pace of change Automated services not effective for elderly (e.g. bill payment, automated telephone systems) Elderly more vulnerable to cold calling & automated payment services Age gap between young and old Opportunity for mutual benefit