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Dementia Clinical Launch Event 12 February 2014
@HINSouthLondon
1.30pm Welcome David Bradley, SRO Dementia Programme
1.35pm Overview of the AHSN, Chris Streather, Managing Director
1.45pm Dementia project in Wandsworth, Mark Butler,
Dementia Services Development Centre, University of Stirling
2.00pm The National Context, Alistair Burns, National Clinical Director
for Dementia in England
2.10pm Hearing from people living with dementia
Linda and Paul Sinclare
Gary and Jackie Whiting
2.40pm Break
2.55pm Overview of the South London HIN dementia programme
Rebecca Jarvis, Programme Manager, Nada Savitch,
Innovations in Dementia and Hugo deWaal, Clinical Lead
3.15pm Workshop, Sam Hudson, Programme Manager
4.30pm Next steps
4.35 pm Close
Agenda
David Bradley Senior Responsible Officer, Dementia
Chief Executive South West London and St George’s Mental
Health Trust
Welcome
• Health Innovation Network is the Academic Health Science Network
(AHSN) for South London
• The Government has established 15 AHSNs nationally
• All AHSNs have 4 key objectives:
About Academic Health Science Networks
Focus on the needs of patients and local
populations
Speed up the adoption of
innovation into practice to
improve clinical outcomes and
patient experience
Build a culture of
partnership and
collaboration
Create wealth through co-
development, testing,
evaluation, early adoption and spread of new products and
services
Our distinctive features
The Health Innovation Network has a number of distinctive
features:
• Strong public health ethos, and integration of mental, physical
and social care
• Builds on local academic expertise, with a rigorous approach to
evaluation
• Integral involvement of patients and public and third sector
• New industry relationships across all aspects of our work
Working across South London
The National Context
Alistair Burns
National Clinical Director for Dementia in England
Dementia project in Wandsworth
Mark Butler
Visiting Fellow, Dementia Services Development
Centre, University of Stirling
DSDC
DSDC is an international centre of
knowledge and expertise dedicated to
improving the lives of people with
dementia.
For over 25 years we have worked with individuals and organisations
• to improve the design of care environments
• to make communities dementia-friendly
• to influence policy and to improve services for people with dementia
http://dementia.stir.ac.uk/
ideas
education
design
housing
creativity
change
Commu-nities
information
These eight domains
define the work of the
DSDC and represent
key areas which make
a positive difference to
people with dementia
and their carers
Dementia in Wandsworth Project
• What is the meaning of dementia in different communities and
what are the responses to it?
• What are the implications for community resources and local
services?
• Focus on communities of faith – Muslim, Black-majority church
and other Christian
• Parallel project in Kingston – mainly Korean and Somali
• Funded by SWL StG Mental Health Trust
• Partnership with Wandsworth Community Empowerment
Network
• October 2013 – May 2014
Approach
• Conversations with, and within, communities where dementia can
be brought to the surface
• Structured and unstructured conversations in different locations at
existing gathering places
• Open approach to who has knowledge, authority and influence
• Combination of
• trusted facilitation and empowerment network already working
within communities on services, asset and social provision
• external international dementia expertise sensitive to the what
makes communities dementia-friendly and committed to
sustainable change
Some Reflections - 1
• Understanding of dementia is low – denial high - but communities
are dealing with difficult stuff all the time
• “Professional” services are distrusted – what matters is knowledge
that is alive within the many networks that make up communities
• At first demand is for information around cure, cause, prevention,
then it becomes more about capacity and response
• Central response to dementia in conversation is about the state of
social connections and relationships
• Dementia really only surfaces as an integral part of discussions on
• Healing and coping
• Ageing and families
• Death and death
Some Reflections - 2
• Overriding need to focus on what the communities themselves can
deliver in their own different ways
• Communities feel they are under threat by changes which they see
as beyond their immediate influence
• Places where people came together physically to interact are
reducing – where do you go now for difficult conversations?
• Same issues appear differently in different communities - but each
shares a common interest in what nurtures “caring” within their
existing relationships
• The place to start with dementia is often elsewhere – in promoting
good food and cooking, social connection, family, faith
• If you start by looking at services you miss issues like love,
fellowship, hope, faith, belief, connection and community which
determine what support really exists for people
Implications - 1
• Coaching and support is needed to enable learning around what
dementia means for communities – and equally “unlearning”
• To place people with dementia at the heart of things requires
• conversations with the many where they are – less on the proxy
voices of the Third Sector or individual service users
• insight into the pivotal role of co-production and asset-based
community development – less on “services” provided to people
• Improvement in dementia outcomes depends more on capacity
development and response in communities than current approaches
by government, professionals and the voluntary sector
• Diversity requires diverse responses – a singular (statutory)
approach may give the semblance of progress but it will miss many
people
• Resources are simply being allocated to the wrong priorities
Implications - 2
• The Dementia Challenge is not reaching these communities
• The term “dementia-friendly community” looks irrelevant and
insensitive to these communities – national accreditation looks
patronising and remote
• The real Dementia Challenge for AHSN is
o to work with and for local communities
o to stand for genuine evidence about what works
o to advocate for long-term social progress over temporary
political interest
o to focus on work that helps build sustainable understanding and
capacity wherever it is needed.
Hearing from people living with
dementia
> Linda & Paul Sinclare
> Gary & Jackie Whiting
Overview of the HIN Dementia
Programme
• 13,031 diagnosed with dementia
• 15,505 estimated undiagnosed
• Average diagnosis rate is 46%
• Ranges from 39% - 59% in South London boroughs
• Prevalence expected to increase by 13% by 2020
• About 334,000 Londoners aged 65 and over live alone
Dementia in South London
The Vision
People with dementia
feel supported &
included in society &
have confidence that
their wishes will be
respected and acted
upon
Staff really
understand us
(people with
dementia) so that
we can plan our
future together
People have
the facts and
know how to
access
support Carers are
supported to be
proactive in
preventing crises
and steps in
decline Accessing
support is
as easy as
using an
iPhone
Timescales
DEC 14 OCT 14 NOV 13 MAR 14
Set up
Idea generation and
prioritisation
Phase 1
Review and
planning
Phase 2
Crowdsourcing:
• Gathering ideas from a
wide range of stakeholders
• Launched on 10 January
2014
• 165 people from South
London invited to
participate
• 45 people (27%) have
joined the discussion
Shadow event on 23 Jan:
• 11 people with dementia
• 6 carers
• From Croydon, Lewisham
and Wandsworth
Engagement to date
• Use of volunteers
• Risk stratification
• Self care
• Advocacy groups for people with dementia
• Use of assistive technology
• Ensuring people get the medications they need
• Workforce development
Crowdsourcing – most discussed ideas
• Improve quality of NHS support to care homes
• Workforce development – review and evaluate and package
up the best bits for dissemination
• Music mirrors as a tool for meaningful contact
• Set up support groups for people with dementia/carers
• Support people with dementia to have a role in awareness
raising and training
Crowdsourcing most rated ideas/ challenges
• Co-produced care planning
• Involving people in decisions about them
Supporting each other is important – but we need help
• Support and encouragement for families
–‘We couldn’t manage without them’
–Families needed encouragement to find out more
• Peer support
–‘It’s good to have time to talk about things with each other’
–Different groups – for people with dementia and carers
• Self-help – a community of support
–‘We can all learn from each other’
–Small amount of professional support for such groups or
communities would have a big impact
What people told us:
Support from professionals
• Tailored help at different stages
– People at different stages need different support and different activities
• Support needs to be available consistently
– Support should not be ‘all or nothing’
• A single point of contact/person for help
– You don’t know who can help with what
– ‘You can’t time your problem for when the support worker comes’
– A helpline might be useful but cannot offer all the help that might be needed, and face to face support is valued
What people told us:
1. Co-creating experience metrics
– Identify what kind of care people need and want
– Use these metrics to identify where improvements are
needed
2. ‘My Brain Book’
– Information about me and for me
– Information that tells you what kind of person I am
– Compiled by me
– Seen by people and services of my choosing
– Includes information on how to keep me well, and what to do
if things go wrong
– Live and up-to-date
What we have committed to already:
Workshop
Measurable
Can be adopted at scale
Can evidence impact
Improves outcomes that matter to people
Realistic
Best done by the HIN
Prioritisation criteria
Co-produced care planning
Make sure people are involved in decisions about them
• Improve quality of NHS support to care homes
• Workforce development – review and evaluate and package
up the best bits for dissemination
• Music mirrors as a tool for meaningful contact
• Set up and expand support groups for people with
dementia/carers
• Support people with dementia to have a role in awareness
raising and training
Most rated ideas/challenges
• Introduce yourself to the other people on the table (10 mins)
• Review the 5 most rated ideas/ challenges and discuss
whether anything is missing (15 mins)
• If you’ve identified things we’ve missed, choose one to add
to the template on your table (10 mins)
• Nominate someone to ‘pitch’ the most important
idea/challenge in 60 seconds to the whole group
• By yourself, use your 5 stars to vote for your favourite ideas
on your table or someone else’s (10 mins)
Workshop
• Keep contributing via crowdsourcing website
• Look out for information about Associate Clinical Lead role(s)
• Seek further views of people with dementia and carers
through local groups
• Work with the care homes forum
• Further partnership working with the Strategic Clinical Network
and other AHSNs
• HIN dementia team to develop ideas further
• Form project teams and start work
• Take firm plans to HIN Board in April 2014
Next steps
