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Towards best practice in dementia care… for everybody
IXICO
• Founded in 2004
• Working with 9 of top 15 pharma, primarily in safety and efficacy testing of Alzheimer’s Disease drugs
• 2013- Started translating technologies to diagnostic support tools for dementia
Health Innovation South London
• One of the Academic Health Science Networks established in 2012
• The HIN have a dementia theme
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About Us- Background
Dr Kate McLeish- product lead
Dr Hugo de Waal- Clinical Director of the dementia programme, Consultant Psychiatrist
About Us- Collaboration
• IXICO and the HIN started working together in early 2014 in an initial 6 month SBRI funded project
• The collaboration brings together IXICO’s • Dementia expertise,
• Digital health product development resource
• Strong links with academia and pharma
• With the HIN’s• Clinical domain expertise
• Network of local and national stakeholders (from Commissioners to Ambulance service to 3rd Sector)
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“90% of people feel unsupported after a dementia diagnosis. Although diagnosis rates are improving, many people are not given adequate support to come to terms with their diagnosis and manage their condition.”
Right to Know Campaign
The Need: Connecting Everyone in Person Centred Care
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Improving support to residents and carersImproving quality and efficiency of servicesReducing unplanned costs and crisis points
Commissioners
Work collaboratively and innovatively using whole society to improve patient outcomes and
address the growing burden on care systems
3rd Sector & Patient Advocacy
Dementia most feared condition in over 55sPost-diagnostic support inconsistent
40% feel lonely, 90% feel unsupported
Empower Patients
Supports individuals and carers to cope better Help carers manage their own health needs
Reassurance in securing outside help
Support Carers, Friends & Family
Keep patients living independently for longerManage integration of health and care servicesEase transitions between care settings
Social & Community Care Providers
25% of all hospital beds occupied by people with dementia – facilitating smoother dischargeProvide excellent care to patients and carersMeasure and improve interventions & outcomesIntegrated, efficient, low cost service delivery
Healthcare Service Providers
Person with
dementia
Family and Carer
Trained Facilitator
Health and Social
Care
Original Concept
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Co-production
Self management
Autonomy
Control
Person with
dementia
Increased quality of life
Our Approach• Co-design is key
• MyBrainBook should be a tool for people with dementia and their families scoped, designed and evaluated at each stage by this group
• MyBrainBook will evolve through Agile development to ensure it is both relevant and usable
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Here’s what they had to say…
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“It isn’t just about the medicines – it makes you more a whole person”
Person with dementia
“It will be really useful for the carers, if they look at it they get to know me”
Person with dementia
“It brings things up. I’ve realised I’ve forgotten things dad can and can’t do”
Daughter of person with dementia“It will be good to not have to repeat myself about health and medicines, just to share it”
Person with dementia“It made me think about things. I’m in such a routine there is not much time to think about the person”
Carer
Beyond Phase 1After the prototype stage we had to:
• Build a tool that was fully functional including security, database
• Add additional features-particularly around adding and communicating with contacts
• Change the layout to be able to continue to extend the system
• Make colours more user friendly
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How will it work?
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Trained facilitator guides through the process
On-going interaction to develop profile and
support plan
Regular engagement with family, friends building informal support networks
Relevant sections shared with health and social carers to help
maintain independent living
End of life planning/Support
for possible transition to care
home
The best time to start is just following diagnosis, but people can start at anytime
Reminiscence and Stimulation tool
Primary Care
Secondary Care
Acute Care Community Care
End of Life
Social Care
A&E and hospital re/admissions
Self-care and care in the community
Promotes independence, reduces social isolation
Delay transition to residential care
Reduce costs
Person-centred, integrated support
Outcomes
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What is today?People: Contacts (family, friends and professional),
social engagement
About Me: Personal profile, Lifestory,
interests & hobbies
Photos and Music: including reminiscence
application
Health & wellbeing: Clinical information, Outcome
measurement tools
Plans: Personal Support and
Urgent Care Plans
Diary: Daily routine, tasks and reminders,
special events
In current versionLimited in current versionPlanned
Personalised Care
Looking to the future
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Clinic Home
Patient centric disease management
Pre-diagnosis to end of life
Stratifying PatientsDeveloping and Evaluating New Interventions
Clinical Practice Improved Outcomes
Example
• Jessica Kipling is a 75 year old female
• She was diagnosed with Alzheimer’s Disease last year
• She lives with her husband Frank who is also her carer
• Let’s start a MyBrainBook profile for Jessie
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We’ll start by adding some important people in Jessie’s life
We can add contact details of family, friends, health and care workers or even the electrician for when the oven stops
working again!
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Paul
Paul
Interest: Collections:
Stamps
I’d like to help Ashley make his own album
I will ask Jo to buy Ashley an album and will get some of the new special stamps from the post office on Wednesday
Jo Important 22/4/2015
WhenCategory Aspiration or Concern What will you do?
Support
Other Features
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Current Use
• We have completed product evaluation with people with dementia and their carers – this work was led by Innovations in Dementia (CIC)
• We are rolling out MyBrainBook• Across the North of England as part of Project Cygnus
• Within Lewisham with Mindcare
• We are making MyBrainBook available to targeted groups from May 2015
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