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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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