Towards best practice in dementia care for everybody

Transcription

1 Towards best practice in dementia care for everybody 1

2 About Us- Background IXICO Founded in 2004 Working with 9 of top 15 pharma, primarily in safety and efficacy testing of Alzheimer s Disease drugs Started translating technologies to diagnostic support tools for dementia Dr Kate McLeish- product lead Health Innovation South London One of the Academic Health Science Networks established in 2012 The HIN have a dementia theme Dr Hugo de Waal- Clinical Director of the dementia programme, Consultant Psychiatrist 2

3 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 3 rd Sector) 3

4 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 4

5 The Need: Connecting Everyone in Person Centred Care Empower Patients Dementia most feared condition in over 55s Post-diagnostic support inconsistent 40% feel lonely, 90% feel unsupported Support Carers, Friends & Family Supports individuals and carers to cope better Help carers manage their own health needs Reassurance in securing outside help Healthcare Service Providers 25% of all hospital beds occupied by people with dementia facilitating smoother discharge Provide excellent care to patients and carers Measure and improve interventions & outcomes Integrated, efficient, low cost service delivery Commissioners Improving support to residents and carers Improving quality and efficiency of services Reducing unplanned costs and crisis points 3 rd Sector & Patient Advocacy Work collaboratively and innovatively using whole society to improve patient outcomes and address the growing burden on care systems Social & Community Care Providers Keep patients living independently for longer Manage integration of health and care services Ease transitions between care settings 5

6 Original Concept Health and Social Care Self management Co-production Increased quality of life Trained Facilitator Person with dementia Person with dementia Autonomy Family and Carer Control 6

7 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 7

8 Here s what they had to say It isn t just about the medicines it makes you more a whole person 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 made me think about things. I m in such a routine there is not much time to think about the person It will be really useful for the carers, if they look at it they get to know me Person with dementia It will be good to not have to repeat myself about health and medicines, just to share it Person with dementia Carer 9

9 Beyond Phase 1 After the prototype stage we had to: Build a tool that was fully functional including security, database Add additional featuresparticularly around adding and communicating with contacts Change the layout to be able to continue to extend the system Make colours more user friendly 11

10 How will it work? The best time to start is just following diagnosis, but people can start at anytime Trained facilitator guides through the process On-going interaction to develop profile and support plan Regular engagement with family, friends building informal support networks End of life planning/support for possible transition to care Relevant sections shared with home health and social carers to help maintain independent living Reminiscence and Stimulation tool 12

11 Outcomes Primary Care Person-centred, integrated support End of Life Secondary Care Self-care and care in the community Promotes independence, reduces social isolation Acute Care Community Care A&E and hospital re/admissions Social Care Delay transition to residential care Reduce costs

12 In current version Limited in current version Planned What is Plans: Personal Support and Urgent Care Plans today? People: Contacts (family, friends and professional), social engagement About Me: Personal profile, Lifestory, interests & hobbies Diary: Daily routine, tasks and reminders, special events Photos and Music: including reminiscence application Health & wellbeing: Clinical information, Outcome measurement tools 14

13 Looking to the future Patient centric disease management Clinic Pre-diagnosis to end of life Home Developing and Evaluating New Interventions Stratifying Patients Clinical Practice Personalised Care Improved Outcomes 15

14 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 16

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16 We ll start by adding some important people in Jessie s life

17 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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23 Category Aspiration or Concern What will you do? When 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 Support

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27 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