Alzheimer’s Society Dementia-friendly technology (DFT) workshop at the Telecare Services Association's International Telecare and Telehealth Conference, Celtic Manor Resort, South Wales http://www.telecare.org.uk/conference The workshop discussed how the Dementia-friendly technology charter came about and the feedback received as well as what signing up to the charter means for organisations. Find out more at alzheimers.org.uk/technologycharter

1. Dementia-friendly technology charter Workshop
Ali Rogan DFT Chair of task and finish group for Alzheimer’s Society, External Affairs Director, Tunstall Healthcare
Rhianwen Jones North Wales Regional Telecare Strategic Manager, Galw Gofal, Colwyn Bay
David Williams Telecare Project Manager, Sewic (South East Wales Improvement Consortium)
18 November 2014 12.00-13.00

2. Outline
•Introductions and Context
•Hearing from people with dementia - video
•The DFT charter – ambitions, learning, next steps
•Dementia friendly technology in
–North Wales
–South Wales
•How to best achieve the charters’ aims
2

3. Prime Minister’s Challenge
3

4. Sub Sector Task & Finish Groups
4
Civil Society
Arts
Technology
Financial Services
Sport & Leisure
Transport
Rural Communities
Retail
Employment
Maintaining Personal Wellbeing

5. Video
5
http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=2699

6. General thoughts on technology?
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Seemed a good idea, but you would need to get used to it
Everyone is different, some people see them as intrusive, others view them as another way to stay as independent
They need to be user friendly
Can offer families peace of mind
It should be introduced earlier in order for people with dementia to be able to be involved in the decision making and to have the opportunity to familiarise themselves with the technology
Direct feedback from the Alzheimer’s Society Service User Review Panels

7. What difficulties do you think could be made easier by technology?
Peace of mind and reassurance
Alarms and sensors for independence
Feels a bit like ‘Big Brother’ is watching you
Medication dispensers
This would be really useful – I always find it difficult to remember whether I’ve taken my tablet
Safer Walking Technologies
It would be like being watched, someone keeping an eye on you
It might be nice as it would be like someone walking alongside you, able to lend a hand if you got lost
Direct feedback from the Alzheimer’s Society Service User Review Panels
It’s like having someone to come and stand by you

8. Dementia Friendly Communities – Technology task and finish group
•Enable every person with dementia to have the opportunity to benefit from technology appropriate to their needs
•To outline and encourage high level principals and best practice for those organisations providing services to people with dementia
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Aims of the Dementia-friendly technology charter
•First meeting 15.11.13
•Brought together over 33 organisations
•and many more individuals
•Charter launched to media 17.6.14
•Physical launch Alzheimer’s Show 4.7.14
Journey

9. Dementia-friendly Technology Charter contributors
•Alzheimer’s Society service user review panels
•ADASS West Midlands Telehealthcare Network
•Advanced Digital Institute
•Alzheimer's Society
•Association of Directors of Adult Social Services
•Bournemouth University, Dementia Studies Unit
•British Assistive Technology Association
•BT
•Bury Council
•Children's Charities' Coalition
•City University London
•Design Council
•Doncaster Dementia Strategic Partnership
•Halton Borough Council
•Hertfordshire County Council
•Just Checking
•Local Government Association
•London Borough of Croydon, AZTEC Centre
•London Fire Brigade
•Mid Cheshire Hospitals NHS Foundation Trust
•National Museums Liverpool
•NHS England
•NIHR Dementia and Neurodegenerative Diseases Research Network (DeNDRoN)
•One Voice for Accessible ICT Coalition
•Public Health England
•Registered Nursing Home Association
•Sanctuary Supported Living
•South London and Maudsley NHS Foundation Trust
•Stockport Council
•Telecare Services Association
•trueCall Nuisance phone call blocking
•Tunstall Healthcare
•University Hospitals Birmingham NHS Foundation Trust
•Westminster Rehabilitation Services Central London Community Healthcare NHS Trust

10. Dementia-friendly technology charter
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www.alzheimers.org.uk/ technologycharter

11. 11

12. Types of technology
Safety
Enabling people with dementia to live as fully as possible without putting themselves and others at risk
Health
Supporting people to manage, assess and treat co- morbidities and improve health outcomes
Enhancing
Devices or apps to improve the quality of life for people with dementia
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13. Components of a good quality technology service
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Service Blueprint
Standards
Timely referral
Timely assess- ment
Ethics and Consent
Service set up
Monitoring
Response
Re- evaluation

14. DFT charter - First year ambitions
Charter published and communicated
Work towards having all CCGs*, local authority and housing commissioners signed up
All service and technology providers signed up
14
*CCGs = Clinical Commissioning Groups

15. What does signing up to the charter mean for my organisation?
Recommendations for commissioners, providers and suppliers
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•The statutory right to a social care assessment should always include a consideration for dementia-friendly technology
Assessment
•A single, simple to use, updated web resource for dementia friendly technology should be developed
Up to date national resource
•Accessible and easy to find information that lists where technology is available in their local areas. This info should reference and include a link to this charter
Local resources
•Technology providers should take into account the specific needs of people with dementia when developing care services that use technology
User friendly technology

16. Supporting People with Dementia
Call Monitoring Centre Perspective
Rhianwen Jones
North Wales Regional Telecare
Strategic Manager

17. North Wales Regional Call Monitoring Service
Bilingual Welsh/English
24/7
22,500+ connections (52% aged over 80yrs)
Receive over 54k calls per month
Enable people to live in their own homes
Maximise independence and potential
Supporting people in a safe environment with dignity

18. Current Services
•Social Alarms
•Telecare
•GPS tracking
•Telehealth
•Telephone Check Calls
•Lone Working
•Carer Cards
•Out of Hours services e.g. Housing, Social Services EDT
•Disaster Recovery & Business Continuity

19. Social
Managing Risk
Environmental
& Security
Social
Medical
Nutrition
Cognition
Mobility
Fire
Flood
Gas
Intruders
Cardiac arrest
Medication
Asthma attack

21. Effective Communication Required
for appropriate response
Rapid
Response
Team
Lifting
service
24 Hour
--Nurse
24 hr. Home Care
Relatives
& friends
Mobile Warden
Duty Social Worker
Community
Alarm
Centre
Out-of-hours
GP
Fire
service
Ambulance
Police
Emergency
plumber
24 hour
Gas fitter

22. 3 Key Elements for Success
1.Prescription of the correct equipment
2.Compliance
3.Response

23. •Dementia - a term used to describe various different brain disorders
•Symptoms include loss of memory, confusion, problems with speech and understanding
•Over 100 different types of dementia
•Prevalence rates in UK is 1:5 people aged over 80 + have dementia
Challenges of Dementia

24. Common Types of Dementia
•Alzheimer’s Disease: Progressive - 62% of cases. Ambloid plaques cause damage to neurone & brain tissue. Ability to remember, reason, understand & communicate gradually decreases.
•Vascular Disease – 3 types. Arteriosclerotic: reduction of oxygen to the brain. Vascular: sudden onset dementia following a stroke. Multi-infarct: a gradual onset usually following a series of mini strokes.
•Korsakoffs Syndrome. Condition related to alcohol abuse and thiamine(vitamin B1) deficiency. Disorder resulting in a memory defect in which new information fails to be learnt.

25. Common Types of Dementia
•Dementia with Lewy Bodies: 15% of cases. Protein deposits called Lewy Bodies cause damage to nerve cells. Symptoms similar to Parkinson’s – stiffness, slowness of movement, tremors etc. No visual features e.g. hallucinations.
•Picks Disease – Damage to the frontal or temporal lobes of the brain causing dementia. These parts of the brain are responsible for behaviour, judgement, planning, emotional response and language. People may behave in an unacceptable manner, have little concentration and follow repetitive compulsive routines

26. Stages of Dementia
Slipping: gradually becoming aware of minor lapses in memory.
Suspecting: “normalising” of events becomes less successful.
Covering up: a conscious deliberate effect is made to hide difficulties.
Revealing: being confronted with patterns of loss that cannot be ignored.
Confirmation: open acknowledgement of the problem - diagnosis
Maximising: use of adaptive techniques to compensate for losses.
Disorganisation: cognitive difficulties and associated behaviour an increasingly dominant feature
Decline: further loss of cognitive and physical ability

27. How do we know?
What type of dementia do they have?
What stage of dementia are they – early stages or progressed?
How is their cognition and communication abilities?
What is their normal routine?
What are their usual anxieties?
Do they wonder out?
What risks to they face?
Are they having a good or a bad day?

28. Systems in place
Referral pathways which collect detailed information
On screen information for a positive response
Incident reporting – escalation of information for needs assessment and review
Staff training awareness & developing experience
Formal response service to support carers in most areas
Records of information – shared
Identifying trends in behavioural patterns
Learning from incidents and policy review
Statistical analysis and predictions for service planning
Consultation for service & business planning
Networking and regional forums

29. How can we improve?
Element
Prescription of the correct equipment
Compliance
Response
Issues
What’s available? How do we maintain knowledge? How do we ensure Positive Risk Taking and trust in Telecare? How should dementia be factored into business models? Training? How do we ensure in-depth understanding of dementia and how it affects every individual?
How can we ensure robust initial & regular update of information? How can we ensure training for service users & carers? How do we focus on carers?
Who responds? What relationship do we have with emergency services & health? How can we share information effectively? Support for carers? Appropriate training?

30. Galw Gofal Contact Details
Rhianwen Jones
North Wales Regional Telecare Strategic Manager
Tel: 01492 577781 or 07557 480320
E-mail: rhianwen.jones@conwy.gov.uk
Extracts from:
SCiP presentation 2014 provided by Dr Kevin Doughty.
dr.k.doughty@btinternet.com Mob: 07810797971
Supporting the Dementia Journey by Carolyn Goble
Head of Learning Development, Person Shaped Support, Liverpool
Carolyn.goble@pss.org.uk T: 0151 702 5528 Mob: 07595 863 202

31. A perspective from SE Wales
David Williams

32. Effective care and support does mean working together – across health and social care – plus housing sector and care providers
Role of SEWIC to facilitate and support links – Assistive Technology and Accommodation with Care Reference Groups
Workshop events – linking care and accommodation providers - encouraging the development of partnership working. Mapping out potential schemes for re-development and planned new developments
Regional linkage to suppliers – trial of new equipment, feedback and operational views – Age Connect day services example
Social Care and Wellbeing Act 2014 – greater emphasis on prevention, early intervention, information/advice/assistance, new models of care

33. There is a new challenge is emerging in the form of an increasing number of people with early onset of Alzheimer’s. They remain physically able and want to continue to live their lives as they always have done – going out and about, doing the shopping, visiting friends and family, and going on holidays. But their condition can limit them to their home and immediate area.
Traditional telecare, which is dependent on a fixed telephone line, only compounds this by offering help but only in the confines of a user’s home. This not only limits people’s horizons but means they often need a carer when leaving their homes despite being active.
Engagement with carers is vitally important – to support the caring role and to understand each individual situation. Medication support and reminders are a useful tool – ICF project in Aneurin Bevan Health Board

34. Cwmgelli – Blackwood, in Caerphilly.
‘A simple and safe environment is what people with dementia want, they want to make it their home and put their stamp on it.’ – Member of Review Panel.
22 bed scheme for younger people with dementia (under 65’s) with family suite and external pavilion building for activities. Seren Group are working closely with ABHB and Alzheimer's Society.
Currently on site and due to complete Jan/Feb 2015.
Telecare overlay developed through linkage to Merthyr demonstration facility (Kier Hardie Health Park) and linkage with Carers group

35. Mr C, aged 75 suffers from the early onset of Alzheimer’s and has been trialling the a mobile device for a month. He likes to maintain his independence and takes enjoyment from going into town for a coffee and a shop. Unfortunately due to his condition he would sometimes get lost, leading to distress and worry for Mrs C, his carer and family.
By using a mobile device Mr C is now able to go in to town independently. If he becomes distressed he can easily contact his carer or family within the touch of a button. His family members and carer’s are also able to contact him through the handset. The service has greatly improved his confidence to go in to town allowing him the freedom and independence he requires, and giving his family and carers reassurance.

36. Mrs B had dementia and had lived in an EMH unit in Residential Home for 3 years. She appeared settled and had a good rapport with the staff. Staff had noticed that during the night Mrs B was attempting to climb onto the white sink basin in her room believing it to be a toilet; this was putting her at huge risk of falling and loss of dignity.
Mrs B`s Social Worker carried out a Mental Capacity test in order to identify if Mrs B had the mental capacity to make an informed decision about the provision of Telecare equipment. This test identified that Mrs B did not have the mental capacity to make an informed decision about the provision of Telecare equipment so a Best Interest decision was made to provide the least restrictive option of Telecare provision in order to keep her safe.
An Infra-Red Bed Exit sensor was provided which alerted staff if Mrs B attempted to get out of bed. This enabled staff to assist Mrs B to her toilet, provide her with reassurance and settle her back to bed safely.

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38. Discussion
•How best to achieve the aims of the charter
•What else do we need to do
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39. Q&A Thank you
Ali Rogan alison.rogan@tunstall.com | @AliRogan
Rhianwen Jones rhianwen.jones@conwy.gov.uk
David Williams david.hartwellwilliams@torfaen.gov.uk