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Digital Timelines Project - 2014-1-UK01-KA204-000071

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Digital Timelines KA2 Adult Education Project

Reference: 2014-1-UK01-KA204-000071

United Kingdom - National research report (IO1)


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Contents Pages 3 – 7

• Background, overview and current situation in the UK Pages 8 – 12

• Table 1 – ‘Training that is on offer in the UK’ Page 13

• Types of digital interventions in the UK Pages 14 – 17

• Table 2 – ‘Selection of digital interventions which UK partners are familiar with, or have come across during the research’

Pages 18 – 20

• Types of non-digital interventions in the UK • Table 3 – ‘Selection of non-digital interventions which UK partners are familiar with,

or have come across during the research’ Pages 21 – 24

• Research and questionnaire findings Page 25

• Summary Pages 25 – 26

• References and Acknowledgements


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Methodology This report was compiled using a variety of secondary sources as well as primary research and includes: • Discussions with people from national support agencies including Alzheimer’s Society,

Age UK and the European Reminiscence Network (ERN) • Discussions with local care providers both day care and residential 24 hour care. • Extensive internet research • National published documents • Non-published descriptions of interventions to support reminiscence and other therapies. • The results of a survey to carers of people with memory loss Details of each source appear in the bibliography at appendix 1 Overview The report provides a current (February, 2015) overview of dementia in the UK, including political initiatives, numbers and costs involved, progress towards a cure, and the various support currently available. The focus of the report is on the promotion and development of support interventions both digital and non-digital which aim to provide the person with dementia positive interaction with carers and friends, with a particular focus on reminiscence. Purpose of the report The report will help the Digital Timelines project by informing the processes of training course development, piloting and development of example videos and instructional videos, by: • presenting current government policy, motivation and focus in this area • considering what current carers prefer and are familiar with in terms of technological and

non-technological support interventions • Considering selected current interventions to further our understanding of what has

already been developed, for what purpose and for which markets. Current UK situation There have been a number of government policies and challenges issued over the past eight years which drive much of what is being done around dementia currently in the UK ‘The Dementia UK’ report (Alzheimer’s Society, 2007) marked a step change in awareness of the gravity of the coming dementia epidemic and the worrying inadequacy of UK policy responses to this challenge at the time. The report contained the first comprehensive evidence-based estimates of the numbers of people with dementia in the UK, with future projections through to the year 2051. Services and treatments for people with dementia were reviewed, and the societal costs of dementia were estimated. This report contributed towards.

‘Living Well With Dementia’. Which is a national government strategy from the department for Health published in February 2009: This strategy provides a strategic framework within which local services can:


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• deliver quality improvements to dementia services and address health inequalities relating to dementia;

• provide advice and guidance and support for health and social care commissioners and providers in the planning, development and monitoring of services,

• provide a guide to the content of high-quality services for dementia.

The ‘dementia challenge’ was launched in March 2012 by the UK Prime Minister designed to make a real difference to the lives of people with dementia and their families and carers, building on progress made through the National Dementia Strategy. The challenge focuses on driving improvements in three areas health and care, (diagnosed, treated and cared for) creating dementia friendly communities (creating a system of recognition so that places and organisations can become ‘dementia friendly’, creating local ‘Dementia Action Alliances’ to network ideas and educating the public so that more people understand dementia and think about how they can make things better – the Dementia Friends programme is a central part of this) and improving dementia research to find cures and effective mechanisms and other areas of research. The dementia challenge is regularly updated to establish to what extent targets are being met. The quality work around therapy or ‘living well with dementia’, is being promoted by ‘Public Health England’, an executive agency, sponsored by the Department of Health and is being delivered and promoted by local public health services throughout the UK. In addition much development and community level work is being done by a number of national charities including Age UK, Alzheimer’s Society and Dementia UK as well as facilitator organisations that bring large groups of people together such as the Dementia Action Alliance. Within each area of the UK small organisations from many different backgrounds develop ideas often based on helping one or two people, which then escalate to helping a wider audience. There are many online ideas and tools to help people live well with dementia. Diagnosis Because of the huge cost of dementia, there is a focus by government on improving the diagnosis rate, in order to provide prescription drugs and care packages. (However some people think placing so much focus on this a rather misguided) Currently, the diagnosis rate in England is only 43% - lower than Scotland and Northern Ireland. Government wants to increase diagnosis rates so that they’re among the best in Europe by:

• making sure that doctors give 65 to 74 year olds information about memory services as part of the NHS health check programme, and refer them for assessment if they need it (from April 2013)

• Making £1 million available for innovative NHS projects to increase diagnosis rates through the Innovation Challenge Prize for Dementia launching a new toolkit to help doctors provide better support. In furtherance of this doctors have been offered £55 per diagnosis, which has caused consternation, as some believe that doctors are overpaid in the first place.

In the UK dementia is an umbrella term referring to a collection of symptoms, which may include memory loss and difficulties with problem-solving or language. It is a progressive condition caused by brain disease, currently without cure. There are around 100 different types of dementia. However Alzheimer's disease is the most common form, affecting 62% of those living with dementia in the UK. Many of these people will have a mixed pattern of dementia with the second most common type - vascular dementia - also contributing to their condition. This occurs due to the damage done to the small blood vessels in the brain. About


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850,000 people are formally diagnosed with dementia in UK (2015 estimate - but only 43% with the condition get a diagnosis).

Cost of dementia The cost of dementia in the UK is currently £26.3 billion, with an average cost of £32,250 per person. £4.3 billion is spent on healthcare costs, £10.3 billion is spent on social care (publicly and privately funded) and £11.6 billion is contributed by the work of unpaid carers of people with dementia. (Carers and families currently shoulder two-thirds of the cost themselves). A major consideration therefore is to try to keep people with dementia independent, living in their own house or with relatives for a long as possible, to try to relieve the increasing pressure on, the very costly 24 hour care option. Number of people with dementia The total age-standardised 65+ population prevalence of dementia is 7.1% (based on 2013 population data). This equals one in every 79 (1.3%) of the entire UK population, and 1 in every 14 of the population aged 65 years and over. Compared to the 2007 estimates, the current prevalence consensus estimates are slightly higher for the youngest (65–69) and oldest (90+) age bands and slightly lower for the intermediate age groups (80–89). The total number of people with dementia in the UK is forecast to increase to over 1 million by 2025 and over 2 million by 2051 if age-specific prevalence remains stable, and increases are only driven by demographic ageing. Additionally there are over 40,000 people with early-onset dementia (under the age of 65 years) in the UK. Developments towards a cure Alzheimer’s Society is sponsoring a number of projects to find a cure including:

• Getting a promising drug ready for clinical trials (Lancaster University) • Novel drugs for treating Alzheimer's disease (University of St Andrews) • Testing the effect of the diabetes drug Liraglutide in Alzheimer's disease (Imperial

College London) • How can we change stem cells into brain cells? (University of Nottingham)

Since the impact of a possible cure will likely be decades away, diagnosis and support mechanisms remain crucial. Dementia Friends and dementia friendly communities These have been encouraged as part of the Prime Ministers challenge and consist of individuals or organisations that undergo training to encourage a greater awareness of dementia. Other types of group support include ‘Alzheimer’s cafes’, carers groups and various other support groups, many of whom create online networks.


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The dementia-friendly technology charter In response to the UK Prime Ministers challenge on dementia, the dementia-friendly technology charter has been produced as part of the Dementia Friendly Communities strand. The charter, developed by a diverse working group, gives people with dementia and their carers information on how to access technology. It also provides guidance to health, housing and social care professionals on how to make technology work for people based on their individual needs.

The overall aims of the charter are:

• to help every person with dementia have the opportunity to benefit from technology appropriate to their needs

• To outline and encourage the implementation of high-level principles and best practice for organisations that provides services to people with dementia.

The charter includes

• First-hand accounts of living with dementia and their thoughts on how technology could help.

• How technology services can support people living with dementia and their family and friends, before diagnosis, after diagnosis, during a crisis and when there are other complex needs.

• A range of case studies and best practice, demonstrating how technology is making a real difference to people's lives.

• What a good quality technology service should look like. Issues to consider including ethics and consent and the re-evaluation of needs and outcomes.

• A set of key questions devised to be asked by commissioners, assessment teams and people with dementia and their carers prior to buying technology.

• Links to other sources for further advice and support. • to test the videos for use in other areas such as safety.

The UK partners to Digital Timelines will aim to sign up to this charter as soon as they are able.

Using technology Whilst not a solution for everyone, technology solutions can work in a variety of ways to support health, manage risks, provide enjoyable and stimulating activities and support loved ones. Technology offers huge potential benefits for people with dementia, whether it's a familiar gadget such as a mobile phone and TV or a specific telecare device to remind someone to take medication. Given the wealth of technological solutions available, it is useful to break these thematically down across three domains aimed at supporting, managing and improving people's lives:

• Safety: enabling people with dementia to live as fully as possible without putting themselves or 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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The early concept of the digital timelines videos fall into this latter category of enhancing the quality of life for the person with dementia. However during piloting, opportunities may arise to also link to the other categories.

Assistive technology

The term 'assistive technology' refers to 'any device or system that allows an individual to perform a task that they would otherwise be unable to do, or increases the ease and safety with which the task can be performed' (Royal Commission on Long Term Care, 1999). This includes equipment and devices to help people who have problems with:

• speaking, hearing, eyesight, moving around, getting out and about • memory, cognition (thought processes and understanding) • Daily living activities, such as dressing and preparing meals & socialising.

Assistive technology ranges from very simple tools, such as calendar clocks and touch lamps, to high-tech solutions such as satellite navigation systems to help find someone who has gone missing.

Dementia training in the UK In the last two years, dementia support and training in the UK has come to be a salient issue in the political arena. Dementia – a state of the nation report on dementia care and support in England (November, 2013), proposed that all health and social care staff involved in the care of people who may have dementia should have the necessary skills to provide the best quality of care. This should be achieved through effective training and continuous professional and vocational development in dementia.

In England, Health Education England (HEE) is the organisation responsible for overseeing education and training within the health and care system. It wants all NHS staff to be aware of the signs of dementia, ensuring that across the workforce people know how to point patients and their carers to the necessary expert services and support available. It also would like to see more social care staff trained in high quality dementia care, personalised to meet the needs of people with dementia and their carers.

Dementia training available to carers in the UK is becoming more prominent in light of recent government reports and the action of organisations such as the Alzheimer’s society. There are now nationally recognised vocational qualifications, alongside a plethora of short courses related to memory loss and dementia which are now being offered by public and private training providers. Table 1, represents a portrait of some of the training that is on offer for the UK.


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Table 1

Training Course and Programmes Organisation

Description Cost / timescale

Link, Online, on Cd/stick, Geographical spread/ how extensively

used Skills for Care (NVQ)

Specific dementia qualifications are available through NVQ competency based courses: Award & Certificate in Dementia Care at levels 2 & 3. In addition specific units dedicated to dementia training are available through pathways within the NVQ level 2 and 3 diplomas in health and social care. These qualifications support trainees to meet Care Quality Commission standards specifically related to dementia care.

6 months per level depending on training provider.

http://www.skillsforcare.org.uk/Standards/

National qualification for the UK

Alzheimer's Society

In-house training sessions on a variety of topics for staff groups working with people with dementia in all roles and at all levels i.e. Step Inside, Meaningful Occupation and Responsive Behaviours. Workshops are delivered in-house, direct to groups of up to 20 staff at one time, providing whole teams with common skills and knowledge in dementia and better equipping them to transfer learning into the workplace.

Alzheimer's Society Foundation Certificate in Dementia Awareness: a multiple choice test designed to be undertaken by staff that have completed any dementia awareness level training programme.

Dementia training for hospital staff. Training is tailored to meet the specific needs of each NHS trust. Examples of training delivered include a one day awareness workshop designed for all staff who come into contact with patients with dementia, including healthcare assistants, porters, housekeepers and receptionists. This workshop will provide staff with the knowledge and confidence to respond appropriately to the needs of patients with dementia.

A series of 1 day training courses Cost not known £25 Timescale: Not Known

http://www.alzheimers.org.uk

Available Nationally UK NHS


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For qualified staff, practice development leads, nursing staff and allied professionals a more comprehensive programme is offered over two workshop days, with project work and a follow up presentation session. This programme asks participants to identify an area of improvement within their own work setting, challenging them to implement a change and report back to the group after a 12 week study period.

Another programme available is: meeting the complex needs of people with dementia. This contains training modules for professionals caring with dementia in hospitals. The modules cover topics such as behavior, communication and end of life care.

Dementia Friendly Communities programme focuses on improving inclusion and quality of life for people with dementia. A key element of this is working to ensure that all those who come into contact with people with dementia in the community have an understanding of the condition.

2 days + 12 week study period Cost not known Not known Bespoke projects

Work with a variety of organisations on a national and local basis including retail, professional services and the public sector.

Alzheimer's Society and Royal Society for Public Health

The Level 2 Award in understanding Dementia - developed to raise standards in dementia care using a person centred approach to put compassionate care at the heart of the training.

Not known

http://www.alzheimers.org.uk

Available Nationally

The Dementia Training Centre

The Dementia Training Centre provides training about

dementia, care and aspects of old age mental health for:

• Health and social care professionals • Care home managers and their care staff • Voluntary sector organisations

The qualifications that are available are through e-learning and face-to-face sessions. They also offer an MSC in

e-learning 4-hours duration free of charge Face-to-face is offered under a bespoke basis for each organisation.

http://dementiatrainingcentre.co.uk/

Nationally available (based in London) The course is suitable for a wide range of health and social care


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advanced care in Dementia.

The MSc Advanced Care in Dementia

1 year full time or 2 years part time

professionals – offered nationally

Alive!

Run training courses throughout the year. Suitable for:

• Activity co-ordinators and care staff at homes and day centres

• Activity presenters working mainly with older people • Carers/family members needing guidance on

providing activities for loved ones • Anyone wanting to learn more about the role of

activity in supporting older people.

Living Well with Dementia

Activity and reminiscence training courses levels 1 and 2

iPads and Older People

Dance Alive!

£30 per place 4 hours £65 per place 1 day £65 per place 1 day £65 per person per day 2 days

http://www.aliveactivities.org/services.asp

Somerset, South Gloucestershire, Dorset, Hampshire, West Sussex and Wiltshire.

e-LfH (e-learning for healthcare)

Offers dementia e-learning sessions have been designed to familiarise health and social care staff with recognising, understanding, assessing and managing dementia, and with providing high-quality dementia care.

Free of charge Timescale unknown.

http://www.e-lfh.org.uk/programmes/dementia/

Nationally for NHS healthcare staff.

Dementia Friends Become a dementia friend. Face-to-face session or watching on-line resource. Become a dementia champion. Face-to-face session.

Free of charge: 1-2 hours Free of charge: 1 day

https://www.dementiafriends.org.uk/Home/About

Nationally available (through regional areas).

Alzheimer Scotland Offers a range of accredited, modular and bespoke training courses for dementia practice and development.

Cost, time and training is

http://www.alzscot.org/training

Scotland


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Training sessions in the work place Basic dementia awareness Stress and distress behaviours - dementia

bespoke to organisation being trained.

_and_conferences/

City & Guilds Dementia Care (3565) Level 2 & 3 Not known http://www.cityandguilds.com/qualifications-and-apprenticeships/health-and-social-care/mental-health/3565-dementia-care#tab=information&acc=level3

National

Open University Dementia Care Module K235 Level 2 Time scale not known Cost £1316

http://www.open.ac.uk/courses/modules/k235

International

Care UK (Care homes) Provides dementia training for all the people who work in our care homes and day centres so that they have an understanding of what it might be live to live with dementia, including the physical, visual and hearing challenges that the disease poses. Offers specialist dementia training includes a day of intensive empathy training, a day of training around communication and life history training, plus MCA DOLS which provides care staff with knowledge of the Mental Capacity Act.

Training is bespoke to the organisation. Cost not known.

http://www.careuk.com/care-homes/dementia-care/our-people-and-training

National

Dementia Trainers Specialise in providing training in a wide range of topics relating to person-centred dementia care and leadership. Courses tend to be according to the specifications of the organisation seeking training.

Bespoke training to the organisation A series of 1-3 day courses.

http://www.dementiatrainers.co.uk/index.htm

National

Age UK Offers various courses linked to dementia: Dementia care awareness This course offers an introduction to caring for clients with dementia. Dementia care This course gives a more in-depth understanding of how to manage the consequences of dementia

3 hours 6 hours

http://www.ageuk.org.uk/herefordshireandworcestershire/training/full-list-of-courses/dementia-care-advanced--ocn-accredited/

Offered in the midlands region of UK.


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Dementia care advanced This course for managers, team leaders, carers and volunteers who are looking after people experiencing dementia and wish to extend their knowledge and implement change in current dementia care practices.

12 hours Cost not known

SCIE (Social Care Institute for Excellence)

Offers the Open Dementia e-learning Programme which is aimed at anyone who comes into contact with someone with dementia and provides a general introduction to the disease and the experience of living with it. The following modules are offered:

• What it is dementia and what it isn't • Living with dementia • What causes dementia • Diagnosis and who can help • Common difficulties and how to help • The emotional impact of dementia • Positive communication

Cost not known

http://www.scie.org.uk/publications/elearning/dementia/

Offered Nationally

Tutor Care Offers a face-to-face, dementia awareness course aimed at all staff working in the care environment who work with people with dementia.

3 hours Cost - not known.

http://www.tutorcare.co.uk/care-training-courses/dementia-awareness-courses?gclid=CNnDzr_DkcQCFUvLtAodlEsAaw

Training centres across the UK


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Types of digital (computer based) interventions In the last two years, dementia support and training in the UK has come to be a salient issue in the political arena. Dementia – a state of the nation report on dementia care and support in England (November, 2013), proposed that all health and social care staff involved in the care of people who may have dementia should have the necessary skills to provide the best quality of care. This includes effective use of digital technology that is now cheaply and often freely available.

Dementia training available to carers in the UK is becoming more prominent and digital skills and techniques are playing a more vital part in this field.

Table 2 below, represents a selection of digital interventions which UK partners are familiar with, or have come across during the research. A number may be complementary to what Digital Timelines aims to achieve. In any event we will ensure that we fully acknowledge what has been developed up to this point, and at all times use it to inform our own decision making.

Table 3 has the same format, but focuses on non–digital interventions. Again a number may be complementary to what Digital Timelines aims to achieve. With both sets of tables, and other (currently unlisted, or unknown) interventions which will come to our attention over the lifetime of the Digital Timelines project, we will thoroughly try out and establish wherever possible complementarity of these other developments.


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Table 2

Digital intervention & author / organisation

Description

Cost /

timescale

Link, Online, on Cd/stick,

Geographical spread/ how extensively

used Keynote App Memory Apps For Dementia

Create amazing life stories and histories using this handy presentation app. You can add text and photos easily and even email the finished album to friends and relatives

£6.99 App Store for iPad www.memoryappsfordementia.org.uk/app/keynote/

Worldwide

Professor Dominic Upton Dr Penney Upton Dr Tim Jones Dr Karan Jutlla Professor Dawn Brooker University of Worcester

Downloadable Report about use of iPads in a residential setting for memory loss and reminiscence

Free http://memoryappsfordementia.org.uk/wp-content/uploads/University-of-Worcester-iPad-report-2011.pdf

Worldwide

Digital Life Story My Life Software™

Designed by carers for carers, the product emanates from meticulous research and field testing involving frontline care workers, patients and family members – helping you to provide person-centred care at a fingers touch. It includes a variety of therapeutic tools for reminiscence and digital life story books to aid in memory-related activities, with the additional value of gaining mood and wellbeing outcomes automatically as the system is being used.

Not Specified

https://vimeo.com/50208491 http://mylifesoftware.com/digital-life-story

Worldwide

The Memory Box Network Our Big Box

The Memory Box Network is creating a free to use social media based platform that enables people to easily upload and share memorable materials that are tailored for the person with dementia and help them remember past times which can stimulate their more recent memories and their cognitive abilities.

Free http://memoryboxnetwork.org/

UK & Worldwide

Virtual Care Home DSDC - University of Stirling

The Virtual Care Home is an online resource that demonstrates dementia-friendly design in care home settings or people’s own homes. Understanding age-related changes and impairments is the first step towards creating living environments which support the needs of older people. The layouts of seven individual rooms are modelled with information revealed interactively on how the features can make

Free http://dementia.stir.ac.uk/design/virtual-environments/virtual-care-home

Worldwide


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a difference for people with dementia. Tangible Memories Community in Care Dr. Helen Manchester Dr Kirsten Cater Professor Tim Cole Dr. Peter Bennett and Dr Seana Kozar Stand + Stare and Heidi Hinder St. Monica Trust, Stokeleigh Lodge, Blaise Weston Court Alive!

A team from the University of Bristol are working on an exciting new project known as Tangible Memories: Community in Care. The goal of Tangible Memories is to help improve the quality of life for care home residents by building a sense of shared experience through exploration of individual life stories.

Not Specified

http://www.aliveactivities.org/ourprojects-tangiblememories.asp

Bristol, UK

Virtual Wishes Alive!

In a one-to-one session, an Alive! Presenter uses an iPad with the resident to help them engage in activities which they most enjoy. They use a series of easy-to-use apps to allow the participant to express themselves creatively with minimal physical effort. They can also use the iPad to access film clips, pictures and music from the internet which they most identify with.

Free http://www.aliveactivities.org/ourprojects-virtualwishes.asp

UK

Out of the Frame

Bringing art into care homes Alive! & The Wallace Collection

To reach older people in care home settings outside London, enabling access to the Wallace Collection. The creation of six themed ‘loan boxes ‘to be lent to care homes and day centres as an innovative way to facilitate an experience of the museum. To provide care staff and volunteers with training on delivering art and heritage sessions using the loan boxes. To enable care homes to deliver their own sessions to stimulate learning, discussions and reminiscence with residents. The learners are given an opportunity to visit a museum.

Free http://aliveactivities.org/ourprojects-thewallacecollection.asp

iReminisce - Portable Dementia or Alzheimers software application @cognitionsys

iReminisce is a platform that uses life story and reminiscence to enable those living with older age or dementia to be understood as individuals by the professionals that care for them and the families that support them, whilst meaningfully supporting and engaging the individual. iReminisce enables the individual to be supported through their care journey more effectively allowing

£12 per year

http://cognitionsys.com/ipad-reminiscence-therapy http://ireminisce.co.uk/ App for iPad


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them to stay within their community and support network for longer. Supporting: The individual Primary carers Families Care professionals

Alzheimer’s Apps

Alzheimer’s Apps is for iPhone, iPod touch or iPad and identifies other apps that could help to improve the quality of life for the person with dementia. This includes apps that could calm or engage the person. The goal is to improve the interaction with the carer and any other family visitors. This programme only identifies apps that have a significant chance of success and a peer review system is available within the app that allows for feedback to be shared with others about the experiences with certain apps.

Not Specified

http://itunes.apple.com/us/app/alzheimers-apps/id351904904?mt=8

Worldwide

Apps Showroom

Digital Life History App

The Digital Life History app is a new app developed to support reminiscence, creative thinking and reflective learning within the person-centred care approach. Currently, carers in residential homes use life storybooks to develop an understanding of each resident’s needs based on understanding their past. These storybooks are often physical scrapbooks containing important information about a resident’s life such as their marriage, family and vocation, as well as about their day-to-day care needs and life preferences. They are normally developed through collaborations with the resident, their family carers and wider family to record aspects of their past and present lives. They typically contain stories about a resident’s life, activities that the resident enjoys, and daily preferences. Carers often use such storybooks to learn about residents with early stage dementia to maintain the resident’s personal identity, identify personal strengths, reveal coping strategies, maintain conversational skills, process past conflicts and issues, explore change and loss, influence future care, and express personal feelings. However, most storybooks are physical, and hence static artefacts that do not utilize capabilities that digital technology can offer

Not Specified

http://mirror-project.eu/mirrorsolutions/mirror-apps-status/239-digital-life-history-app

Alzheimer's Daily Companion

This app, a resource brought to you by Home Instead Senior Care®, helps build caregivers confidence to provide care by

Not Specified

Android App

UK, Worldwide


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Home Instead Senior Care

arming them with immediate tips and practical advice for all of the behaviours and situations they face on a daily basis. The app includes over 500 searchable tips and practical solutions sourced from the Home Instead Senior Care network and the Alzheimer’s and other dementias caregiving community. The foundation of the content is a new book published by Home Instead Senior Care called “Confidence to Care.” The app is a companion piece to the book in order to give caregivers, in need and on-the-go, immediate and easy to access advice for any situation

https://play.google.com/store/apps/details?id=com.homeinstead.alzheimersassistantandroid&hl=en

CIRCA Computer Interactive Reminiscence and Conversation Aid University of Dundee

Most reminiscence sessions occur between several individuals using physical aids such as photos etc. but there are opportunities to develop more advanced reminiscence aids with multimedia platforms. One such project, CIRCA, was developed by the universities of Dundee and St Andrews. CIRCA explored the possibilities for an interactive reminiscence and conversation aid to help communication for elderly people with dementia. This project ran from 2001-2004.

Free http://news.bbc.co.uk/1/hi/technology/4091516.stm http://www.dundee.ac.uk/djcad/research/researchprojectscentresandgroups/circa/ http://www.circaconnect.co.uk/

UK

CIRCA Computer Interactive Reminiscence and Conversation Aid University of Dundee

The LIM (Living in the Moment) games were developed to allow people with dementia to again enjoy entertaining and stimulating activities. All the LIM Games were created with the idea that they would not need working memory (short-term memory) to operate and enjoy them. The games are accessed with a touchscreen and present the user with engaging 3D environments to interact with just by touching the screen. Frequent prompts guide the user to interact with each game.

Not Specified

http://www.circaconnect.co.uk/limgames.html

UK

‘The Memory Bank’ The Memory Bank’, is an innovative DVD resource pack for use with memory work and reminiscence therapy, designed to be enjoyed by older people, those with mild to moderate dementia and by the people who care for them. Outstanding Dementia Care Product at the National Dementia Care Awards 2013

DVDs are £29.99 each.

http://www.memory-bank.org

UK


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Types of non - digital interventions As technology becomes cheaper and more accessible for carers, families and organisations delivering social care there will be a transition stage adopting these resources and approaches. However there are many low tech, interactive and effective resources that produce amazing results and effects. Table 3 highlights some of these that can be used as-is or the concepts potentially be transferred to digital media. Table 3

Non-digital intervention &

author / organisation Description Cost /

timescale Link, Online, on Cd/stick, Geographical

spread/ how extensively

used Alive & Grateful The Grateful Society is funding Alive! to provide our Guided

Reminiscence sessions for older people in several care homes and day centres in Bristol, using the internet to evoke personal and collective memories.

Free http://aliveactivities.org/ourprojects-alivegrateful.asp

Bristol, UK

Alive! Series of valuable interventions, trainings and staff for older people

Alive uses digital technology and non-digital to help older people in residential care to re-live a wealth of experiences and achievements and reinvigorate past interests. The very old, people with dementia, those with physical and/or learning disabilities and people with degenerative illnesses such as Parkinson’s or Motor Neurone disease often respond well to reminiscence activities. Identifying shared experiences and interests creates a focus for conversation, helping introverted, isolated people to join in and connect with both care home staff and other residents.

Free http://www.aliveactivities.org/workshops.asp [email protected]

UK

Nestlé Reminiscence Pack

The Nestlé UK & Ireland archive has been inundated with requests from carers and reminiscence groups who want historical packaging to help prompt happy memories among patients diagnosed with dementia, or memory problems.

Free http://www.nestle.co.uk/aboutus/history/reminiscence-pack

UK, Ireland

Life Story Network We are here to help deliver and promote improvements to the quality of care and support received by those who may be marginalised through ill-health, or social circumstance, by working closely with care providers, carers, housing associations, schools and advocacy groups.

Not Specified

http://www.lifestorynetwork.org.uk/

UK


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What we do isn’t Reminiscence, it also isn’t Memory Box, but it is Life Story Work and it is so, so much more. It is about restoring and recognising the very things which make a real difference to us all as unique individuals, relationships.

Decades Reminiscence Cards

Activitiestoshare

An innovative set of double-sided laminated cards with stunning illustrations covering life in Britain from the 1940’s to the 1960’s. The clear, vivid illustrations have been chosen to reflect life from these memorable periods in a positive way and are designed with people with dementia in mind. Reminiscence Cards are an excellent way to facilitate group discussion and to encourage the sharing of memories. Illustrations include: Clark Gable and Vivien Leigh, Judy Garland in the Wizard of Oz, an RAF Spitfire, a Dig for Victory poster, evacuee children, Land Girls, Harold Macmillan, a Morris Minor car, first man on the moon, The Beatles and many more. Pack also includes a carers/relatives information sheet about each image.

£10.95 www.activitiestoshare.co.uk UK

Toss and Talk Balls Activitiestoshare

Our Toss and Talk Balls are one of our most popular activities for people with dementia and are an ideal combination of exercise and communication. Suitable for a wide range of people, including those with Alzheimer's and adults with learning or physical disabilities. Select a Toss and Talk Ball that best fits your group - Getting to Know You, Confidence Building, Name a Song, Family History or About Allsorts. Toss and Talk balls create a unique activity suitable for people in care homes, day centres and hospitals. These balls help maintain hand-eye coordination and can be used either as a standing or as a chair-based exercise. Includes activity ideas for people with dementia.

£14.95 http://www.activitiestoshare.co.uk/p/36/toss-and-talk-balls

UK

Toss and Talk Family History Ball

"Describe a typical family meal?", "Who were your friends?", "Where were you born?" A great way to exercise and socialise!

£14.95 http://www.activitiestoshare.co.uk/p/36/toss-and-talk-balls

UK

Life Story Books My Life Story Book for elderly people with dementia is easy to compile, with space for photographs and personal memories - tips for use included. Information can be gathered slowly over a period of time and noted down in the life history book. Photos or pictures can be added where appropriate.

£4.50 http://www.activitiestoshare.co.uk/p/125/life-story-books

UK


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• Helps to engage family, friends, activity coordinators and carers with the person and their life, both past and present. • Serves as a valuable contribution to care planning by focusing on the individual's needs, preferences, history and life style. • An ideal way for carers, managers, support staff and volunteers to make a genuine connection with their residents. • Provides people with dementia an improved sense of identity and self-worth. • Book headings provide a guide for conversation prompts and include: My Precious Memories, My Hobbies and Interests, Favourite Pastimes, Special People, Faith, Significant Dates and many more.

1960's Target Floor Mat The swinging 60's is fast becoming a favourite era to reminisce about and even better when older people can enjoy a little exercise at the same time! This new 1960's Floor Target Mat is ideal for a group activity for older people in care homes and day centres. Players take it in turns to throw their bean bags onto the mat, then answer the matching questions; topics can then be thrown open to the group for general discussion and conversation.

£29.95

http://www.activitiestoshare.co.uk/p/408/1960s-target-floor-mat

UK

Football Memories Alzheimer Scotland and the Scottish Football Museum

The project was launched two years ago and trains volunteers to spend time with people with dementia who have an interest in football, talking about teams and matches from the past and working with images and memorabilia to stimulate memories. The project is a partnership between Alzheimer Scotland and the Scottish Football Museum, and is supported by the players of the People's Postcode Lottery and BUPA Care Homes.

Not Specified

http://www.footballmemories.org.uk/content/the_project/ http://news.bbc.co.uk/1/hi/scotland/glasgow_and_west/8572600.stm

Scotland, UK


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Primary research Methodology – The survey form was developed in consultation with all Digital Timelines partners. The purpose of the survey was to gather information from carers whether they be professional, family or volunteer to establish what things they had tried and found to be most effective, (in terms of promoting positive reactions of people with memory loss), what digital interventions they had used or were aware of, and what level of technologies they had access to, and were familiar with. Findings The UK report combines the research conducted independently by Lancaster & Morecambe College and DHE Solutions. In total 116 forms were completed (54 from L&M College and 62 from DHE Solutions) The findings are as follows:

Q1. What is your relationship with the person you give support to? Professional carer 85 73% Relative (Spouse) 10 9% Relative (Child of) 12 10% Relative (other) please state below 3 3% friend 3 3% Other (included trainee and son-in-law) 3 3%

Total 116

Nearly three quarters of those surveyed were professional carers working in 24 hour or day care provision. A further 19 % were direct family members, either spouses or children.

Professionalcarer

Rela.ve(Spouse)

Rela.ve(Childof)

Rela.ve(other)pleasestatebelow

friend


22

Q2. What is the situation of the person you give support to? 24 hour residential care 51 45% Part time residential care (or day care) 32 28% Full time care at home 12 11% Part time care at home 17 15% Mainly independent 2 2% Total 114

Just under half of those cared for were in full time residential care, while a further quarter were in partial residential care. The final quarter were made of people at home, either with full time, or part time care, or mainly independent. Q3. What activities do you currently do to try to stimulate conversation or other interactions? Chat and hope he/she will pick up something 98 84% Look through family or friend reminiscence photographs 99 85% Look through other photographs 68 59% Tactile objects and scents 45 40% Trigger memories of past times (e.g. school, youth, military service, work, travels) by photos, chat or other? 101 87%

Watch TV or films 80 69% Play music 80 69% Sing songs 70 60% Show family or friend reminiscence videos 20 17% Use digital information on a computer, tablet, iPod or mobile phone. If so, please list in the details box 22 19%

Other - please list in details box 28 24% The vast majority of respondents chose a combination of suggested interventions, the most popular, and virtually used by all carers were: • Trigger memories of past times (e.g. school, youth, military service, work, travels) by

photos, chat or other? (87%) • Look through family or friend reminiscence photographs (85%) • Chat and hope he/she will pick up something (84%)

Q2Whatisthesitua.onofthepersonyougivesupportto?

24hourresiden.alcare

Par.alresiden.alcare(ordaycare)

Full.mecareathome

Par.alcareathome

mainlyindependent


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‘Other activities included: online shopping on iPad, old Pictures on the web, photo albums Google earth, iPod, days out, board games, circle dancing, arts & crafts, garden, dominoes Jigsaws, pamper sessions, good old days, old photos of Lancaster, exercise, walks, movement & dance, visiting old workplace, drawing, baking Animal Activities, themed afternoons, Bingo and cards Q4. Which method[s] do you find most effective in stimulating a positive interaction? Chat and hope he/she will pick up something 94 41% Look through family or friend reminiscence photographs 150 65% Look through other photographs 68 29% Tactile objects and scents 44 19% Trigger memories of past times (e.g. school, youth, military service, work, travels) by photos, chat or other? 150 65%

Watch TV or films 52 22% Play music 82 35% Sing songs 97 42% Show family or friend reminiscence videos 22 9% Use digital information on a computer, tablet, iPod or mobile phone. If so, please list in the details box 17 8%

Other - please list in details box 31 13%

66% of respondents thought that: • Look through family or friend reminiscence photographs and • Trigger memories of past times (e.g. school, youth, military service, work, travels) by

photos, chat or other to be the most effective methods used.

0% 10% 20% 30% 40% 50% 60% 70%

Chatandhopehe/shewillpickupsomething

Lookthroughfamilyorfriendreminiscence

Lookthroughotherphotographs

Tac.leobjectsandscents

Triggermemoriesofpast.mes(e.g.school,youth,

WatchTVorfilms

Playmusic

Singsongs

Showfamilyorfriendreminiscencevideos

Usedigitalinforma.ononacomputer,tablet,

Other-pleaselistindetailsbox


24

Q5&6. Are you aware of any other types of resources to support you in stimulating memories / conversation that you do not use? Other types of resources included: The internet, memory books, memory box aids, online photos, crossword games, family videos, use iPad & phone, memory bank DVDs, Age UK groups & activities, Digital photo frame, DVD Player, Movie MAKER, Smart Phone apps/camera, video cameras. Q7. Do you have access to a computer? No 7% Yes - A desktop 32% Yes - A laptop 66% Yes - A tablet (e.g. an iPad) 51%

50% of respondents who had a computer, had two or more types Q8. What level of competence would you say you were? Beginner 16% Average 60% Advanced user 25%

60% described themselves as ‘average level of competence, a quarter as advanced and 16% as beginner. Q9. Have you ever used video making software (e.g. Windows Movie Maker?) Yes 33 29% No 80 71%

Q10. - do you have a mobile phone? No 4 4% Yes 58 51% Yes - a smartphone 67 59%

Beginner

Average

Advanceduser


25

Q11. Are there any comments or suggestions you would like to make in relation to the survey or Digital Timelines? • Good idea / good project • can just get by on a computer • Techno-phobic not computer literate at all • mum is registered blind partially sighted • could help write easy to remember tasks - i.e. personal care • Virtual tour of local places, interesting • slideshow of themselves and relatives • not particularly useful for end stage dementia • looped images for FT residents to remember

Summary In the UK today, there are many projects, organisations and individuals who are working on developing digital and non digital interventions to help ease stress and promote positive interactions amongst people with memory loss. In relation to the bigger picture of dementia, the UK government’s current focus is on improving detection rates, and ensuring once diagnosed, people with dementia or memory loss receive the best care available. In relation to the sorts of support Digital Timelines aspires to create, government actively encourage creative initiatives using digital technology. Table 1 gives some indication of the commitment to training care staff within the UK has developed, and how, over the past ten years this has become a major health initiative. While tables 2 and 3 give the reader a sample of what is out there in terms of digital and non-digital support particularly focused on reminiscence therapy. It is important to acknowledge the wealth of knowledge and research already conducted in this area, and the efforts which have gone into interventions already being tried and tested. The primary survey conducted by the two UK partners indicates clearly that professional or personal carers rely to a huge extent on tried and tested traditional methods of reminiscence therapy. The vast majority of respondents, whist trying a number of interventions found that looking through family or friend reminiscence photographs, or photos that trigger memories of past times (e.g. school, youth, military service, work, travels) combined with open chat where the carer hopes the person with memory loss will pick up something, are not only the widest tried, but also those to be the most effective. Technology appears to lag in day care and residential care homes, in comparison to what most people these days have at home. Currently wifi is still the exception in a care home in the UK, and that in itself provides a challenge to many of the digital interventions being developed. Digital timelines will gain a lot of useful knowledge from the information this report has already provided, and will continue to provide as we continue to explore what others are doing in the same field.


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Appendix 1 References and acknowledgements List of organisations, individuals and documents referenced in this report Dementia friendly technology - A charter that helps every person with dementia benefit from technology that meets their needs. Alzheimer’s Society June 2014 The European Reminiscence Network http://www.europeanreminiscencenetwork.org/ - a research organisation in existence for more than 20 years with extensive experience of developing and piloting many types of intervention to help people with memory loss and dementia. Discussions with Pam Schweitzer – Director. Alzheimers Society http://www.alzheimers.org.uk/ UK’s leading support and research charity for people with dementia, their families and carers. National membership organisation of 20,000 workers, professional and volunteers. ‘The Dementia UK’ report (Alzheimer’s Society, 2007) ‘Living Well With Dementia’. UK government strategy from the department for Health (February 2009) The ‘dementia challenge’ was launched in March 2012 by the UK Prime Minister designed to make a real difference to the lives of people with dementia and their families and carers, building on progress made through the ‘Living Well With Dementia’. National strategy. The following sources provided survey responses:

• Age UK • Help Direct (Lancaster) • Vale View Day Care Centre (Lancaster) • De Vitre House Day care centre (Lancaster) • Woodhill House Residential care centre (Morecambe) • Online respondents (11 in total) national through email and twitter campaigns) • L&M college sources

DHE Solutions Ltd & Lancaster & Morecambe College March 2015.

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