Think Dementia! Final event of Interreg IVB project Innovate Dementia NatLab Eindhoven, 3 June 2015
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Final event of the Interreg IVB project Innovate Dementia.
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Think Dementia!
Ruut Louwers The disadvantages of age are a large socio-economic threat in North West Europe and a top priority issue at European level. The number of persons living with dementia is increasing the demand for health care while the number of professional health care providers is not able to keep pace. The Innovate Dementia project, focused on promoting innovative care for persons living with dementia, and at the same time on designing and developing solutions ready for the market. It was therefore well aligned with the priorities of the Interreg IVB NWE programme. The project has managed to boost innovation and employment by strengthening cooperation at a European level. A broad range of innovative and sustainable products and services have been developed and tested in the Living Labs of the project together with end-users. Transnational cooperation was at the core of these developments and allowed the partners to work together on these products and services. The Innovate Dementia project also took part in the ‘e-Ucare’ Health Cluster Europe, an initiative joined by 14 projects from 8 different Interreg Programmes. This gave the opportunity to further explore cooperation initiatives, innovative solutions and models for the changing healthcare sector in Europe. By supporting projects like Innovate Dementia, we stimulate the development of transferable working models and the acceleration of innovation through the sharing of both knowledge and development costs. The collective benefits of such collaborations are invaluable; participating organisations acquire new skills, initiate effective working methods and increase their connections to the European market. This in turn helps to develop their businesses and contributes to tackling the societal challenges we face today. I hope this day has inspired you to take up the challenges with the developed knowledge and experiences and to look beyond the borders. After all, the difference can only be made together! Yours sincerely, Ruut Louwers Programme Director Interreg North-West Europe
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Interreg IVB NWE is a financial instrument of the European Union’s Cohesion Policy. It funds projects which support transnational cooperation. The aim is to find innovative ways to make the most of territorial assets and tackle shared problems of Member States, regions and other authorities.
Think Dementia!
Tommy Dunne about living with dementia “I felt empowered when I finally found the strength and confidence to talk about dementia in public.” “Innovation shows us that we can still make a difference. That we can help to change the present and the future for people with dementia.”
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“Peek into my world: the world of a person suffering from dementia�
Think Dementia!
Judith Wilmer on the future of dementia Judith Wilmer has worked as a geriatrician at Catharina Hospital in Eindhoven since 2003. Her speech focused on the future of dementia in terms of prevention and participation. According to Wilmer, when dealing with dementia, we should focus our health care efforts on quality of life. A dementia-friendly society would be a big help. What can we do to prevent dementia? Wilmer explained that you can lower your risk by making changes in your everyday life. Even when people have already been diagnosed with dementia, there is still a lot they can do to slow down the process. Her most important message regarding prevention is to remain active and to challenge yourself. “You need to have a plan and purpose. In that sense I think that raising the retirement age can be very positive.” Wilmer works with a multidisciplinary team providing health care to elderly patients with multiple problems, including dementia. They use a holistic approach for their care embracing a broad range of physical, psychological, functional and social strategies. Wilmer also showed what science tells us. In the US e.g., a lot of research has been done into the correlation between walking and life expectancy. “It’s all about exercise. If you don’t use your muscles, they will disappear. That’s why you have to keep using your body and mind.”
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Wilmer’s presentation was, in a sense, a co-creation, because her patients and their families provided information that helped her and her team to get an understanding of what a dementia-friendly society could look like. “For a lot of people living with dementia, it’s rather hard to participate in society. My patients suggested to come up with solutions for problems that people with dementia face relating to misplaced items such as hearing aids. A solution for this problem can for example be the development of apps that locate lost items. Moreover they wanted me to talk about understanding, compassion and patience. Sharing stories is important. It can happen to any of us.” Most people will not get dementia, not even in very old age. The eldest woman on Earth reached the age of 115 year in good cognitive health. “Exercise prevents diseases. Other things you can do to lower your risk of getting dementia is to keep the intake of alcohol to a minimum, have a stable body weight, be careful with medication, get regular and sufficient sleep and take good care of your teeth.” She concluded her speech with the words of William Buring, who died at the age of 114: “Keep your mind and body moving all the time”.
“Keep your mind and body moving all the time�
Think Dementia!
Paul Chamberlain on collaborative approaches to telecare and health technologies Paul Chamberlain (Sheffield Hallam University) took the audience on a journey that touched on different technologies and collaborative approaches that exist to either help in the treatment of dementia or to improve the quality of life for people who are living with dementia. He discussed a number of challenges that we as a civilisation have to cope with. Two of these are urbanisation and ageing. Both have implications for people who are living with dementia. One of the greatest challenges patients face is that they lose their connection with their immediate surrounding environment and they have problems understanding their environment. Fortunately, digital technologies have been applied in a number of innovative ways to assist people who are living with dementia in their daily lives. Chamberlain noted that dementia receives more recognition nowadays than it did in the past. Many collaborative efforts to treat (or even cure) dementia or to assist those suffering from the disease have been initiated in recent years. One example with promising results that he cited was a co-operative effort involving Philips in Eindhoven and the steel industry in Sheffield.
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Many of these collaborations focus on creating new technologies to help dementia patients in their daily lives. Chamberlain pointed out that greater success is now being achieved in this area because researchers are focusing more on ‘why’ we do things instead of ‘how’ we do them. “This is crucial,” he said, “as it enables us to more fully understand fundamental processes and motivations. Only then we can come up with satisfying and useful solutions.” With these considerations in mind, Living Labs, operating in many locations all across Europe, are actively involving people who are living with dementia in their research. To conclude his presentation, Paul noted that engineers and inventors need to re-think the use of their products. Many products cannot be adapted to cope with the changing needs of individuals in their target audience. Furthermore, some innovations, such as fall protection alarms, may be too conspicuous and off-putting. People would be far more likely to wear these devices if they were more subtly designed.
“Focusing on ‘why’ we do things is crucial in order to fully understand fundamental processes and people’s motives”
“The number of people who will be diagnosed with dementia in the future is bound to increase�
Final event of the Interreg IVB project Innovate Dementia.
Innovate Dementia: results from Living Labs. The first session of the Living Labs track started with a quick overview of the Innovate Dementia project, which has been running since 2011. Jan Steyaert of Expertise Centre Dementia Flanders explained why they started this transnational project and discussed the most important developments to date. “There have been great advances in technology and much change as a result of these developments, with an enormous impact on society,” said Steyaert. “The number of people who will be diagnosed with dementia in the future is bound to increase. Developments in technology, we feel, can play an important and positive role in the lives of people living with the disease.” Ralf Ihl from Alexianer Research Center Krefeld presented facts on dementia across Europe, with a view in particular to the health care systems in different countries. While cultures may be very different from country to country, and the mental health systems are heterogenous, dementia, he concluded, is a homogenous disease, occuring with great frequency all around the globe. Grahame Smith from the Liverpool John Moores University presented the four project themes: intelligent lighting, nutrition & excercise, living environment and models of assistance. The multi-helix approach they used during the project involved the establishment of working partnerships with people living with dementia.
A co-creation process between people with different backgrounds is typical for Innovate Dementia and has been of huge importance for the project. According to Smith, “People are working together to create products and services for people living with dementia.” Because of the co-creation a lot of feedback was gathered already during the project that could be integrated directly. Therefore this method of working has been very effective. The session concluded with a panel discussion bringing together an expert in product development, two companies that made use of the Living Labs and two end-users who participated in these Living Labs. The elderly couple that participated in these Living Labs said they enjoyed their involvement with researchers and developers. Rens Brankaert of Eindhoven University of Technology visited the couple in their home. He talked about the added value of testing products with end-users. “Only then,” said Brankaert, “can we fully understand what works and what does not work.”
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Think Dementia!
Living Labs track: Co-creation sessions The participants of the co-creation session were split up into smaller groups. Each group had to cooperate and co-create, based on different assignments and role-plays. The co-creation session was about creating solutions for specific problems related to dementia, together with people from different disciplines and backgrounds on the spot. The participants could choose which co-creation session to follow, in Dutch or English.
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Different topics where addressed, amongst others: co-creating a specific solution which addresses an everyday challenge of living with dementia and continuing the innovation journey. One of the sessions was about hearing everyone’s thoughts. What are the biggest challenges that people with dementia face?
“Safety”
“The environment housing, not meeting people’s needs”
“Living an independent life”
“Loneliness”
t,
“Knowing when they start to forget things”
“Perception of time”
Final event of the Interreg IVB project Innovate Dementia.
Living Labs track: Tools and assets for a sustainable Living Lab One of the main challenges Living Labs face is that they often lack clear business models and are not sustainable in the long term. The aim of Living Labs is to effectively and efficiently test products and services with end-users in order to ascertain that those products and services meet the needs of the target group. But what tools and assets do Living Labs require to achieve their objectives? Marieke van Beurden, programme manager of the cooperative Slimmer Leven 2020, raised this question during the session. She asked the audience to think about how Living Labs can support their innovation activities. Van Beurden explained that a Living Lab is a real-life test and experimentation environment where users and producers co-create innovations. Birgit Morlion of iMinds added that the purpose of a Living Lab is to activate user involvement to detect unintended or unforeseen problems or opportunities. Morlion explained the structure of the Living Lab of iMinds in order to give the audience inspiration for the group discussions. She introduced questions like: What should a Living Lab offer, and who can take advantage of such a lab?
The objective of the group discussions was to come up with tangible proposals, and in particular to make recommendations regarding concrete assets and tools to ensure the sustainability of Living Labs. Participants identified the most serious problems that they encountered, including products not suitable for end-users, the rapid pace of developments in the industry, and the lack of enthusiastic people to work with. It was the consensus of the group that people with dementia should be involved in the search for solutions so that they can bring their desires regarding required changes to the attention of people working to address their needs. It was also suggested that a wider range of participants should be engaged with Living Labs. Therefore, the participants concluded that concrete assets and tools for a sustainable Living Lab should at least involve i) an enthusiastic and motivated panel of endusers who can easily be asked to contribute to the development of their products and services, and ii) easy access to new collaboration partners active in different parts of the value chain in health.
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Final event of the Interreg IVB project Innovate Dementia.
Thoughts?
PASCAL BROERS & WILFRIED GRADUS
Zorgwonen B.V. “We see a lot of people from different backgrounds today. It is good to have all the complementary services for people living with dementia in one place. Technology goes hand in hand with the physical. Technology has to be in service of humans and has to enhance human interaction.”
BRIGITTE STEPPE-CHEVANCE PVGE “I am a designer and I run a designer café, where we discuss all kinds of topics, including possible cures and technological solutions to make the lives of Alzheimer patients easier and more comfortable. The Letter of Intent that will be signed is very important. I really hope it states that the political climate, of mostly small towns and villages, must become more Alzheimer friendly. This group of people needs all the support they can get, but unfortunately the local policies do not include coping with Alzheimer patients.”
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Final event of the Interreg IVB project Innovate Dementia.
Implementation track: CORAL roadmap CORAL is a wide network, consisting of 26 regions, whose activities focus on creating and implementing innovations and developing solutions and policies that address health and active ageing issues. Shabs Rajasekharan, Director & Co-Founder of Smarter Futures EEIG, presented the CORAL Roadmap. Amongst others, this roadmap and guide provides insight into who is active in the health and innovation arena. Rajasekharan described the investment climate for the development of innovative solutions related to ageing and dementia. He noted a couple of important points: “innovations,” he said, “need to be scalable and they need to have a great impact for them to be profitable. There are,” he added, “many companies and private investors already investing in all kinds of innovations. But for both the investors as well as the companies seeking investment, there is still a lack of transparency on many levels. It is also the case that health care costs continue to rise. In addition, innovation projects always involve risks which the parties involved need to be willing to take.
With that in mind, he addressed the question of useful indicators worth monitoring prior to investing in an innovation. Relevant questions to consider prior to investing include: what type of companies are active? in which markets? and what kind of innovations do they offer? The CORAL Roadmap can be useful in answering these questions because, for all parties, it provides insight into the relative value of health benefit plans.
“Innovations need to be scalable and they need to have a great impact”
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“We want to preserve the dignity of our customers” - TOPSHAKE
“We are not on a mission sell, we are here to connect with people and exchange knowledge and best practices” - CITRUSSUITE
“We have one focus: simplicity” - iMEMORIZER
“People organize themselves to keep an eye on each other” - ONSPLATFORM.TV
“We created a digital museum filled with personal objects that bring back memories”
to
d d
- DAMIBU
“The brain is more like a river than a rock” - EMIND
Final event of the Interreg IVB project Innovate Dementia.
Awareness track: Play ‘Melting Ice’ and movie ‘Still Alice’ The track Awareness focused on promoting awareness, lifting the stigma and violating the taboo around dementia. The track included a play ‘Melting Ice’ and a movie ‘Still Alice’. Both sessions included after talks with experts in the field, in order to give the audience the opportunity to share their thoughts and discuss topics that arose from seeing the play and movie. After attending session(s) of this track, visitors had been introduced with the different perspectives on dementia and could better put themselves in the place of people living with dementia and their informal carers. The play ‘Melting Ice’ symbolised a father who is getting diagnosed with dementia and a son who is trying to cope with his father’s disease. Jan van Els and Piet van Bijnen, who work with dementia patients on a daily basis, performed the hour long tragicomedy.
Howland, happily married and mother of three adult childeren. Alice is a linguistics professor at Harvard diagnosed with early onset familial Alzheimers disease. She realizes that her life will change drastically. Slowly she is losing control over her own life. Still Alice is a 2014 American film, written and directed by Richard Glatzer and Wash Westmoreland and based on Lisa Genovea’s bestselling novel of the same name. Juilanne Moore won an Oscar for her role of Alice Howard in this film. After the movie, information on dementia could be gathered and participants were offered the possiblity to talk to experts in the field.
The movie ‘Still Alice’ is about Alice
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Think Dementia!
Business fair
FRANK VERBEEK Gociety
BAS GOOSSEN MiBida
“Today offered insight in the needs of end users and what they feel is important. This is very precious information in the development of our products. To talk directly to people living with dementia gives us new ideas to include in our products.
“It was really good to see and expand my network and relationships. We’ve talked about what is happening and how we can help each other. I also spoke to a couple of end-users who were interested in our products. They gave us some feedback and together we brainstormed about new possibilities and downsides.”
What makes this event so powerful is that everybody is willing to give honest answers. Patients get a chance to speak up about what they hope the future will bring.”
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Final event of the Interreg IVB project Innovate Dementia.
Interview Paul Chamberlain Sheffield Hallam University and Lab4Living
What is your assessment of today’s event? The positive thing about today is the engagement of all the different users and especially their enthusiastic attitude towards the topics discussed. We have similar events in the UK and now is the perfect time to connect them. We need to act more globally without turning a blind eye to local needs and cultural aspects. And for me personally it is interesting to see how things are dealt with over here, especially because I am an outsider. What should the next step be, based on the Letter of Intent signed today? We need to identify the value of all the individual parties, who signed the Letter of Intent, and see how they interact with each other. We need to look closely at how one component affects another. Every party that has signed the letter must keep its individual effectiveness. What is your next step with respect to today’s subject? We currently have 20 different projects running in our Living Lab and they are all well aligned. They all have their own focus. There is still a lot of work that needs to be done.
In the UK there is a lot of discussion going on about innovations and health care. In order to be innovative, you have to take risks. And that is bit of a paradox, as the health sector is risk averse. That creates an additional challenge to make innovations operable and profitable. Would you like to add anything else to this interview? On a personal note, I have a special message for all the people in our society. We can learn from every individual on this planet. Each one has inherent value. And that also includes elderly people. They are a very valuable asset in our society. Their knowledge and experience is unmatched. They are experts on being old. And a society that is more engaged will inevitably be a better and healthier society. Therefore we need everyone on board.
“We can learn from every individual on this planet. Each one has inherent value.” 37
Think Dementia!
Interview Judith Wilmer Catharina Hospital Eindhoven
During your speech you addressed a dementia-friendly society. Can you describe what that society would look like? Nowadays our society demands a lot from our cognitive skills. For example, to do our banking, we need computer and internet skills. This can be a problem for people with dementia. If you want these people to participate in society, you need to help them. How can society assist? There are already some supermarkets and banks that have taken the initiative to train their employers to recognise people with dementia and to offer them help. A person with dementia often doesn’t know the value of money anymore. Therefore, we need to assist and help them thereby making living with dementia easier. Do you have other examples of initiatives like these? In my speech I mentioned the example of a housing project in which elderly people live together with students. The students pay less rent in return for assisting the elderly residents. They help elderly people with all
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kinds of activities. Why are those initiatives so important? They are important because of the growing number of elderly people in society. When I grow older I would like to live in a society where I can live independently and be accepted even if I have grey hair and a chronic disease. Since the number of elderly people is growing, I think the banks and supermarkets, amongst others, will respond to market forces by creating environments and offering services that are more elderlyfriendly.
“When I grow older I would like to live in a society where I can live independently and be accepted even though I have grey hair and a chronic disease.�
“The best part of cooperating with other regions is that we can share best practices” - JOEP BROUWERS BRAINPORT DEVELOPMENT
“What stood out the most for me is that all stakeholders, from end users to investors, are represented today” - MARCEL DE PENDER BRAINPORT DEVELOPMENT
“Experts keep us focused to push through boundaries” - PETER PORTHEINE SLIMMER LEVEN 2020
“Decisions should be based on relevancy and effectiveness” - JOHANNA PACEVICIUS ASSEMBLY OF EUROPEAN REGIONS
“If we can determine the course of technology, we can achieve great things” - PETER PORTHEINE SLIMMER LEVEN 2020
“A lot of innovations are finally becoming impact-ready” - MARIELLE SWINKELS PROVINCIE NOORD-BRABANT
Think Dementia!
Thoughts?
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MARYLO VERHAGEN Nationaal Ouderenfonds
SANDRA JAGER Metropoolregio Eindhoven
“Today I’ve learned what obstacles organisations face and what we can do to help them. We as an organisation know a lot of elderly and the Living Labs generate a lot of knowledge. If we can combine these two, we can share research and experiences.”
“I spoke to people who produce innovative products, how they market them and how they involve end users. It was really valuable for me, because I can use this for my own professional activities.”
Final event of the Interreg IVB project Innovate Dementia.
TINEKE VAN DE WIELE Takes care of her spouse “We received an invitation to attend today’s event, which we gladly accepted. I really hope more instruments and technologies will be developed and become available to us, people dealing living with dementia. Regarding to the Letter of Intent, I am already pleased with the results of this project. My husband has Alzheimer’s and this project really made our lives easier. Therefore I hope that the intention is to proceed and intensify the research in order to make living with dementia easier.”
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Co l o p ho n This magazine reflects the programme of the final event of the Interreg IVB project Innovate Dementia. The collaborating partners of Innovate Dementia are: Brainport Development N.V. (Lead Partner)
NL
City of Eindhoven
NL
Mental Health Care Eindhoven
NL
Eindhoven University of Technology
NL
Liverpool John Moores University
UK
Mersey Care Trust
UK
Alexianer Research Centre Krefeld
DE
Expertise Centre Dementia Flanders
BE
University College Thomas More
BE
Nursing Home Sint Augustinus Diest
BE
Innovate Dementia was made possible by the Interreg IVB NWE programme (ERDF). Although this brochure was produced with greatest possible care, no rights can be derived from its content. Š Brainport Development, June 2015 info@brainportdevelopment.nl +31(0)40-7512424 Visuele Notulen www.visuelenotulen.nl
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Magazine designer
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Charlotte Porskamp
Magazine designer
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Lisa Vorst
Editor
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Anouk Verbruggen
Copywriter
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Sierk Keuning
Copywriter
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Nina Stegeman
Photographer
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Michèle Giebing
Teamcaptain
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Diederik Vrijhoef