Leyden Academy

Vital elderly people in the third phase of life are often expected to remain socially active and care for the ‘oldest old’. But what if older people live in vulnerable situations, face insecurity, and have no access to resources or social networks? How can policymakers and researchers reach this vulnerable group and involve them in meaningful participation?

Calls from researchers and policymakers to participate in research are often responded to by older people who are better educated and can tap into various resources in their environment. In contrast, research into meaningful participation of older people in vulnerable living situations is scarce. Policymakers and researchers quickly speak of ‘hard to reach groups’. But you may wonder whether it is not the case that one’s own methodology, social position and the institutions of which researchers are a part create a distance and an us-versus-them feeling that hinders contact.

Photographing your neighborhood
To find out what older people in vulnerable situations experience as meaningful participation, a research team from the Social and Cultural Planning Office (SCP) and Leyden Academy on Vitality and Ageing executed a participatory action research in two metropolitan neighborhoods: Amsterdam East and Laak in The Hague. The researchers formed a team in each neighborhood with older co-researchers, who examined their own lives and those of their fellow residents with a view to improving their living situation. In this photo-voice project, people photographed their neighborhood and their own lives under the guidance of artist Janine Schrijver. This provided clear images about the living environment of the participants.

Positive energy
To conclude this project, the older co-researchers discussed their photo stories with policy makers and researchers. It became clear that the participants found the energy to make their voices heard in their joint photo story project. “Sometimes it seems as if the relationship between government and citizens has run out of steam. This project shows that new positive energy can be created,” says Crétien van Campen, researcher at SCP and co-initiator. Co-initiator and director of Leyden Academy prof. dr. Tineke Abma, also emphasized the enthusiasm that this project has generated: “It is incredibly beautiful to see that it not only makes it clear where pain points are, but that this process also leads to connection. For example, an initiative in Amsterdam, which ensures that people who are isolated – especially women with a migration background – actively develop and maintain friendships again.”
Director of the SCP, Karen van Oudenhoven, even spoke about the bridge that this project has created between the language of citizens and the language of policy. “As researchers and policymakers, we are used to coming up with questionnaires and then processing the answers. But there is a large group that does not like it or even distances itself from it. How do you ensure that this group is heard and that their experience and opinions are included in decision-making? This project has proven that this is possible!”

Participatory research
The photos in combination with a short text made it clear what people really encounter and what their wishes and needs are. For example, 63-years-old Lydia, she photographed a drain and a shadow of herself: “This is how I am treated by the government and that is how I often feel. I try to open people’s eyes about the informal care profession with my photos and story. Because that’s what it is, a profession. But without training and without being paid. People think too easily about informal care. It’s swim or drown.”
This innovative way of participatory research also appeals greatly to Wim Burggraaff, government policy advisor: “Instead of saying that they are difficult to reach, we should choose other paths. Normally I have a research report of many pages that I try to capture in one image where we move from ‘saying and thinking’ to ‘feeling and doing’. I therefore invite all researchers to collect many more stories in this way. Only then will we hear the voices of people we normally don’t hear.”

Key factors
The photo-voice project showed several key factors for successfully reaching and involving older people in vulnerable situations:

1. The fact that the researchers knew the neighborhood, culture and language ensured that doors that were closed to anonymous research remained, now opened. Taking time for ‘normal’ conversations was crucial for building trust.
2. By first creating space for conversation and attuning to the living environment of the residents, the elderly felt heard and seen.
3. Empathy and letting go of your own working methods.

Reaching older people in vulnerable situations therefore requires a different approach by policymakers and researchers. Instead of labeling the elderly as ‘difficult to reach’, researchers and policy makers could take a more critical look at their own habits and actions that make contact difficult. For example, by choosing the photo-voice approach, elderly people in vulnerable situations can be given the space to make their voices heard and work together to improve their living conditions. In this way, the gap between institutions and vulnerable elderly people can be bridged.

We are getting older and more diverse, and that brings challenges. We cannot solve these challenges through healthcare alone. We also need municipalities, schools, companies, housing associations and older people themselves to achieve an age-friendly society. This requires cross-domain collaboration. But how can we achieve that?

An investigative look
On April 25, researchers Tineke Abma and Barbara Groot from Leyden Academy on Vitality and Ageing, and Mariëlle Schuurman from Leiden University Medical Centre (all based in the Netherlands) presented the dynamic knowledge synthesis of local networks related elderly care. This synthesis was created in collaboration with stakeholders from 110 local networks and on behalf of ZonMw. The aim was to provide the professionals in the networks with tools to look at their own practice with an investigative view and to further develop the collaboration between care, support and welfare in the neighborhood.

Systematizing lessons learned
Moniek Willemstein, program manager of the ZonMw Local Networks program: “A lot of experience and practical knowledge was gained in the various networks. For example, we looked at how to better organize fall prevention through collaboration between healthcare and welfare or at everything that is needed to properly design a meeting place for older persons in their neighborhood. But little knowledge and experience was exchanged between the networks. We wanted to bundle the various insights, lessons and experiences, and make them available to local networks. We also wanted to gain insight into the approach to the synthesis itself. How do you approach learning across multiple projects? Those involved have exchanged knowledge and experiences about this.”

Process and results
Prof. Dr. Tineke Abma, professor of Elderly Participation and director of Leyden Academy, about the challenges and insights gained: “We were tasked with initiating a dynamic, non-statistic, learning process between the networks. But how do you do that? People learn from and with each other when ‘productive interactions’ arise. In other words, people want to meet others who struggle with the same issues. Different perspectives are crucial, as is safety to share not only success stories, but also doubts, questions and disappointments.”
One of the most important findings is that local collaboration requires investing in relationships, getting to know each other and establishing new connections. This is often accompanied by tensions. Especially when domains that ‘speak different languages’ come together, for example healthcare and welfare. And sometimes even broader with housing associations, social entrepreneurs and municipalities. Results are important, but the process is just as important!

Participation of older participants is crucial
Most networks started from healthcare, for example a general practice or home care institution. But more is needed to improve the quality of life of older people. The eight domains of the WHO’s age-friendly communities model were helpful in this regard. It turned out that elderly people were often not included in the local network. New insights emerged in the networks where older people did actively participate. Professionals realized that not all questions can be solved with care. For example, when experiencing loss and loneliness, older people indicated that attention and a listening ear were in many cases more important than solving (care) questions. A ‘good life’ is not only achieved through good care. Citizen participation, inclusion, good communication and environment are also important.

“The value of collaboration is sometimes difficult to pin down. It has value, that is what many people experience, but what does that mean? Getting to know each other and therefore finding each other more easily, especially when problems arise, is very valuable when working together.” – Barbara Groot, researcher

Positive energy
The enthusiasm to actively participate in the process was unprecedented. The dynamic nature of the knowledge synthesis has released positive energy and set a lot in motion. Working with creative methods in particular made a lot of difference. The ‘Working together as a forest’ card set was designed together with the participants, in which the ecosystem of a forest is used to look at and talk about different aspects of networks. This helps to reflect and to think about the common vision.

Connection with education
During the final meeting with the project leaders, many students and teachers from different levels of education were also present. The participants concluded that it is important that the professionals of the future learn to work with so-called wicked skills; listening, asking open questions, putting yourself in the other person’s shoes, dealing with conflict, etc. These – in addition to substantive professional knowledge – are desperately needed to make sustainable cross-domain collaboration future-proof.

Contact is something special. Really in contact with another person, with yourself, with your work, with your environment… then you know you’re alive. Real contact is also rare, especially in places where work pressure is high and the need for it is so strong. In healthcare, for example.

The importance of contact
Reasons enough for our healthcare aesthetic workshop, led by Tom Maassen, to organise a two-day Arts & Health event around contact. We organised this third year of Arts & Health together with The Care Lab at The University of Manchester, led by James Thompson, author of the book Care Aesthetics (2022). On Thursday 30 and Friday 31 May, about eighty participants looked for ways to strengthen contact in healthcare through dance, song, theatre, meditation, visual arts, rituals, stories, and conversation. Surprise and recognition, pleasure and sadness, at a distance and very close. It became clear how aesthetics and care are connected, and how powerful the connection between care and art can be. Present were healthcare professionals, healthcare managers, elderly people, artists, and researchers. It was precisely this diversity in backgrounds that made this event a great success. A lot of energy and creativity was unleashed during the dozens of sessions. To give you a little insight, we will explain the content and experience of some sessions.

“There is momentum in society to really highlight the aesthetic dimension of care. We can make the attention to this more sustainable through research, education and organizing these types of experience-oriented events. I am convinced that this will lead to better care.” – Tom Maasen, philosopher, and researcher

The miraculous journey of Fi
By Marjolein Baars and Doris Hochscheid
This beautiful performance was a penetrating and at times comic struggle of an elderly woman. Fi’s journey is about being stuck, (informal) care, surrender and acceptance of the situation you are in. It’s a messy search, as life can be, for ways to reinvent yourself. The audience also enjoyed Doris Hochscheid’s striking cello playing, in an ingenious constantly changing decor, with windows that opened and closed, a moving tram, a street, beach, birds. The message was as confrontational as it was hopeful: your grip on circumstances may be very limited, but you can control your attitude towards them.

Rituals for loss
By Ruchama Kramer and Marijn Graven
How do you give shape to farewell and loss? How do you convert fear and uncertainty into hope and desire? How can a farewell also be a new beginning? Ruchama Kramer and Marijn Graven guided the participants in pairs in designing a ritual for each other. A number of these rituals were performed during the session. The combination of ritual and theatre made it a very strong whole. It led to intense experiences and a strong emotional involvement of all participants.

In contact with each other
By Ester van der Geest
Ester van der Geest investigates how touch can be a relevant part of the contact between elderly people and informal caregivers. In this session, the participants learned to come into physical contact with each other, to experience what touch does to you and what it means to someone else. In healthcare we are no longer used to using and discovering this most basic form of contact, touch.

Stories of beautiful care
By James Thompson and Jenny Harris
In the United Kingdom, healthcare is always portrayed negatively, and the focus is mainly on problems such as costs and things that go wrong. But something changed during corona. People looked out for each other. This experience prompted James Thompson to focus on positive healthcare stories. It became clear that beauty is not only in appearance but also has inner characteristics. And that caring is (or can be) something beautiful. James Thompson and Jenny Harris joined the participants in looking for stories about beautiful care. It is precisely in sharing stories about the beauty of care that contact is created.

Exploratorium of the body
By Nieke Koek
In this session Nieke Koek took the participants on a walk outside. With a piece of clay in hand, they walked in pairs in search of how they felt. First in silence and later in conversation. It was not about feelings such as happiness or sadness, lonely or hunted, but about what a feeling looks like, what colour or shape it has. For example, yellow with some green and a bit grainy, or a bowl with a hole in it or with tentacles and deep cracks. While one talked, the other asked questions and in the meantime the clay was kneaded into a shape that expressed this.

Show the wood
By Tom Maassen
Tom Maassen conducted research in the care aesthetic workshop into what woodworking can tell us about care and about entering relationships. A lot of love and care goes into the wood. But what happens there? After a brief introduction, the instruction given to participants was ‘show the wood’. Participants chose lime, olive, walnut, or ebony wood. In the meantime, Tom asked questions and made short interventions. In the attempt to show the wood, you encounter both yourself and the wood in all its special features and idiosyncrasies. The participants were surprised how much they managed to really establish an exchange with the wood.

Voice and body awareness
By Chantal Goosens and Remco Hooijkaas
In this plenary session, Chantal Goosens had the audience sing together and explore in pairs how contact can be made through the voice. You don’t have to be able to sing, everyone can make a sound! Chantal invited everyone not to try to sound nice, not the way you want to sound, but just to sound the way you sound. This also includes taking risks, which is quite scary, according to one participant. It is about giving space to your body and your voice, so that you also create space for the voice of the audience. The session ended with everyone singing the beautiful ‘Dios es Amor’.

“I was very touched by it.” – Anneloes Schuppen, dance teacher
“I have never felt so safe while singing.” – Daphne Raad, researcher

Choreography of contact
By Anneloes van Schuppen
Anneloes van Schuppen knows how to find a very nice balance between ecstatic dance, choreography, and self-exploration in her sessions. In this way, various layers of contact were based on the question ‘What would you like to be in more contact with?’ During the session, participants could reflect on this question with pen and paper. From contact with yourself and with your body, they encountered someone else, with the group and with the space. Discovering new perspectives, inputs and insights about yourself and others, by doing, experiencing, and expressing. The participants worked towards a short, but moving and beautiful choreography.

“Even though it was out of my comfort zone, I experienced it as special and pleasant.” – Participant

Dance coach
By Mariëlle Peerenboom
After a conversation about challenges in making contact, the participants started to move more and more. Under Mariëlle Peerenboom’s inspiring guidance, words and movements merged more and more smoothly, towards an art of making contact.

Generation mixer (Imaginary communities)
By Lieke de Kock and Greet Meesters
Imagine an island that has never been discovered before. What can be found on that island? Who lives there? With playing and writing exercises, set construction, music, and all kinds of different art forms, the island comes to life. Young and old connected in fantasy, that is Generation Mixer. In addition to talent development, the method is about promoting the mental well-being and social skills of the participants. In this session by Lieke and Greet, the participants experienced this unique and very effective working method. First, the participants completed the sentence ‘In my imaginary world there is ……..’ in image and sound. Then everyone got to work on representing their part of the island on paper, ‘decorating’ it and bringing it to life.

Care aesthetics in Manchester
By Kate Maguire-Rosier and Réka Polonyi
Kate and Réka presented the first findings of their research Care as an aesthetic practice, from the University of Manchester and the NHS, on the assessment of dementia patients. Kate and Réka developed a framework for sensory and embodied dementia care. This framework illustrates what a healthcare aesthetic practice in a complex environment might look like. The presentation was interspersed with exercises and discussion and focused mainly on the researchers’ reflections on the process of co-production. Questions were raised such as: How was the collaboration? What tasks were involved? What are the lessons learned?

And more ………….
But there was more. Berit Lewis introduced the participants to her extensive knowledge of the effects of meditation and treated them to a few in-depth exercises. She also did a meta meditation for the entire audience, an exercise to move from compassion for yourself to compassion for the entire universe. Furthermore, the participants were introduced to the crdl of Dennis Schuivens and Jack Chen. This instrument creates musical moments of meaningful contact between people with a physical or cognitive disability and their loved ones. The event ended with a conversation between Tineke Abma, James Thompson, Tom Maassen and the audience. The focus was on questions such as ‘What exactly is healthcare aesthetics?’ and ‘How can we give the special experiences of the past few days a place in healthcare and healthcare education?’