Author: leydenacademy

The first global Citizen Science for Health conference was held from 29 October till 1 November 2023.
Herewith the registration of the keynote “The Participatory Turn in Health Research. Its Roots, Methods, Ethics, Validity and Future” by professor dr. Tineke Abma.
Tineke Abma is Executive-Director of Leyden Academy of Vitality and Ageing and Professor ‘Participation of Older People’ at the department of Public Health & Primary Care at Leiden University Medical Centre. She has been researching themes closely related to patient participation, participatory action research, ethics and diversity in the context of healthcare. Abma: “It means involving people whose lives are at the centre of research in making the key decisions of any research project: what should be the focus of the research, what are the research questions, how to answer these questions, what information to collect, how to make sense of the information, how to share it and what action to take as a result.”
The keynote has been summarized to 20 minutes.

About 24 to 40 million older Europeans have difficulty reading and understanding texts. This often leads to lower digital skills, stress, uncertainty, and health problems. For this reason, we have developed a playful and interactive healthy lifestyle course to support people with low literacy. The toolkit and the accompanying mini-training for professionals and volunteers who want to organize the course is now available.

Learning through play
Growing older with pleasure! is designed as an eight-week course, consisting of weekly two-hour meetings. During these meetings, participants learn in an accessible way, using interactive game cards, about topics that matter to them: the aging body, nutrition, well-being, digital skills and being heard. The course was developed according to the principles of meaningful play and collaborative learning. In the first case, learning skills through play is central, with the aim of gaining knowledge and ideas in a fun and enjoyable way. This approach has a positive effect on memory and recognition, motor skills, self-confidence, and social well-being. Collaborative learning focuses on group-oriented learning, active learning through involvement and strengthening social relationships, in the context of everyday life.

“Low-literate older people have often had to deal with disappointing learning processes. They have lost motivation along the way. It is important to get to what they do find important. There are too few projects that respond to this.’” – Jolanda Lindenberg, researcher Leyden Academy

Positive reactions
The interactive course has already been tested in various European places. A total of 200 participants took part in the pilots, ranging in age from 53 to almost 100 years. Some participants indicated that they felt less pressure and found it easier to share and try things out. The pilot was also a promising experience for the trainers involved. “People quickly come up with solutions by consulting with each other and sharing their experiences.” says Rita Castela of AI9.PT from Portugal.

“You have a lot to deal with as an older person. During the course I learned to tackle issues spiritually, mentally, and physically. I especially loved the game element. There was also a disadvantage: the course is too short.” – Anita, participant

Free teaching materials
Grow older with pleasure! is a collaboration between Leyden Academy, Stichting Lezen en Schrijven, University of Copenhagen, University of Coimbra and AI9.PT, and is supported by Erasmus+ (a European Union program). The free toolkit can be downloaded from the LOLit website. In addition to the course material, you will also find a step-by-step mini training for healthcare professionals who want to apply the course in their organization.

“The special thing about this project is that people get the feeling that they belong, that they feel part of society, that is moving to hear.” – Peter van Deursen, adult education Erasmus+

This is the message that Tineke Abma would like to convey. On Friday, June 23, she delivered her inaugural lecture ‘The Art of Belonging’ following her appointment as  professor of Elderly Participation at the University of Leiden. This is a brief summary of her inaugural speech.

The elderly are a gift to society
Participation, or taking part, is of great importance to elderly people. People such as Afifa Tadmine (73), whose face represents Leyden Academy. With her BLOEM Foundation, Afifa is –and has been for years-very committed to the activation of women who live in social isolation. Or take Leo and Netty Olffers, who have opened their living room to elderly people in the Laak district of The Hague for years. These are no exceptions. Older people are busier than ever:  babysitting their grandchildren, working as volunteers, whilst often still working in paid jobs themselves. Participating is meaningful. It contributes to the well-being of the elderly and is at the same time a great ‘gift’ for society.

The art of belonging: being and desire
According to older people participation is useful if it contributes to belonging. ‘Belonging’ sounds like a combination of two verbs: being and longing, or ‘being’ and ‘desire’. Belonging refers to a deep human desire to belong without having to conform. Being accepted is not self-evident. As soon as people reach retirement age, they are confronted with processes of social exclusion. They do not experience belonging (anymore). This is even more true for older people who have had to deal with exclusion based on class, ethnicity or another sexual identity all their lives. Opportunities for participation are unevenly distributed in our society.

Dominance of economic thinking
Current policy for elderly focuses mainly on healthcare costs for an aging population and the perceived limited economic usefulness of elderly people. The elderly are presented as a cost item and vital elderly people are expected to contribute to the economy and healthcare crisis by providing informal care, on top of all the tasks they already perform. But what do they want? This and other forms and combinations of meaningful participation remain underexposed, such as participating in socio-cultural activities that offer older people opportunities for continued growth and development. The need to learn does not stop after the age of 65. This is precisely what I wish to do with my chair

Art touches and connects beyond words
It is high time to give a new meaning to the concept of participation so that it contributes to meaning and belonging. This can only be done if we are prepared to accept that we humans are always connected with, and therefore dependent on, the world around us. Participating artists and social designers have a lot to offer. They are not so much focused on the defect or clinical picture, but take into consideration the (older) person and their creative potential. It is important for them to initiate a creative process, to express feelings, and they do this with care and concern, with concern for well-being of elderly people. What makes theatre, dance or singing together have so much to offer? In short: Art is not so much about transferring information or meaning, but primarily about sensual and sensory sensation. The experience is intensified and people are temporarily pulled out of their everyday life. Something resonates in people, which is aroused by the movements and the music, and that ‘feeling sound’ creates inspiration. This is why art touches and connects beyond words.

Transdisciplinary research with elderly people
I have always been an advocate for participatory research with people that contributes to their self-insight and mutual understanding. Drawing on different, sometimes conflicting perspectives, we can gain more insight into the experiences of others, and by entering into an equal dialogue we can broaden and enrich our own horizons. Involving patients or clients in research is becoming more and more common, but the participation of elderly people in research is much more limited, especially when it comes to elderly residents in nursing homes or elderly people with cognitive or verbal disabilities. We therefore have little or no knowledge of their perspective, and are thus confronted with our own methodological limitations. We invariably assume that people are autonomous and speaking subjects, and researchers often forget that there are people who cannot express themselves well in speech or whose words are not necessarily related to their emotions or actions. Excluding people from research is in fact silencing them. This is why I plead for transdisciplinary research together with older people and artists as co-researchers, and for the use of arts-based methods.

Moral horizon
Belonging forms the moral horizon for my research into elderly participation. That horizon outlines a movement and direction that my team and I are committed to in our research with, for and by older people. We want to contribute to 1) reducing inequalities of participation for older people and therefore their belonging, and 2) to promoting participation and belonging through a broader view of where participation takes place. Not only in informal care and work, but especially in areas that may have no direct economic benefit, but do generate vitality, meaning and connection, such as active participation in participatory art and culture.

Our research into the value of art
To gain more insight into the value of participatory art with and for the elderly, we conducted research into visual arts in hospitals, participatory theatre, inclusive dance, art for older migrants, clowning for people with dementia and intergenerational art in which children and elderly people work together, creating imaginary communities and visualizing what connects ‘us’ beyond age. We do not hesitate to ask critical-reflexive questions. Because art is no cure for everything and is not the solution or answer for the current healthcare crisis. But I do plead for an optimistic and hopeful vision of the third and fourth phase of life with room for participation in socio-cultural arrangements. The enormous creative potential this releases is enriching both for the elderly and our entire society.

A dance a day keeps the doctor away!

Professor Tineke A. Abma
Professor of Elderly Participation at the University of Leiden
Executive Director of Leyden Academy of Vitality and Ageing

 

On Thursday evening 22 June, the final presentations of the Honours Class Innovating Health and Well-being, organised by Leyden Academy, PLNT Leiden, Leiden University and the LUMC, took place. The thema of this year’s Honours Class was all about scarcity in the healthcare and welfare sector. The students pitched a solution for a challenge they had chosen by means of a homemade video.

PsyConnect
The team focused on improving the matches between clients and mental health care providers. From conversations with fellow students and care professionals, it emerged that those requesting help have a need for autonomy and would like to choose their own mental health care provider. The team set to work on this and developed the ‘PsyConnect’ platform, which makes it easier for the person requesting help to find the right care provider that meets his/her personal needs.

EURconnect
Another team started developing an app where students can find all relevant information in the social field and related to their academic career. Their research showed that fellow students lack a place where they can find all relevant information related to student life. For example about housing, mental health and peer coaches.

Hidden hunger
The last team took up the challenge to develop a solution for malnutrition among primary school children. This is a deficiency of vitamins and minerals. In their pitch, they demonstrated their solution to teach children more about healthy nutrition through meal planning in a playful way. Foods can be combined and recipes can be devised on a magnetic board.

About the Honours Class
The Honours Class Innovating Health and Well-being is an extracurricular course for talented master students, focusing on complex social and scientific subjects. In this fourth year, thirteen students spent nine weeks developing an innovation for a chosen challenge in the field of scarcity in the healthcare and welfare sector.

If you have any questions about the Honors Class, please contact Marleen Dohmen.

See ageing as a source of power instead of as a sign of decline and vulnerability, is the message of the newly published book “Silver Empowerment”, in which scientists from various disciplines discuss ways of improving self-reliance of elderly people. Promoting an age-friendly society is the main topic. The book covers a wide range of topics, such as resilience, loneliness, interaction between formal and informal care and how to involve older people in research and care.

The chapter with contributions from Elena Bendien, Tineke Abma and Susan Woelders,  is about participation and empowerment of older people in research. In this chapter they highlight a case study on research into social participation of older people in Zeeland. It is often thought that participatory research contributes to the empowerment of participants, in this case the elderly. Empowerment then refers to gaining more control over your life, but also to collective action, and therefore has a political component. However, we saw in our research that despite wonderful ideals, moments of dis-empowerment can occur.

One of the participants: ‘I am 85 years old. I have always been busy, and even when I had a job I always did volunteer work. But as years go by, especially when you are over 80, people seem to think you no longer want to do volunteer work or that you are no longer able to. They don’t ask you anymore and that’s a pity.’

Another example of dis-empowerment arose in the interaction between older participants in the study. This had to do with a few men dominating the conversation, which caused women to withdraw from the conversation, feeling that  there was no room for them to participate. Thus democratic decision-making was not possible. Situations like this require intervention from the researchers.

Participatory research is not merely a technical process and application of the right methods. It is about standing for the underlying principles and values and standing up for participants to prevent dis-empowerment. This requires what we call work ethics.

Silver Empowerment strives to offer every person the opportunity to grow old in a dignified and meaningful way, whilst being warmly connected to an inviting society.

The book is an Open Access ebook and is also available in paperback. It is published by Leuven University press.

“Mindfulness is awareness that arises through paying attention, on purpose, in the present moment, non-judgmentally, in the service of self-understanding and wisdom.” – Jon Kabat-Zinn

Mindfulness have been shown benificial in a lot of cases, amongst other:

• reduces pain
• lowers blood pressure
• increases self-awareness and focus
• improves your ability to solve problems
• decreases feelings of loneliness
• generally increase well-being

Visit the free public introduction to Mindfulness on July 26, 13.00 till 14.30 hours. By Berit Lewis, author of the book Ageing Upwards. Berit is an experienced and accredited Mindfulness Teacher, who has carried out research on mindfulness and ageing in cooperation with Leiden University Medical Centre (LUMC) and Leyden Academy.

Location at Leyden Academy on Vitality and Ageing, Poortgebouw, entrance Zuid, room 0.15. Rijnsburgerweg 10, 2333 AA Leiden. Also accessible online.

For whom and registration?
Everybody is welcome. After all, the earlier we start with mindfulness, the more years we will benefit from it. You can register by mailing your name to info@leydenacademy.nl. Please indicate if you would like to join live on location or prefer to follow the lecture online (Zoom link will follow after registration).

TOWARDS AGE-FRIENDLY POLICIES

The governmental COVID-19 policies worldwide reflect the national levels of economic and political development, and the cultural contexts for implementation. Furthermore, they are closely linked to the national policies on aging and long-term care. As a result, the COVID-19 policies lead to highly varied results worldwide. In the Netherlands the measures that were introduced, were accompanied by public discourses that were questioned with regard to their ageism, including so-called compassionate ageism. This type of ageism, implicit and difficult to detect, is based on the perception of older people as warm and likable but nonetheless incompetent and helpless. Literature points out that many policy measures that were intended to be age-friendly and to protect older people, turned out to be inherently ‘ageist,’ demonstrating a paternalistic behaviour toward older people by labelling them collectively as vulnerable. These findings underline the necessity to assess the age-friendliness of policy measures in times of crisis.

WHO framework
Protective measures that were taken during the COVID-19 pandemic, targeted older people as an at-risk group. How did older people in the Netherlands experienced the COVID-19 measures and policies introduced by the Dutch government? In our study we used the framework for age-friendliness of the World Health Organization (WHO), who define age-friendliness as ‘encouraging active aging by optimizing opportunities for health, participation and security in order to enhance quality of life as people age’. The framework allows for a broad assessment of the COVID-19 policies, as it incorporates eight areas: outdoor spaces, transportation, housing, social participation, respect and social inclusion, civic participation and employment, communication and information, and community and health services. We focused on the experiences of 74 older Dutch adults in the first and the second wave of the pandemic, to find out the impact in the earlier mentioned areas, and the lessons which can be learnt to better respond to a similar situation in the future.

Age-friendliness
The term ‘age-friendly’ is well-known in the Netherlands, among local policy makers, academic researchers, social- and care professionals and older people themselves who take part in the participatory research projects. Several Dutch cities already joined the WHO’s network, and by now several areas of age-friendliness have been incorporated in local policies. This study helps to understand whether age-friendliness has been incorporated in the Dutch governmental policy during the COVID-19 pandemic. The Dutch COVID-19 policies were predominantly developed on the basis of information provided by (bio)medical experts. The response of the government took time, which generated public critique, given the high death rate among older people, increased loneliness and limited freedom due to the lockdown.

Key points
The results of our analysis indicate that older people feel negatively affected in the areas of social participation, respect and social inclusion. Furthermore, the measures concerning communication and the health services were experienced as age-unfriendly. An important underlying issue of the COVID-19 measures is limitation of individual autonomy. The following key points can thus be made:

• A crisis such as a pandemic requires policies, based on interdisciplinary and experiential knowledge.
• Policies directed at older people can be experienced as ageist if the heterogeneity of that group is not considered.
• Policies directed at older people will benefit from examination within the WHO conceptual framework of age-friendliness ex ante and ex post.

From: Toward Age-Friendly Policies: Using the Framework of Age-Friendliness to Evaluate the COVID-19 Measures from the Perspectives of Older People in the Netherlands. Journal of Ageing & Social Policies, March 2023. Elena Bendien, Miriam Verhage, Jolanda Lindenberg, Tineke Abma.

In a transition from paternalistic to democratic care, Dutch nursing homes are expected to concentrate on the well-being of their residents and to align care with residents’ signifcant others. Although this way of working is affrmed in nursing home policies, care staff experiences diffculties with providing democratic care in practice. In co-creation with care staff (n = 110) throughout 11 nursing homes in the Netherlands, we therefore developed the enjoying life approach, plan, and training program. A responsive evaluation was completed including observations, conversations during and outside training sessions, and semi-structured interviews with care staff, residents, and signifcant others (n = 81). The enjoying life approach values the participation of all people involved in the care process and strives for person-centered care by learning from each other through sharing narratives and building personal relationships. This is in line with democratic care’s notion that good care starts in the lifeworld of care receivers and is the result of an intersubjective dialogue between care receivers and their caregivers. In this chapter we present our learning experiences with the enjoying life project and discuss implications for the democratic potential of organizations. We show that the participation of residents and signifcant others within the care process can lead to a mutual understanding of what is deemed “good” in a specifc situation. However, this requires the cultivation of an organization culture wherein different and sometimes conficting perspectives on what good care entails are acknowledged and a space is created to engage in dialogues about good care.

This is an abstract of chapter 3: ‘Democratic Care in Nursing Homes: Responsive Evaluation to Mutually Learn About Good Care’ by Marleen Dohmen, Josanne Huijg, Susan Woelders en Tineke Abma, which was publicshed in the book ‘Institutions and Organizations as Learning Environments for Participation and Democracy’, University of Innsbruck, Springer, January 2023.

Older women play an important role in providing care in our society, and there is a growing group of older women who are demonstrating leadership and being active in their local communities. Elena Bendien and Tineke Abma argue that traditional images of older women as caretakers limit women’s opportunities to give meaning to their own lifes. Even if women are given equal rights, the persistent image can limit women. We need to stop thinking of older women as grandmothers, informal caregivers, or nannies for the grandchildren. We need alternative roles and images to inspire new generations and create a much richer range of roles to suit the talents, creativity and aspirations of older women.

“We’re not just old women volunteering invisibly. I want people to see what we’re doing and what we can still do. I want people to understand the kind of power we represent.” Susan, age 67

Bendien and Abma wrote a chapter about it for the book Older Women in Europe – A Human Rights-Based Approach by Isabella Paoletti, about the strength, freedom, tenacity, determination, resilience, independence, social and political involvement of older women. The authors who contributed to this publication ask that space be made for the elderly and elderly women in particular. How will society tackle discrimination based on age and gender? How should work situations change to support older workers and older women in particular? How should the pension system change? The book takes a human rights-based approach and provides valuable insights for a wide range of human rights activists, professionals, policymakers and social scientists.

Today Leyden Academy welcomed a small delegation pre-medical students from Union College in New York. The students are currently touring the US, Canada, the UK and the Netherlands for an impression of how health care is structured in the various countries. In our country, the tour included amongst others visits to hospitals, a health centre, a centre specialising in physical and mental disabilities and an interview with a general practitioner. The goal is to provide students with an exposure to the different types of systems alongside an emphasis on teaching them how to compare and analyse the strengths and weaknesses of each model. Some issues are looked into in depth, such as how each system deals with decisions about allocating resources, regulating and managing costs, dealing with end of life issues, and supporting programs to improve public health.

At Leyden Academy, some of these topics were discussed. PhD candidate Miriam Verhage provided the students with an introduction to the mission and research projects of Leyden Academy as well as on the structure and financing of health care in the Netherlands. Miriam also gave a brief insight on the future of the Dutch method of care, on the impact of COVID-19 and on the care for vulnerable older populations.
The topic of the presentation of Lucia Thielman, researcher at Leyden Academy, was ‘Care for older people in a transitioning society’. In recent years the Netherlands has transitioned from a welfare state to a participation state. Within this transition care for older adults has changed from care provided in nursing homes to care provided at home. In addition, care is now more often being provided by informal providers in collaboration with formal care provides such as the primary care doctor.
Furthermore, the students got to experience what it feels like to be old, by wearing the ‘ageing suit’. Including shaky hands, unsteady feet and limited eyesight due to glaucoma or diabetic retinopathy, depending on the glasses you choose. A true eye-opener…