Ageing in a Changing Society: -Interdisciplinary Popular Science Contributions from the Newbreed Research School a Changing

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Ageing in a changing society: society -Interdisciplinary popular science contributions from the Newbreed research school Ageing in a changing society: – Interdisciplinary popular science contributions

Eleonor Kristoffersson and Thomas Strandberg (eds) from the Newbreed research school

Eleonor Kristoffersson and Thomas Strandberg (eds)

This project has received funding from the European Union’s Horizon 2020 research and innovation programme under the Marie Skłodowska-Curie grant agreement No 754285.

isbn 978-91-87789-33-5

Ageing in a changing society: – Interdisciplinary popular science contributions from the Newbreed research school ELEONOR KRISTOFFERSSON AND THOMAS STRANDBERG (EDS.)

Ageing in a changing society: – Interdisciplinary popular science contributions from the Newbreed research school

Authors: Andreea Badache Gibson Chimamiwa Maja Dobrosavljević Nadezhda Golovchanova Hany Hachem Charles Kiiza Wamara Vasiliki Kondyli Lucas Morillo Méndez Christiana Owiredua Konstantinos Papaioannou Sarita Shrestha Carmen Solares Canal Gomathi Thangavel Merve Tuncer Jort Veen ELEONOR KRISTOFFERSSON AND THOMAS STRANDBERG (EDS.)

Ageing in a changing society: – Interdisciplinary popular science contributions from the Newbreed research school

Title: Ageing in a changing society: – Interdisciplinary popular science contributions from the Newbreed research school Publisher: Örebro University, 2019 www.oru.se/publikationer

Print: Örebro University, Repro, 12/2019

ISBN 978-91-87789-33-5 Table of contents Introduction...... 7 Eleonor Kristoffersson and Thomas Strandberg Chapter 1 – The biology of ageing Successful Aging in the Oldest Old: Living longer. Living-well? ...... 13 Andreea Badache Can our lifestyle habits save us from developing ...... 19 age-related health issues? Konstantinos Georgios Papaioannou Later life: Living with inflammatory bowel disease and ...... 27 other co-morbidities Sarita Shrestha From Hippocrates to physical activity guidelines: ...... 33 Active ageing anno 2020 Jort Veen

Chapter 2 – Ageing and psychosocial adjustment Do newly recognised mental-health conditions in older adults ...... 45 bring new challenges? Maja Dobrosavljević Fear of crime in advanced age: A healthy vigilance or a ...... 51 problematic life restriction? Nadezhda Golovchanova Ageing after a life of criminal behaviour...... 59 © Authors 2019 Carmen Solares Title: Ageing in a changing society: Ageing with chronic pain: A life course perspective ...... 67 – Interdisciplinary popular science contributions Christiana Owiredua from the Newbreed research school Chapter 3 – Ageing and the fourth industrial revolution Publisher: Örebro University, 2019 Towards habit recognition in smart homes for people with dementia...... 77 www.oru.se/publikationer Gibson Chimamiwa Print: Örebro University, Repro, 12/2019 Universal evidence-based design: How can new technologies ...... 83 support design for ageing? ISBN 978-91-87789-33-5 Vasiliki Kondyli Implications of ageing for the design of cognitive interaction systems...... 93 Lucas Morillo-Mendez Internet of things for improving older adults’ quality of life...... 103 Gomathi Thangavel Chapter 4 – Ageing from a societal perspective Learning in older age...... 113 Hany Hachem From theory to practice: Toward advocacy in social work...... 121 practice to better address abuse of older people in developing countries Charles Kiiza Wamara Addressing diversity in later life...... 131 Merve Tuncer

Introduction Eleonor Kristoffersson and Thomas Strandberg

This is the second anthology written by doctoral candidatescandidates withinwithin thethe graduategrad- research schools focusing onuate ageing research at Örebroschools University.focusing on The ageing school at Örebronamed University.Newbreed Theis co school-funded by the EU Horizon 2020 1 programmenamed Newbreed and includes is co-funded 16 international by the EU Horizon doctoral 2020 studen programmets. The research1 and inschool- is part of the university’s strategiccludes 16 initiative international on ‘Successful doctoral students. ageing’. The researchresearch schoolschool isis part organised of the in four thematic areas: The biologyuniversity’s of ageing; strategic Ageing initiative and onpsychosocial ‘Successful adjustment; ageing’. The Ageing research and school the fourth is industrial revolution; and Ageingorganised from in afour societal thematic perspective. areas: The The biology forerunner of ageing; included Ageing 18 doctoral and psycho students- from different disciplines andsocial countries. adjustment; Ageing and the fourth industrial revolution; and Ageing fromSuccessful a societal ageing perspective. as a concept The forerunnercan be described included in many18 doctoral different students ways, but according to the World Healthfrom different Organization disciplines (WHO) and countries.it can be understood in a broader perspective as healthy ageing. From that point Successful of view, ageing ageing as ais concept an issue can during be described the life in course many .different Healthy ways, ageing but is defined as ‘the process of developingaccording to and the maintaining World Health the Organization functional ability (WHO) that it canenables be understood wellbeing inin older age’ (WHO, 2019). In thea broader contemporary perspective society, as healthy people ageing. worldwide From thatare livingpoint oflonger. view, Thisageing fact is anis not only a challenge, it also comesissue during with itthe opportunities life course. Healthy – for the ageing older is people, defined their as ‘the families process and of thedevel societies.- Despite this, there is littleoping evidence and maintaining to suggest the that functional older people ability today that enablesare experiencing wellbeing their in older later years in better health than earlierage’ (WHO, generation 2019).s. In the contemporary society, people worldwide are living longer.Health This is factan important is not only factor a challenge, for an activeit also and comes participatory with it opportunities life even in – older age, and at a biological levelfor the, ageing older people,results theirfrom familiesthe impact and theof cellularsocieties. damage Despite over this, time,there iswhich little leads to a decrease of body functionsevidence to and suggest finally that death. older Such people changes today may are differexperiencing from individual their later to years individual , and the process is not linearin better nor health depend thanent earlier upon generations. a person’s age in years. Many factors are involved in the ageing process, includ Healthing biological,is an important psychological factor for and an social active aspects and participatory. Ageing gives life rise even to issuesin concerning cognition and memoryolder age, tasks, and at and a biological ageing within level, ageing the society results isfrom associated the impact with of othercellular life transitions, for example, retirement,damage over relocation time, which of rolesleads and to ahousing. decrease Even of body if some functions of the and variations finally in older people’s health are genetic,death. Such much changes is due tomay physical differ fromand social individual environments to individual, and societies and the processas well as to personal characteristics. Theseis not factorslinear nor start dependent to influence upon the a age person’sing process age in at years. an early Many stage factors of life. are The environments that people liveinvolved in as inchildren the ageing, combined process, with including their personalbiological, characteristics, psychological haveand socialeffects on ageing. In developing a publicaspects. health Ageing perspective gives rise on to ageing,issues concerning it is important cognition not just and to considermemory thetasks, los ses associated with older age butand alsoageing to considerwithin the what society can beis doneassociated to reinforce with other recovery life andtransitions, psychosocial for growth. Ageing as a study objectexample, must retirement, therefore relocation focus on ofa rolesbio-psycho and housing.-social knowledgeEven if some foundation of the from an interdisciplinary perspective.variations in older people’s health are genetic, much is due to physical and socialEverybody environments is ageing. and People societies are as ageing well as in to jail personal or as former characteristics. criminals. These Migrants, who came from war to afactors foreign start country to influence late in thelife ageingand whose process pension at an earlyrights stage are henceof life. atThe a enviminimum,- are ageing. Men and womenronments are that ageing, people and live the in inequalitiesas children, incombined pension with payments their personalare significant. char- People do not only age in societies where they can move into a small flat or a care home, but also in poverty, in the cold without a home or enough to eat. Furthermore, people are ageing with psychological disorders, such as 1The research school is co-funded by the European Commission through the Marie neuropsySkłodowska-Curiechological Actions, impairments Co-funding. People of Regional, are also National ageing and with International the new Protechnology- to integrate in their everydaygrammes grant life. no.Thus, 754285. ageing research cannot be based on a stereotype of older persons but has to take into account all the variations that exist in younger life. Interdisciplinary research can theoretically be understood with support from a critical realistic Ageing in a changing society I 7 perspective. It can be stated that the reality is too complex to grasp within just one discipline, and the idea with critical realism is that the reality is stratified into levels (Danermark, 2002). The integration of knowledge from two or more levels is an essential part of the definition of interdisciplinary research, therefore, knowledge from several levels needs to be integrated into a deeper and/or a broader understanding of the ageing process. Alongside that explanation of an interdisciplinary approach we can also find examples of multidisciplinary and interdisciplinary ageing research that is driven by the recognition that a comprehensive understanding of complicated phenomena, such as ageing, is best achieved through contributions from different disciplines (Hagan Hennessy & Walker, 2011).

1 The research school is co-funded by the European Commission through the Marie Skłodowska-Curie Actions, Co- funding of Regional, National and International Programmes grant no. 754285. acteristics, have effects on ageing. In developing a public health perspective on ageing, it is important not just to consider the losses associated with older age but also to consider what can be done to reinforce recovery and psychosocial growth. Ageing as a study object must therefore focus on a bio-psycho-social knowledge foundation from an interdisciplinary perspective. Everybody is ageing. People are ageing in jail or as former criminals. Migrants, who came from war to a foreign country late in life and whose pension rights are hence at a minimum, are ageing. Men and women are ageing, and the inequalities in pension payments are significant. People do not only age in societies where they can move into a small flat or a care home, but also in poverty, in the cold without a home or enough to eat. Furthermore, people are ageing with psychological disorders, such as neuropsychological impairments. People are also ageing with the new technology to integrate in their everyday life. Thus, ageing research cannot be based on a stereotype of older persons but has to take into account all the variations that exist in younger life. Interdisciplinary research can theoretically be understood with support from a critical realistic perspective. It can be stated that the reality is too complex to grasp within just one discipline, and the idea with critical realism is that the reality is stratified into levels (Danermark, 2002). The integration of knowledge from two or more levels is an essential part of the definition of interdisciplinary research, therefore, knowledge from several levels needs to be integrated into a deeper and/or a broader understanding of the ageing process. Alongside that explanation of an interdisciplinary approach we can also find examples of multidisciplinary and interdisciplinary ageing research that is driven by the recognition that a comprehensive understanding of complicated phenomena, such as ageing, is best achieved through contributions from different disciplines (Hagan Hennessy & Walker, 2011). In this anthology, we divided knowledge of ageing into four chapters built on the thematic areas mentioned above. The biology of ageing, as a central theme within the field of biology, covers the extension of a healthy lifespan, or a ‘healthspan’. Ageing and psychosocial adjustment includes an understanding of positive and negative wellbeing in ageing individuals through interdisciplinary lifespan perspectives. Ageing and the fourth industrial revolution covers the potential impact that new technologies may have in the ageing process. It also tries to address how to design new assistive technologies that take into consideration the needs of older persons. Ageing from a societal perspective examines ageing processes within and across societies, for example, how ageing intersects with

8 I Ageing in a changing society class, gender and further social divisions such as economic, political and cultural dimensions. A bio-psycho-social perspective offers a holistic view in understanding different aspects of ageing in a changing society, and in the following presenta- tions we will see examples of the doctoral students’ research project on ageing in different environments – disciplinary, cultural and contextual. Moreover, this project is particularly timely and for the future in that the World Health Organization has appointed the next 10 years, 2020–2030 as The Decade of Healthy Ageing.

References: Danermark, B. (2002). Interdisciplinary research and critical realism: The example of disability research. Journal of Critical Realism, 5, 56–64. World Health Organization, WHO. 2019. Ageing and life-course. Retrieved from https://www.who.int/ageing/healthy-ageing/en/ Hagan Hennessy, C., & Walker, A. (2011). Promoting multi-disciplinary and inter-disciplinary ageing research in the United Kingdom. Ageing & Society, 31, 52-69.

Ageing in a changing society I 9

CHAPTER 1 The biology of ageing

Successful Ageing in the Oldest Old: Living longer. Living-well? Andreea Badache ‘A graceful and honourable old age is the childhood of immortality’ – Pindar

We are living longer! Should we celebrate? One of the most important accomplishments of the 20th century is the re- markable gain of about 30 years in life expectancy in the high-income re- gions such as Western Europe, USA, Canada, Australia and New Zealand as well as Japan, Spain and Italy. If the present yearly growth persists throughout the 21st century, we can expect that most babies born in 2000 will celebrate their 100th birthday (Christensen, Doblhammer, Rau, & Vaupel, 2009). Amazing, right? Now, these improvements have many positive and negative implications. Particularly, with these improvements a very important question arises: Do we live longer in better health or do we experience longer periods of late life with disabilities and functional limitations? Researchers, including us, policy-makers and people in general are wondering. Hence, this project will try to come up with an answer for the Nordic countries. As an attempt to answer the key question, let’s see what we know so far from previous research about the older population. We can start by looking at the demographic situation.

ANDREEA BADACHE Successful Aging in the Oldest-Old: Living longer. Living-well? 1 Ageing in a changing society I 13 So what do we know about the ageing population? We know that the proportion of older population has increased as fertility has declined and life expectancy has risen. In 2015, the world population reached 7.3 billion, of which 1.7% is 80 years or older (United Nations, 2015). Globally, the number of people aged 80 and above, often referred to as the oldest old, is the fastest growing segment of the population. Accord- ing to the UN, the number of people aged 80 and above in 2015 was 125 million. By 2050, this number is projected to triple, reaching 424 million worldwide, with 28% of the people aged 80 and above living in Europe (Healthy Ageing – A Challenge for Europe, 2006; United Nations, 2015). The oldest-old group is also the most prone to diseases and disability and the most understudied age group. Hence, with ageing, individuals are more likely to experience various chronic diseases such as cardiovascular diseases, diabetes and cancers. Age-related hearing and visual loss are two of the most prevalent health conditions and the leading causes of disabilities throughout the world, with about two-thirds of people above the age of 70 experiencing a degree of hearing loss (Leon & Woo, 2018; WHO, 2018). Another prevalent problem among the older people is the combination of visual and hearing loss, also referred as dual sensory loss (DSL), with studies showing that up to 21% of people over 70 might experience DSL (Brabyn, Schneck, Haegerstrom-Portnoy, & Lott, 2007; Saunders & Echt, 2007). DSL includes all grades, from mild, to severe and profound, and is considered to be a unique disability as visual loss and hearing loss are co-existing.

Are we all having the same ageing experience? Probably not. We are different, and older people are no exception to the rule. Some of them are experiencing one or more diseases, while others manage to maintain their proper functional ability (walking and doing activities of daily living) and experience a high level of well-being. Because of the ageing population, new concepts that attempt to define ageing processes throughout the lifespan have emerged. One of the most studied and discussed concepts in the literature is ‘successful ageing’. So, what does successful ageing mean? Even though there are several definitions, the concept it is still very debatable. Ageing successfully probably means different things to different people, depending on their living environment, their culture and their aspirations to reach old age. However, the most used definition of successful ageing is the one of Rowe and Khan, according to which, in order to be successfully ageing, you have to fulfill three criteria:

ANDREEA BADACHE Successful Aging in the Oldest-Old: Living longer. Living-well? 2 14 I Ageing in a changing society have good physical and cognitive functioning, avoid disability or diseases and be actively engaged with life (Figure 2) (Rowe & Kahn, 1997).

Figure 2. Rowe and Khan’s definition of successful ageing

This SA concept does not seem to account for the older adults who, despite having several chronic diseases and living with disabilities, still enjoy and are satisfied with their lives and might consider themselves as ageing successfully. For policy development, long-term care planning and disease prevention it is essential to know if people are living longer and healthier lives or whether the added years of life are lived in ill health and disability. Throughout this project, health is defined as ‘a state of wellbeing emerging from conductive interactions between individuals’ potentials, life’s demands, and social and environmental determinants’ (Bircher & Kuruvilla, 2014). In describing health for people with disabilities and older people, this model seems to be a good fit.

ANDREEA BADACHE Successful Aging in the Oldest-Old: Living longer. Living-well? 3 Ageing in a changing society I 15 It is time for some good news! We want to know if people are living longer and healthier lives. So far, we know that the environments where people live, their economic situation, education and other factors are also having an impact on health, mortality and morbidity. To date, empirical findings on disability trends in older populations are inconsistent and cannot indicate whether, through increasing life expectancy, people are living those additional years in good health or with extended periods of disability and illness (Beard & Bloom, 2015; United Nations, 2015; WHO, 2015). In 2017, a study determined, that despite living longer lives, populations could expect to live more time with functional health loss than in previous years due to living longer with chronic diseases (GBD 2016 DALYs & Collaborators, 2017). In Sweden, few studies on people aged 76 and above have shown worsening of health between 1992 and 2002, however, they observed a considerable decline in the prevalence of disabilities (Fors & Thorslund, 2015; Hossin, Östergren, & Fors, 2017; Sundberg, Agahi, Fritzell, & Fors, 2016). Furthermore, a Danish study comparing older people aged 90 and above born 10 years apart (1905 and 1915) showed positive development, concluding that longevity does not necessarily lead to high prevalence of disability in the very old. Moreover, the later-born cohort performed better on the cognitive tests and the activity of daily living (ADL) scale, suggesting that people are living longer with overall better functioning (Christensen et al., 2013). In Europe, another study showed that people interviewed in 2013 showed better cognitive function compared with people interviewed in 2004-05. Despite more people living to older age, their study showed improvements in cognitive functioning in later-born cohorts (Ahrenfeldt et al., 2018). For Denmark and Sweden, they also found improvements in the activities of daily living and instrumental activities of daily living (IADL) in the oldest age groups, whereas the improvements were less clear and small for physical functioning.

What is the aim of this project? This project aims to explore, analyse and compare whether and to what extent the last years of life in the oldest-old people in the Nordic countries are spent in good health, or whether they are experiencing their last period of life with extended periods of disability, poor health and decreased quality of life. Additionally, we will explore the perspectives of the oldest old on ‘successful ageing’ with the aim of redefining the concept by considering the

ANDREEA BADACHE Successful Aging in the Oldest-Old: Living longer. Living-well? 4 16 I Ageing in a changing society perspectives of the oldest old. Specifically, we will conduct four studies consisting of:

1. A systematic review of the lay perspectives of the oldest old on successful ageing. 2. A survey-based study to assess whether the decreasing rates of disability observed in Sweden and Denmark can be explained due to cognitive improvement. 3. A prediction-modelling study to look at the future trends in disability and life expectancy in Sweden. 4. A mixed-methods study to explore the perspectives of the oldest old on ‘successful ageing’ along with their views regarding the health- related activities and interventions to enhance its likelihood.

Why is this project relevant? Do we need it? This project is important for the area of ageing and health because the proposed studies have significant implications for improving the health and well-being of the ageing population and for advancing newer ageing research fields, particularly epidemiology. Furthermore, in the current project we aim to identify the determinants of health and disability by focusing on the entire lifespan. Additionally, the knowledge generated from the forecasting study can be used in policy-making for better provision of health and social services for the coming generations of older people. Based on the findings, concrete directions for optimised health promotion interventions that extend the healthy lifespan can be explored and developed by considering the perspectives of the oldest old.

About the author: Andreea Badache Andreea Badache is a PhD student in Disability Sciences at Örebro Univer- sity as part of the Newbreed doctoral program and Successful Ageing research school. Additionally, she is also part of the Swedish Institute for Dis- ability Research (SIDR). She obtained her BSc in Physiotherapy from Ro- mania, MSc in Rehabilitation Sciences from Belgium and MSc in Healthcare Policy, Innovation and Management from the Netherlands. Her academic interests include epidemiology of ageing and disability, social determinants of health, global and public health and health policy with an emphasis on chronic non-communicable diseases

ANDREEA BADACHE Successful Aging in the Oldest-Old: Living longer. Living-well? 5 Ageing in a changing society I 17 References Ahrenfeldt, L. J., Lindahl-Jacobsen, R., Rizzi, S., Thinggaard, M., Christensen, K., & Vaupel, J. W. (2018). Comparison of cognitive and physical functioning of Europeans in 2004-05 and 2013. International Journal of Epidemiology, 47(5), 1518–1528. doi:10.1093/ije/dyy094 Beard, J. R., & Bloom, D. E. (2015). Towards a comprehensive public health response to population ageing. Lancet, 385(9968), 658–661. doi:10.1016/s0140-6736(14)61461-6 Bircher, J., & Kuruvilla, S. (2014). Defining health by addressing individual, social, and environmental determinants: New opportunities for health care and public health. Journal of Public Health Policy, 35(3), 363–386. doi:10.1057/jphp.2014.19 Brabyn, J. A., Schneck, M. E., Haegerstrom-Portnoy, G., & Lott, L. A. (2007). Dual sensory loss: Overview of problems, visual assessment, and rehabilitation. Trends in Amplification, 11(4), 219–226. doi:10.1177/1084713807307410 Christensen, K., Doblhammer, G., Rau, R., & Vaupel, J. W. (2009). Age- ing populations: The challenges ahead. Lancet, 374(9696), 1196–1208. doi:10.1016/s0140-6736(09)61460-4 Christensen, K., Thinggaard, M., Oksuzyan, A., Steenstrup, T., Andersen- Ranberg, K., Jeune, B., … Vaupel, J. W. (2013). Physical and cognitive functioning of people older than 90 years: A comparison of two Dan- ish cohorts born 10 years apart. The Lancet, 382(9903), 1507–1513. doi:10.1016/s0140-6736(13)60777-1 Fors, S., & Thorslund, M. (2015). Enduring inequality: Educational disparities in health among the oldest old in Sweden 1992–2011. International Journal of Public Health, 60(1), 91–98. doi:10.1007/s00038-014-0621-3 GBD 2016 DALYs, & Collaborators, H. (2017). Global, regional, and national disability-adjusted life-years (DALYs) for 333 diseases and injuries and healthy life expectancy (HALE) for 195 countries and territories, 1990–2016: A systematic analysis for the Global Burden of Disease Study 2016. Lancet, 390(10100), 1260–1344. doi:10.1016/s0140-6736(17)32130-x Healthy Ageing – A Challenge for Europe. (2006).

ANDREEA BADACHE Successful Aging in the Oldest-Old: Living longer. Living-well? 6 18 I Ageing in a changing society Can our lifestyle habits save us from developing age-related health issues? Konstantinos-Georgios Papaioannou

What is age? Is it possible to stop it? Can we reverse it? These questions are not new, but the need for satisfactory answers becomes more and more relevant in an ageing world. Modern biological theories of ageing rely on one of two main categories: programmed theories and error theories. However, none of them seem to clarify the process of ageing in a satisfying manner (Jin, 2010). Moreover, the concept of ‘successful ageing’ has been introduced to describe the multidimensional character of the ageing process and set a direction model by defining success in ageing as a state, characterised by three components: absence of a disease-related disability, high levels of cognitive and physical functioning and active participation in life activities (Rowe & Kahn, 1997). This model distinguishes between ‘usual ageing’ and ‘successful ageing’, depending on the magnitude of decline in cognitive and physical function. However, it mainly relies on unrealistic perspectives for the majority of people and it seems to fail to connect with the individual’s principles of successful ageing (Bowling & Dieppe, 2005). Despite the crit- icism, Rowe and Kahn’s model is currently the most accepted approach in the biological perspective. Ageing is linked to a number of conditions and diseases, as well as to the progressive decline in various functions of the human body. Even though we are witnessing progress in research, the causes and the mechanisms of those age-related conditions are not fully understood yet. As health tends to deteriorate with age, more questions arise: Is this decline in health an effect of the ageing process? Or does it come up as an accumulation of lifestyle choices and habits that generate this negative outcome? For example, we currently know that the disturbance of metabolic energy imbalance, when the energy intake becomes much higher than energy expenditure, leads to weight gain and obesity. However, if we manage our food consumption and increase our physical activity levels, we can minimise or even eliminate the risk for both weight gain and obesity. In addition, individuals might lose weight and improve their overall health with the proper nutrition and training. Therefore, it is logical to investigate the link between lifestyle habits and their effects on health preservation and the development of age-related conditions and diseases. Moreover, Rowe and Kahn’s perspective on ageing

Ageing in a changing society I 19 generates another question: Can an individual shift from ‘usual ageing’ to ‘successful ageing,’ and how can be accomplished? The answers to these questions are not easy to address, mainly due to the multidimensional character of the ageing process. Researchers focus on specific aspects of health, examining various outcomes in order to investigate the involvement of ageing in the pathophysiology of several conditions, diseases and well-being. In an effort to expand the knowledge on these questions, Örebro University founded the interdisciplinary research school of ‘Successful Ageing’ and welcomed, with the NEWBREED programme, 16 new early-stage researchers from all over the world to work on various pro- jects on ageing. This chapter describes some of the basic concepts of new research in the field of ageing biology and medicine and presents a work-in- progress project within the research performed in ‘Successful Ageing’ and the NEWBREED programme. The project is performed by the Metabolism, Inflammation & Physical Activity (MIPA) research group of Örebro Uni- versity and focuses on the relationship between different lifestyle behaviours, such as physical activity and dietary habits, and a possible mediator of age-related health called meta-inflammation.

Inflammation and ageing Inflammation is the body’s response to a harmful stimulus, in order to pre- serve health. It consists of a complex set of tissue changes and occurs in various forms, depending on its location and duration. Inflammation occurring in the absence of any obvious infection or injury in older adults has been connected with a number of age-related diseases and conditions, including atherosclerosis, cardiovascular disease (CVD), type II diabetes mellitus (T2DM), bone diseases, chronic obstructive pulmonary disease (COPD), frailty, neurodegenerative diseases and cancer (Xu & Kirkland, 2016). Chronic low-grade inflammation is characterised by a slight increase in the levels of several inflammatory molecules in blood. These increases are frequently observed in older adults, therefore the term ‘inflammaging’ was introduced to describe the connection between ageing and the chronic low- grade inflammation (Franceschi et al., 2000). However, inflammaging is not always present in older adults and the magnitude of inflammation varies among individuals (Xu & Kirkland, 2016). To date, the causes and mechanisms of age-related chronic inflammation are not fully understood (Rea et al., 2018) and therefore this issue receives attention from researchers. Re- cent studies support the theory that chronic low-grade inflammation is linked to obesity and disturbances in metabolism through a state called

20 I Ageing in a changing society meta-inflammation (Gregor & Hotamisligil, 2011), which is discussed in the next chapter.

Meta-inflammation and ageing The concept of metaflammation or meta-inflammation (both terms are used in literature) was first introduced in 2006, to describe the inflammation generated by metabolic imbalance (Hotamisligil, 2006). This type of inflammation is mainly expressed as mild but chronic elevations in the levels of inflammation-related molecules (markers) in blood. Since its first description, scientists have embraced the concept and investigated the role of metabolism in the initiation of inflammatory responses and the disturbance of metabolic and inflammatory balances within an organism. The inflammation seems to be generated in metabolic cells such as adipose tissue and liver cells (Gregor & Hotamisligil, 2011). These cells seem to generate systemic inflammatory responses that disturb the metabolic balance and could result in immunometabolic diseases, which in turn could accelerate ageing and disabilities and lead to premature death (Hotamisligil, 2017). It is currently hypothesised that meta-inflammation is the missing piece of the inflammation-generation puzzle, connecting cellular and molecular mechanisms to explain the creation and development of a number of age-related diseases that are linked to inflammation. A number of these diseases and conditions are listed in a previous section of the present chapter (Inflammation and ageing).

Life-style behaviours, inflammation and ageing: Physical activity and nutrition Health declines with ageing due to physiological degradation in various organs and systems. The positive contribution of physical activity (PA) to the promotion of health, improvement of physical and mental function and assistance in treating against diseases and conditions such as obesity is well established. Despite the decades of research on the effects of PA on health, the impact of PA on inflammatory-related molecules and meta-inflammation is not fully clear yet. Studies support different hypotheses, and according to their findings, create a controversy on the issue. For example, some studies support the hypothesis that time spent in light physical activity (LPA) is associated with decreases in systemic inflammation (Autenrieth et al., 2009; Parsons et al., 2017), but not all studies agree (Green et al., 2014). Indeed, older adults tend to spend greater amounts of time in sedentary behaviour and therefore their responses in a PA stimulus might vary according

Ageing in a changing society I 21 to their physical fitness level. Our research group has previously shown that the beneficial effects of PA on major inflammatory markers depend on intensity (Nilsson et al., 2018). Also, the latter study shows an association between time spent in moderate and intense PA with inflammation-related molecules in blood, such as C-reactive protein (CRP) and fibrinogen. The present project is expanding the investigation on inflammatory molecules and examines the relation of PA to a number of additional molecules of inflammation. More details about the project are discussed in the next section of this chapter. The role of nutrition in obesity is well known, but its contribution to the pathology of age-related diseases and inflammation needs to be elucidated. Dietary habits indeed may have a part in generating or preventing the development of at least some age-related diseases (Shlisky et al., 2017; Calder et al., 2017). A recent study from our research group suggests that a dietary pattern could have beneficial effects by promoting an anti-inflammatory systemic response (Nilsson et al., 2019). The aim of our current project is to investigate the effects of a dietary pattern on a number of pro-inflammatory, anti-inflammatory and metabolic markers.

Our project Over the last two decades, interest in age-related inflammation has grown and new concepts and relations have been revealed. One of these concepts, meta-inflammation, connects disturbances in metabolic balance with inflammatory processes. This concept generates hope that life-style habits, which are known to improve and stabilise metabolic balance, might be a useful weapon to fight against a variety of age-related diseases. Despite increased interest from researchers, though, the role of life-style habits has not been fully elucidated yet. The Metabolism, Inflammation & Physical Activity (MIPA) research group of Örebro University is currently conducting a research project in order to explore the links between different lifestyle behaviours and molecules of meta-inflammation in blood of older adults, focusing on physical activity and dietary habits. Furthermore, within this project, the effects of those lifestyle behaviours on meta-inflammation markers are examined with widely-used scientific methods and techniques. The MIPA group is currently monitoring and measuring the physical activity and dietary habits of about 300 healthy older men and women (65–70 years old). During the second stage of the project, the levels of a number of pro-inflammatory, anti-in-

22 I Ageing in a changing society flammatory and metabolic molecules in blood will be measured. The analysis and the interpretation of those measurements are expected to produce new knowledge regarding the potential relationship between novel molecules of inflammation and life-style habits such as physical activity and nutrition. Furthermore, the present study attempts to make an innovative step in the process of answering the question: Can our lifestyle habits save us from developing age-related health issues?

About the author: Konstantinos-Georgios Papaioannou Konstantinos-Georgios G. Papaioannou is a doctoral student in Biology of Ageing at Örebro University. He is a member of the NEWBREED research program within the School of Successful Ageing and of the Metabolism, Inflammation & Physical Activity (MIPA) research group at Örebro Uni- versity. His current research focuses on the relationship between life-style behaviours on inflammation and overall health.

Ageing in a changing society I 23 References Autenrieth, C., Schneider, A., Döring, A., Meisinger, C., Herder, C., Koenig, W., Huber, G., & Thorand B. (2009). Association between different domains of physical activity and markers of inflammation. Medicine and science in sports and exercise, 41(9), 1706-1713. Bowling, A., & Dieppe, P. (2005). What is successful ageing and who should define it? British medical journal, 331(7531), 1548-1551. Calder, P.C., Bosco, N., Bourdet-Sicard, R., Capuron, L., Delzenne, N., Doré, J., … Visioli, F. (2017). Health relevance of the modification of low grade inflammation in ageing (inflammageing) and the role of nutrition. Ageing research reviews, 40, 95-119. Franceschi, C.I., Bonafè, M., Valensin, S., Olivieri, F., De Luca, M., Otta- viani, E., & De Benedictis, G. (2000) Inflamm-aging. An evolutionary perspective on immunosenescence. Annals of the New York academy of sciences, 908, 244-54. Green, A.N., McGrath, R., Martinez, V., Taylor, K., Paul, D.R., & Vella, C.A. (2014). Associations of objectively measured sedentary behavior, light activity, and markers of cardiometabolic health in young women. European journal of applied and occupational physiology, 114(5), 907-919. Gregor, M.F., & Hotamisligil, G.S. (2011). Inflammatory mechanisms in obesity. Annual review of immunology, 29, 415-445. Hotamisligil, G.S. (2006). Inflammation and metabolic disorders. Nature, 444(7121), 860-867. Hotamisligil, G.S. (2017). Inflammation, metaflammation and immunometabolic disorders. Nature, 542(7640), 177-185. Jin, K. (2010). Modern biological theories of aging. Aging and disease, 1(2), 72-74. Nilsson, A., Bergens, O., & Kadi, F. (2018). Physical activity alters inflammation in older adults by different intensity levels. Medicine and science in sports & exercise, 50(7), 1502-1507. Nilsson, A., Halvardsson, P., & Kadi, F. (2019). Adherence to DASH-style dietary pattern impacts on adiponectin and clustered metabolic risk in older women. Nutrients, 11(4), pii: E805.

24 I Ageing in a changing society Parsons, T.J., Sartini, C., Welsh, P., Sattar, N., Ash, S., Lennon, L.T., … Jefferis, B.J. (2017). Physical activity, sedentary behavior, and inflammatory and hemostatic markers in men. Medicine and science in sports & exercise, 49(3), 459-465. Rea, I.M., Gibson, D.S., McGilligan, V., McNerlan, S.E., Alexander, H.D., & Ross, O.A. (2018). Age and age-related diseases: Role of inflammation triggers and cytokines. Frontiers in immunolology, 9, 586. Rowe, J.W., & Kahn, R.L. (1997). Successful aging. Gerontologist, 37(4), 433-440. Sanada, F., Taniyama, Y., Muratsu, J., Otsu, R., Shimizu, H., Rakugi, H., & Morishita, R. (2018). Source of chronic inflammation in aging. Frontiers in cardiovascular medicine, 5, 12. Shlisky, J., Bloom, D.E., Beaudreault, A.R., Tucker, K.L., Keller, H.H., Freund-Levi, Y., … Meydani, S.N. (2017). Nutritional considerations for healthy aging and reduction in age-related chronic disease. Advances in nutrition, 8(1), 17-26. Xu, M., & Kirkland, J.L. (2016). Inflammation and ageing. In Bengtson, V.L. & Settersten, R. (Eds.) Handbook of theories of aging (3rd ed.). New York. Springer Publishing Company.

Ageing in a changing society I 25

Later life: Living with inflammatory bowel disease and other co-morbidities Sarita Shrestha

As a part of the book chapter, I will introduce my research in the field of inflammatory bowel disease (IBD) and its related co-morbidities along with rationale and knowledge gaps. Further, I will briefly explain the concept of successful ageing. In addition, I will discuss some theories of ageing by relating them to older adults living with IBD.

Introduction IBD is a long-standing disease of the gastrointestinal tract characterised by a wide range of symptoms such as abdomen pain and cramping, fever, di- arrhoea and urgency (Gisbert & Chaparro, 2014). Recent evidence indicates that the number of older adults diagnosed with IBD is increasing globally. IBD has long been believed to be a disease of the young, but 10%–15% of cases of IBD are diagnosed at ≥ 60 years of age (Gisbert & Chaparro, 2014). The rise in cases of IBD in older adults is mainly due to having aged with IBD (long-standing) or having developed it as an older adult (Gisbert & Chaparro, 2014). Many patients with IBD do not only suffer from symptoms due to luminal inflammation but also because of inflammation in other organs (Marineata, Rezus, Mihai, & Prelipcean, 2014). However, the explanation for this observation is unknown. Most of the lines of evidence related to the disease diagnosis, prognosis, treatment and management are based on studies conducted with younger adults. This may lead to misdiag- nosis and treatment delays in older patients with IBD, as older patients may differ from younger ones. Data on multiple life-long immune-related disorders and extraintestinal manifestations, when IBD affects several organs such as skin, joints and eyes, are sparse. Thus, the overall objective of the PhD research is to examine the impact of age on extraintestinal disorders (erythema nodosum, pyoderma gangrae- nosum, arthropathy in Crohns disease and ulcerative colitis etc.) and immune-related comorbidities of IBD (coeliac disease, primary sclerosing chol- angitis, psoriasis, rheumatic arthritis, diabetes type 1 etc.). Moreover, occurrences of these disorders will be studied in relation to genetic predispo- sition, shared environmental factors, and inflammation in patients with

Ageing in a changing society I 27 IBD. By conducting these studies, we attempt to facilitate the accurate diagnosis and identify risk factors related to the disease and thereby enhance their quality of life and assist them to age successfully.

Defining successful ageing What does ageing successfully really mean? The famous definition of successful ageing was provided by Rowe and Kahn (1997). According to their definition, to age successfully a person should have ‘low probability of disease and disease-related disability, high functional level both cognitive and physical, and active engagement with life’ (Rowe & Kahn, 1997). There are several definitions of successful ageing, but most of the definitions available today have been criticised. An important question to consider is: Can any older adults who have been suffering from IBD or other extraintestinal diseases age successfully? The answer is that we do not know, but looking back to the definition offered by Rowe and Kahn, those suffering from the disease probably cannot be said to be ageing successfully. At least it is probably not easy to achieve all the components of successful ageing. But it might also depend on how an individual perceives what successful ageing is. Some older adults might have completely different perceptions when it comes to ageing successfully compared with others. Could someone feel that they are really happy, functioning well and able to actively engage in their daily lives even though they have the disease? It could be true for older adults, whose priority in life is completely different from what the theory states, and who do not have a severe form of the disease. What I would like to stress here is that some people might become happy and satisfied with their life, even with successes that might seem very small to others in the world.

Living with IBD in later life, stigmatisation and disengagement theory In a second thought, older adults might slowly start to disengage from the outside world, and it may also give them high life satisfaction, that is, they might feel that they are ageing successfully. In addition, as a result of ageing, interaction decreases between the ageing persons and the others in the society (Cumming & Henry, 1961). According to the hypothesis of the disengagement theory, individuals who are successfully ageing have accepted and are complying with the disengagement, or the process of withdrawing from various activities within the society or from their active life (Cumming & Henry, 1961). Disengage- ment from active social lives gives satisfaction to ageing individuals, which

28 I Ageing in a changing society enhances their well-being by freeing them from the society’s expectations and demands (Bengtson & Settersten Jr, 2016). Older adults with IBD are ageing as well as in distress due to a chronic inflammatory disorder. Age- related changes occurring in older adults, physically and biologically include changes in inflammatory response. Individuals’ suffering from IBD is challenged not only by the disease itself but also by a wide range of psychosocial problems. The symptoms of IBD mentioned earlier, in the introduction, occur in a relapsing and remitting pattern. The symptoms create a burden, and limited treatment options and individuals’ reluctance to consult doctors and receive treatment due to feelings of shame are among the many factors that worsen the condition. Not only this, but patients with IBD also have a regular or temporary loss of bowel control. This may lead to stigmatisation, as it might mean a breach of social hygiene rules for others in the society (Dibley & Norton, 2013). Loss of bowel control may cause emotional distress and feelings of isolation among those individuals who experience it, which might result in a poorer quality of life. The situation may become even worse if the person suffering from IBD is an older adult. Also, problems related to bowel movements are more acceptable in certain decades of life compared to others (Dibley & Norton, 2013). For instance, a society considers such situations more usual for children or the very old.

Stigmatisation What is stigmatisation? Well, a simple definition according to Goffman states that stigma is ‘an attribute which is deeply discrediting’ (Goffman, 1963). The concept incorporates several factors such as prejudice, discrimination, embarrassment and shame. Stigma related to IBD might occur regardless of poor bowel control and it can distress an individual. Even if such incidents occur rarely, the presence of the disease itself might cause anxiety, which might be sufficient to disengage older adults suffering from IBD to avoid social activities (Dibley & Norton, 2013). The older adults with IBD might feel humiliated due to the risk of associated incontinence. Similarly, eye inflammation or skin rashes related to IBD, which may look like they are infectious, may also limit individuals with the disease to engage in such activities or disengage from interactions with others. Evidence shows that the disengagement theory is considered more adaptive in older age and it could even be beneficial under particular circumstances (Bengtson & Settersten Jr, 2016).

Ageing in a changing society I 29 However, Havighurst argued that, until successful ageing is well defined, it should not be assumed that either being active or disengaging is appropriate. Since all the measures of theory testing for successful ageing have been criticised, there is some difficulty in the testing of successful ageing theories (Havighurst, 1961). Havighurst also believed that, instead of only considering elements of disengagement, the combination from both activity and disengagement theories could explain the processes of overall biological, social and physical ageing. I do agree with Havighurst, regarding incorporating elements of activity and disengagement theory since this may help both active and passive groups of individuals to age successfully in their own way. To integrate both positive and negative aspects related to ageing, I would like to discuss the theoretical model of strength and vulnerability integration in older adults.

Strength and vulnerability integration (SAVI) It is a theoretical model that describes changes in emotional experience throughout the adult lifespan and it recognises both gains and losses related to age and emotional experiences (Bengtson & Settersten Jr, 2016). Accord- ing to this model, in older age, people regulate feelings by using emotion regulation strategies (Charles, 2010). Older adults also have more experience when it comes to several circumstances in life that expose them to negative emotions. This helps them to avoid, mitigate or at least reduce their exposure to negative feelings. As a result, older adults often tend to report higher levels of well-being and are often less affected by negative situations compared with younger adults (Charles, 2010). Incorporating such a theory might assist older adults living with IBD to reduce their negative feelings and live more meaningfully compared with younger individuals suffering from IBD. Moreover, an individual’s perception changes with age, influenced by perceived time left to live as well as by time lived. The SAVI model incorporates socio-emotional selectivity theory to explain why older adults are more effective in using emotion regulation strategies (Bengtson & Settersten Jr, 2016). The perceived time left to live is the main motivational factor that helps older adults to focus on emotionally meaningful experiences and thus maintain high levels of life satisfaction. Additionally, the SAVI model recognises the importance of time lived, its related life experiences and knowledge (Bengtson & Settersten Jr, 2016). However, due to increased physical problems related to ageing, it might pose greater issues for older adults when regulating high levels of emotions (Charles, 2010). When older

30 I Ageing in a changing society adults fail to avoid or mitigate negative emotions, the SAVI suggests that older adults have less ability to down-regulate the experiences of bad feelings. This down-regulation is related to the consequences of reduced physiological changes that occur with ageing (Bengtson & Settersten Jr, 2016). To conclude, it is important to conduct research on age-related differences in patients with IBD or other related disorders. In this research project, findings from older adults with IBD will be compared with early-onset and adulthood-onset IBD. We believe that the findings related to IBD and other associated disorders in older adults play a vital role towards better understanding these groups of individuals and the challenges they face. The findings might help public health professionals to promote health in older adults living with IBD. Thus, it might improve their overall health, enhance their quality of life and support them to achieve elements of successful ageing.

About the author: Sarita Shrestha Sarita Shrestha is a doctoral student at the NEWBREED research school within the focus area of Successful Ageing and the thematic area of the Bi- ology of Ageing. Her research environment is the Nutrition-Gut-Brain In- teractions Research Centre (NGBI) and her research team is working on Inflammatory bowel disease (IBD) and translational gastroenterology. She is affiliated with the School of Medical Sciences, Örebro University, Örebro, Sweden

Ageing in a changing society I 31 References Bengtson, V. L., & Settersten Jr, R. (2016). Handbook of theories of aging: Springer Publishing Company. Charles, S. T. (2010). Strength and vulnerability integration: A model of emotional well-being across adulthood. Psychological Bulletin, 136 (6), 1068–1091. Cumming, E., & Henry, W. E. (1961). Growing old, the process of disengagement: Basic Books. Dibley, L., & Norton, C. (2013). Experiences of fecal incontinence in people with inflammatory bowel disease: self-reported experiences among a community sample. Journal of Inflammatory Bowel Diseases, 19 (7), 1450–1462. Gisbert, J., & Chaparro, M. (2014). Systematic review with meta analysis: Inflammatory bowel disease in the elderly. Alimentary Pharmacology & Therapeutics, 39 (5), 459– 477. - Goffman, E. (1963). Stigma: Notes on the management of spoiled identity. Englewood Cliffs, NJ: Prentice-Hall. Havighurst, R. J. (1961). Successful Aging (Vol. 1). Marineata, A., Rezus, E., Mihai, C., & Prelipcean, C, C. (2014). Extraintestinal manifestations and complications in inflammatory bowel disease. Revista medico-chirurgicala a Societatii de Medici si Naturalisti din Iasi, 118 (2), 279–288. Rowe, J. W., & Kahn, R. L. (1997). Successful aging. The Gerontologist, 37 (4), 433–440.

32 I Ageing in a changing society From Hippocrates to physical activity guidelines: Active ageing anno 2020 Jort Veen

Around 400 before Christ, Hippocrates famously stated that ‘Eating alone will not keep a man well, he must also take exercise. And it is necessary, as it appears, to discern the power of various exercises, both natural exercises and artificial’. Although earlier civilisations have contributed to the idea that exercise can be beneficial for health, it was the Greek physician Hip- pocrates who specifically prescribed exercise to his patients to combat the negative influences of over-consumption, and essentially formed the birth of the ‘exercise is medicine’ concept (Tipton, 2014). The exercise is medicine concept is a global initiative started in 2007 by the American College of Sports Medicine with the aim of making the assessment of physical activity a standard in clinical care and encouraging health- care providers to prescribe their patients evidence-based training programmes under the guidance of qualified exercise professionals (Exercise Is Medicine, 2019). Simply stated, engagement in exercise and physical activity should be used to prevent, reduce, manage and treat diseases and to improve quality of life. Very interesting in this last sentence is the word ‘prevent’. While it’s very important to alleviate the effects of illness by exercise and physical activity, preventing or delaying the onset of illnesses or physical impairment is even better. Does this suggest that perhaps we should start being physically active before we get ill or impaired? Indeed, physical inactivity has been pointed out as the biggest public health challenge of the 21st century as lack in cardiorespiratory fitness is seen as an important contributor to all-cause mortality (Blair, 2009). Cardiorespiratory fitness is often quantified by measuring the individual’s maximal oxygen uptake (VO2max.) Often expressed in kilograms of bodyweight per minute (for example, 44 ml/kg/min), VO2max tends to decline at a rate of 1% per year after the age of 25 (Lambert & Evans, 2005). Generally speaking, this means that the older you are, the more you will be affected by this decline in cardiorespiratory fitness, including its associated negative effects on health. While cardiorespiratory fitness is important for general health, it also has important implications for functional ability. Imagine an older-aged person walking to the grocery shop, picking up the groceries, walking back home with a bag full of food, and carrying it up the stairs. Research shows that

FORNAME SURNAME Title of the thesis (or part of title) 9 Ageing in a changing society I 33 to walk comfortably at a speed of 3 miles per hour, a minimum VO2max of 25 ml/kg/min is required (Young, 1997) and the minimum threshold VO2max to live independently is suggested to fall between 15 and 18 ml/kg/min (Paterson et al.,1999). In addition to cardiorespiratory fitness, muscular strength and power are also very important contributors to maintaining physical ability. When re- turning to the example of the older person who goes grocery shopping, it is not hard to understand that carrying the bag of groceries involves an important muscular strength element. Between the ages of 65 and 89 years, a loss of 1-2% of muscle strength has been reported (Young, 1997). However, the decline in strength starts even earlier, and of those who are 60 years and older, 15-30% are unable to lift or carry a weight of just 4.5 kg (Tieland et al., 2018). This age-related loss in muscle mass and function, also termed sarcopenia, recently widely received attention from scientists and health- care practitioners.

Photo 1. Sarcopenia can lead to a loss in independence.

10 FORNAME SURNAME Title of the thesis (or part of title) 34 I Ageing in a changing society In reality, many functional activities, like load carrying while grocery shopping, consist of a combination of both cardiorespiratory fitness and strength (Holviala et al., 2010). Early research by Borghols et al., (1978) investigated load carrying during walking and shows that oxygen uptake, heart rate and pulmonary ventilation (breathing) increases linearly with the amount of weight. This means that older people are more affected by the impact weight carrying has on their aerobic capacity, which is even further aggravated by walking uphill or taking the stairs. Thus, delaying the decrease in maximal oxygen uptake and of muscular strength is not only important for older people to stay healthy but also to prolong the time they can live independently. Exercise and physical activity can be an important strategy to attain this goal. The principle of the exercise regime by Hippocrates was simple: just do a little exercise, not too little and not too much. Combine this with eating in moderation and, according to Hippocrates, this would be the safest way to live a healthy life. To be honest, it is hard to argue with his statement. However, it leaves us with quite a few questions. How much is enough? What about the intensity? How often should it be performed, and are all forms of exercise of physical activity equal? Based on many scientific publications, the World Health Organization has published physical activity recommendations consisting of at least 150 minutes of moderate- to vigorous-intensity aerobic physical activity or 75 minutes of vigorous physical activity per week. Each session should be at least 10 minutes in duration and spread throughout the week. For further health benefits, older adults are recommended and encouraged to double the general recommendations for physical activity and additionally engage in a strength training programme twice a week and, if needed, balance training three times a week. Ideally, specific exercise programmes should be performed under the guidance of a qualified exercise practitioner, and older people with disabilities should aim to be as active as they are able to be. Indeed, despite their decline in cardiorespiratory fitness and muscular strength, older people can benefit highly from training programmes. In fact, older people can make similar relative improvements in aerobic capacity when compared to younger people. For example, a study by Kohrt et al., (1991) investigated the effect of a 12-month-long training programme consisting of 45-minute training sessions four times a week at an intensity between 76% and 83% of their maximal heart rate in 60- to 71-year-old males and females. No significant difference in VO2max improvement was found in between age groups or gender.

FORNAME SURNAME Title of the thesis (or part of title) 11 Ageing in a changing society I 35 Older-aged people can greatly benefit from resistance training programmes as well, and research shows that programmes consisting of 10 week, three days per week training at 80% at each individual one’s repetition maximum leads to an average improvement of 75.9% (37.4–134%) in muscle strength (Lambert & Evans, 2005). In comparison to younger people, older people see similar progression, although differences between specific muscles have been reported. Furthermore, research by Melov et al., (2007) shows that a resistance training programme can reverse a gene-expression profile that shows mitochondrial dysfunction. Simply stated, their research suggests that resistance training can reverse the ageing process in human skeletal muscle.

Photo 2. It is important to stay active, even at older age.

It may be clear that people can benefit very well from exercising and being physically active at old age. However, coming back to the old credo that prevention is better than the cure, the question arises whether it matters what you have done previously in life. Interesting in this light is finding that the decline in VO2max in untrained individuals is 1% per year, however, master athletes participating in endurance sports see a decline of only 0.5% per year (Bortz & Bortz, 1996). Even more, a non-significant 1.7% decline over 10.1 in master athletes who continued training at a competitive level was reported by Pollock et al., (1986). However, master athletes who continued training but reduced their training intensity lost 12.6% of their VO2max during this same period. This suggests that staying active and participating in intense aerobic exercises is important to delay the age-related decline in VO2max. Furthermore, research suggests a period during life

12 FORNAME SURNAME Title of the thesis (or part of title) 36 I Ageing in a changing society where functional capacity is optimal, after which a decline sets in. This period of ‘optimal functional capacity’ is described by Kuh et al. (2014) as acting as a functional reserve. In other words, the higher the functional reserve, the more of a buffer is present to delay the moment where disability and loss of independence will set in. This makes a life course approach of exercise and physical activity to optimise physical ability at older age an interesting and important topic to further explore, especially in the context of our global ageing population and its associated health-care costs.

Photo 3. Competitive master endurance athletes experience a minimal decline in VO2max.

Nevertheless, most of us are not athletes who train seriously during our lives. This means that we should primarily focus on the physical activity behaviours of the general population during the life course and how these behaviours affect physical ability and fitness at older age. Currently only a few studies have investigated the effects of previous physical activity at different stages of adulthood, and these studies reported a positive effect on physical ability (Hinrichs et al., 2014; Patel et al., 2006; Stenholm et al., 2016; Tikkanen et al., 2012) and indices of strength (Tikkanen et al., 2012) in older males and females. Furthermore, research by Edholm et al., (2019) shows that older women who have been most physically active throughout adulthood had a better physical function, irrespective of their present PA

FORNAME SURNAME Title of the thesis (or part of title) 13 Ageing in a changing society I 37 level. Simply stated, older people can benefit from past physical activity and exercising, even when they are currently inactive or not able to be active due to injury or disability. This is an important finding, especially for women since older women tend to suffer more from functional limitations at old age compared to men (Murtagh & Hubert, 2004). But now let’s take a look at the different types of physical activity. Phys- ical activity can roughly be divided into leisure time physical activity, consisting of exercises and sports activities but also cycling to work or walking the dog, and occupational physical activity. From the above-mentioned articles, only the study by Hinrichs et al., (2014) looked at both leisure time physical activity and occupational physical activity during the life course and reported a reverse effect of heavy occupational physical activity but not light occupational physical activity. A study by Kitamura et al., (2011) followed post-menopausal women for 5 years and found a positive effect of housework and farm work on physical ability. While many studies reported positive effects of leisure time physical activity, the negative effects of occupational physical activity on functional ability seems to depends on the intensity-duration relation and the type of work.

Photo 4. Heavy work during the life course can negatively influence physical function at older age.

14 FORNAME SURNAME Title of the thesis (or part of title) 38 I Ageing in a changing society Despite the overwhelming research confirming that physical activity and exercising are important for staying healthy and physically able, research regarding life-course physical activity is limited. For example, no studies have investigated the effect of specific endurance or strength sports activities over longer periods during adulthood and their effects on physical ability at older age. And performing these studies is challenging. To retrace information from participants, researchers have to rely on historical questionnaires, which involve methodological challenges like recall bias. And for the future? With today’s technological advancements it is possible to start following people’s physical activity and exercise behaviours though apps and online platforms. These technologies will make it much easier to quantify physical activity and measure corresponding physiological and psychological responses and eventually will help us to quantify Hippocrates’ training principle of exercising ‘not too little and not too much’ so we can live a healthy life.

About the author: Jort Veen Jort Veen is a PhD student in Biology of Ageing within the Newbreed program at the Örebro University. His research project, with the Metabolism, Inflammation and Physical Activity (MIPA) research group, focuses on the effects of physical activity and diet during the life course and their effect on physical function in older adults.

FORNAME SURNAME Title of the thesis (or part of title) 15 Ageing in a changing society I 39 References Blair, S. N. (2009). Physical inactivity: The biggest public health problem of the 21st century. British Journal of Sports Medicine, 43(1), 1–2. Borghols, E. A., Dresen, M. H., & Hollander, A. P. (1978). Influence of heavy weight carrying on the respiratory system during exercise. Euro- pean Journal of Applied Physiology and Occupational Physiology, 38(3), 161–169. Bortz, W. M. 4th., & Bortz, W. M. 2nd. (1996). How fast do we age? Ex- ercise performance over time as a biomarker. The Journals of Gerion- tology. Series A, Biological Sciences and Medical Sciences, 51(5), 223– 225. Edholm, P., Nilsson, A., & Kadi, F. (2019). Physical function in older adults: Impacts of past and present physical activity behaviors. Scandi- navian Journal of Medicine and Science in Sports, 29(3), 415–421. Exercise Is Medicine. (2019). Exercise Is Medicine: A global health initiative. Retrieved from https://www.exerciseismedicine.org/ Hinrichs, T., Von Bonsdorff, M. B., Törmäskangas, T., Von Bonsdorff, M. E., Kulmala, J., Seitsamo, J., … Rantanen, T. (2014). Inverse effects of midlife occupational and leisure time physical activity on mobility limitations in old age: a 28-year prospective follow-up study. Journal of the American Geriatrics Society, 62(5), 812–820. Holviala, J., Häkkinen, A., Karavirta, L., Nyman, K., Izquirdo, M., Gorostiaga, E.M., … Häkkinen, K. (2010). Effects of combined strength and endurance training on treadmill load carrying walking performance in aging men. Journal of Strength and Conditioning Re- search, 24(6), 1584–1595. Kitamura, K., Nakamura, K., Kobayashi, R., Oshiki, R., Saito, T., Oyama, M., … Yoshihari, A. (2011). Physical activity and 5-year changes in physical performance tests and bone mineral density in post- menopausal women: The Yokogoshi Study. Maturitas, 70(1), 80–84. Kohrt, W. M., Malley, M. T., Coggan, A. R., Spina, R. J., Ogawa, T. Ehsani, A. A., … Holloszy, J. O. (1991). Effect of gender, age and fitness level on VO2max to training in 60-71yr old. Journal of Applied Physiology, 71(5), 2004–2011.

16 FORNAME SURNAME Title of the thesis (or part of title) 40 I Ageing in a changing society Kuh, D., Karunananthan, S., Bergman, H., Cooper, R. (2014). A life- course approach to healthy ageing: maintaining physical activity. Pro- ceedings of the Nutritional Society, 73(2), 237-248 Lambert, C.P., & Evans, W.J. (2005). Adaptations to aerobic and resistance exercise in the elderly. Reviews in Endocrine & Metabolic Dis- orders, 6(2), 137–143. Melov, S., Tarnopolski, M. A., Beckman, K., Felkey, K., & Hubbard, Al. (2007). Resistance exercise reverses aging in human skeletal muscle. PLos One, 2(5), e465. Murtagh, K. N., & Hubert, H. B. (2004). Gender differences in physical disability among an elderly cohort. American Journal of Public Health, 94(8), 1406–1411. Patel, K. V., Coppin, A. K., Manini, T. M., Lauretani, F., Bandinelli, S., Ferrucci, L., & Guralnik, J. M. (2006). Midlife physical activity and mobility in older age: The inCHIANTI study. American Journal of Pre- ventative Medicine, 31(3), 217–224. Paterson, D.H., Cunningham, D. A., Koval, J. J., & St Croix, C.M. (1999). Aerobic fitness in population of independently living men and women aged 55-86 years. Medicine and Science in Sports and Exercise, 31(12), 1813–1820. Pollock, M. L., Foster, C. Knapp, D., Rod, J. L., & Schmidt, D. H. (1987). Effect of age and training on aerobic capacity and body composition of master athletes. Journal of Applied Physiology, 62(2), 725–731. Stenholm, S., Koster, A., Valkeinen, H., Patel, K. V., Bandinelli, S., Gural- nik, J. M., & L, Ferrucci. (2016). Association of physical activity history with physical function and mortality in old age. The Journals of Gerontology. Series A, Biological Sciences and Medical Sciences, 71(4), 496–501. Tieland, M., Trouwborst, I., & Clark, B.C. (2018). Skeletal muscle performance and ageing. Journal of Cachexia, Sarcopenia and Muscle, 9(1), 3–19.

FORNAME SURNAME Title of the thesis (or part of title) 17 Ageing in a changing society I 41 Tikkanen, P., Nykänen, L., Lönnroos, E., Sipilä, S., Sulkava, R., & Hartikainen, S. (2012). Physical activity at age 20-64 years and mobility and muscle strength in old age: A community-based study. The Journals of Gerontology. Series A, Biological Sciences and Medical Sci- ences, 67(8), 905–910. Tipton, C. M. (2014). The history of “Exercise Is Medicine” in ancient civilizations. Advances in Physiology Education, 38(2), 109–117. Young, A. (1997). Ageing and physiological functions. Philosophical Transactions of the Royal Society B, 352(1363), 1837–1843.

18 FORNAME SURNAME Title of the thesis (or part of title) 42 I Ageing in a changing society CHAPTER 2 Ageing and psychosocial adjustment

Do newly recognised mental-health conditions in older adults bring new challenges? Maja Dobrosavljević

Introduction Previous research has pointed to a broad range of factors that could play a role in ageing successfully. Along the lifespan of an individual, these factors can be the absence of physical/mental disability and conditions such as diabetes, arthritis, depression, substance abuse etc., and/or the presence of health-promoting behaviours, such as a healthy diet and regular exercise. On the other hand, certain factors, such as marital status, gender, education and income, have not been consistently associated with successful ageing (Depp & Jeste, 2006). Successful or healthy ageing can be defined in many different ways. Here, we will focus on one of its crucial determinants defined by Rowe and Kahn (1997), which differ- entiates between older adults who keep their mental and physical health compared to those who have developed certain health issues. More specifically, we will aim to investigate whether some of the health problems that commonly appear at an advanced age are more pronounced in one specific and, usually, un- recognised population of older people: older adults with Attention Deficit/ Hyperactivity Disorder (ADHD). In this segment, I will describe some of the basic concepts of my doctoral project, which aims to investigate ADHD in older age and a potential association with age-related disorders, such as dementia and cardiovascular disorders.

ADHD as a lifelong condition ADHD is a common neurodevelopment disorder associated with problems with attention, hyperactivity and impulsivity, which can interfere with everyday functioning (such as ability to organise and perform complex activities in school or at work). It affects around 5% of children and adolescents (Polanczyk, De Lima, Horta, Biederman & Rohde, 2007) and 2.5% of adults (Simon, Czobor, Bálint, Mészáros & Bitter, 2009) across the world. In older adults, prevalence of ADHD ranges from 1% to 6.2% (Torgersen, Gjervan, Lensing & Rasmussen, 2016). ADHD used to be seen as a disorder of childhood, however, in the newest edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5; American Psychiatric Association, 2013) it is described as a potentially persistent and lifelong condition. Symptoms of ADHD may vary from person to person, between women and men, and across different life stages. For example, in boys, hyperactivity may be

9 Ageing in a changing society I 45 the most prominent feature of the disorder; while in girls, problems with attention can be more prominent. On the other side, in adults we may observe substance abuse and risk-taking behaviours, frequent accidents and the presence of other mental health problems. Nevertheless, significant problems with attention and everyday functioning may persist to middle and older age in around 60% of children diagnosed with the condition. Additionally, ADHD is linked to an increased risk for many physical and mental health disorders and with potentially serious pharmacological treatment side effects in older age (Torgersen et al., 2016). With the growing population of older people across the world, it has become increasingly important to investigate how chronic and lifelong conditions such as ADHD affect health and well-being in advanced age.

What age do we consider as old age? An important issue in ageing research is our approach to age categorisation. When is the beginning of old age? Is it at the retirement age? Should we consider cultural and geographical factors or our specific research questions in defining older age? Alternatively, can we approach ageing as a lifelong process rather than as a category? In the current project, we will try to address these questions by covering age groups that are commonly overlooked in scientific literature. Most studies on ADHD are conducted in children, adolescents and younger adults. On the other side, we have very limited knowledge on ADHD in people over 50. Individuals over 50 are often excluded from scientific studies on ADHD due to potential difficulties in remembering or recalling information from the past. This can be a problem in research whenever we try to collect information from participants regarding their past experiences, and, in particular, when those experiences hap- pened years or even decades ago. In order to diagnose an adult with ADHD, clinicians often rely only on the information provided by the patient, while in children and adolescents this information is combined with reports from par- ents/guardians. In ADHD research, patients or participants in a study need to remember whether they had symptoms in childhood. However, regardless of potential challenges with remembering information, older individuals should not be overlooked. Potentially, their reports could be combined with reports of their family members. Older adults can still experience significant issues related to ADHD that may interfere with their everyday functioning and may negatively affect their health. Increased risk for many physical and psychological disorders associated with ADHD can lead to an accelerated rate of ageing and shorter lifespan in people affected by it. Thus, a commonly used age cut-off of 60 or 65

10 46 I Ageing in a changing society years old (World Health Organization, 2015) may not be appropriate for this population.

Importance of the life-course perspective Rather than choosing a certain age as a cut-off for older age, alternatively, we can try to understand determinants of successful ageing from a life-course perspective. This can be a useful perspective in observing cumulative effects of a certain condition across the lifespan of an individual. In the current doctoral project, we will place a particular emphasis on potential predictors that indicate the level of individual psychosocial adjustment across the lifespan, such as educational level, occupation, socio-economic status, mental health, lifestyle choices, criminality and quality of social connections and social support. Psychosocial factors, such as negative and prolonged emotional states and stress, and the lack of social support, may be linked to accelerated ageing rate and a higher risk for developing age-related disorders (such as dementia, cardiovascular disorders, type 2 diabetes, etc.). ADHD, if left untreated, can have a lasting and persistent impact on health starting from early childhood, throughout adulthood, reducing opportunities for employment and a stable environment. Over time, individuals with ADHD can display unhealthy behavioural patterns, such as eating unhealthy food, alcohol and drug abuse, smoking, not exercising enough, and participating in risky behaviours that can damage their physical and psychological health. Thus, even though symptoms of ADHD may be less severe in older age, their adverse effects can be persistent throughout a person’s life.

ADHD and neurodegenerative disorders In people with ADHD certain cognitive deficits can be observed across the lifespan (Seidman, 2006). These cognitive deficits may range from problems with attention and forgetfulness to problems with planning activities, complex thinking processes and having trouble in completing school/work tasks etc. Moreover, ADHD in adults, and in particular those above 50 years of age, shares many symptoms with early phases of dementia, often referred to as mild cognitive impairment (MCI) (Callahan, Bierstone, Stuss, & Black, 2017). Shared signs of ADHD and MCI can be recognised in pronounced difficulties with organising activities, inability to sustain attention, and memory problems, in addition to behavioural and psychiatric symptoms such as sleep disturbances, anxiety and depression. However, other authors argue that cognitive decline in older adults with ADHD is limited to attention and working memory (a part of the short-term memory responsible for containing information necessary for solving

11 Ageing in a changing society I 47 complex tasks). Additionally, this cognitive decline might be explained by ac- companying depressive symptoms (Semeijn et al., 2015).

Figure 1. Suggested pathways between ADHD and MCI/dementia

Although coming from the limited evidence, a potential link between ADHD and neurodegenerative disorders (MCI and different types of dementia) can be suggested. Callahan et al. (2017) proposed two potential pathways between ADHD and MCI, defined here as a prodromal stage of dementia (see Figure 1). In Hypothesis 1, it is proposed that certain genetic and/or early neurodevelop- mental factors can produce abnormalities in the nervous system that may lead to both ADHD in childhood and MCI/dementia later in life. On the other side, Hypothesis 2 suggests that ADHD and MCI/dementia do not share the same pathophysiological processes, but rather common cumulative health-compromising factors that come between the onset of ADHD and the onset of MCI and dementia. As we previously argued, older people with ADHD have higher risks of developing psychiatric and somatic disorders in comparison with non-affected individuals (Torgersen et al., 2016). In addition, other factors, including poor lifestyle behaviours and lower socio-economic status across the lifespan, may be just some of the health-compromising effects of ADHD that can lead to significant cognitive decline in older age.

12 48 I Ageing in a changing society Only a few studies addressed the question of whether people with ADHD are at higher risk of developing MCI or dementia. In order to gather available evidence, we plan to systematically search the literature using different electronic databases and to contact experts in the field. In the next step, we will obtain and use the data from the Swedish National Patient Register, which covers almost total population of Sweden and contains information on obtained medical diagnoses. Additionally, in line with the proposed Hypothesis 2, we aim to investigate whether risk-taking behaviours (traffic accidents), psychiatric (depression, anxiety, substance abuse, and suicidal behaviour) and physical disorders (cardiovascular diseases and diabetes) may play a role in mediating the association between ADHD and MCI/dementia.

Conclusion Changing the perspective on ADHD from a childhood condition towards being a lifelong condition could lead us towards better understanding of neuropsychological mechanisms of ageing in general. With this change in perspective, new challenges come too. Scientific and clinical community might need to consider a modification of the current diagnostic criteria to adjust them to distinctive characteristics of older adults. Additionally, currently available treatment solutions might need modifications, as well, to meet the medical and psychological needs in older age. In conclusion, in order to mitigate the effects of cumulative disadvantages across the life course and a potential accelerated ageing rate in people with ADHD, it would be beneficial to develop age-specific prevention programmes that target modifiable psychosocial and environmental factors. The focus of these programmes can be on building new health-promoting behaviours through participating in group activities for physical training, learning to prepare healthy meals, creating new social connections and opportunities, etc.

About the author: Maja Dobrosavljevic Maja Dobrosavljevic is a PhD student within the Newbreed Successful ageing programme, under Ageing and psychosocial adjustment thematic area. She is also a part of the research project: Causes and consequences of lifespan multi- morbidity in Attention Deficit/Hyperactivity Disorder (ADHD) at the School of Medical Sciences, Örebro University, Sweden. The focus of her PhD project is to investigate ADHD in older adults and a potential link of ADHD and age-related disorders, such as dementia.

13 Ageing in a changing society I 49 References American Psychiatric Association (2013). Diagnostic and statistical manual of mental disorders. 5th edition. Author; Washington, DC: American Psychiatric Association. Callahan, B. L., Bierstone, D., Stuss, D. T., & Black, S. E. (2017). Adult ADHD: Risk factor for dementia or phenotypic mimic? Frontiers in Aging Neuroscience, 9, 260. Depp, C. A., & Jeste, D. V. (2006). Definitions and predictors of successful aging: A comprehensive review of larger quantitative studies. The American Journal of Geriatric Psychiatry, 14(1), 6–20. Polanczyk, G., De Lima, M. S., Horta, B. L., Biederman, J., & Rohde, L. A. (2007). The worldwide prevalence of ADHD: A systematic review and metaregression analysis. American Journal of Psychiatry, 164(6), 942-948. Rowe, J. W., & Kahn, R. L. (1997). Successful aging. The Gerontologist, 37(4), 433–440. Seidman, L. J. (2006). Neuropsychological functioning in people with ADHD across the lifespan. Clinical Psychology Review, 26(4), 466–485. Semeijn, E. J., Korten, N. C. M., Comijs, H. C., Michielsen, M., Deeg, D. J. H., Beekman, A. T. F., & Kooij, J. J. S. (2015). No lower cognitive functioning in older adults with attention-deficit/hyperactivity disorder. International Psychogeriatrics, 27(9), 1467–1476. Simon, V., Czobor, P., Bálint, S., Mészáros, A., & Bitter, I. (2009). Prevalence and correlates of adult attention-deficit hyperactivity disorder: Meta-analysis. The British Journal of Psychiatry, 194(3), 204–211. Torgersen, T., Gjervan, B., Lensing, M. B., & Rasmussen, K. (2016). Optimal management of ADHD in older adults. Neuropsychiatric Disease and Treatment, 12, 79. World Health Organization. (2015). World report on ageing and health. World Health Organization. Retrieved from: https://www.who.int/ageing/events/world-report-2015-launch/en/

14 50 I Ageing in a changing society Fear of crime in advanced age: A healthy vigilance or a problematic life restriction? Nadezhda Golovchanova

Well, they tried … to grab my handbag but that didn’t work out! … Eh, two youngsters were sitting on a bench, I was out walking between half past eleven and half past twelve… and ‘now a lady comes, shouldn’t we grab her bag?’ So I said, ‘do you think you fit in a lady bag, in town? Are you a little bagboy? Are you sure my colour of lipstick fits you?... [Afraid voice, imitat- ing the robber:] ‘No, it was only a joke!’ … ‘I didn’t think it was very funny’, I said, ‘but enjoy your day!’ ‘You too, little lady!’ they answered. … I went home with my bag, I would never in my life have given it away, stupid! Focus group fragment, Rypi (2012, p.171)

This story of a 69-year-old lady told in a focus group study on fear of crime carried out by Anna Rypi at Lund University contrasts considerably with a perception of older people as being helpless and vulnerable against crime and, as a result, fearing crime more than younger people. Such perception originates from a large number of survey studies that have indicated that fear of crime tends to increase with age. This led scholars to assume the existence of the so-called victimisation-fear paradox: older people, especially older women, tend to be more afraid of crime when they are less likely to become crime victims, and therefore this fear is regarded as irrational (Henson & Reyns, 2015; Yin, 1980). However, recent studies on fear of crime in late life challenge these paradox assumptions and open space for a debate on whether fear of crime experienced by older adults is irrational and whether a victimisation-fear paradox exists at all. As a part of my doctoral project, I would like to address the first part of the paradox statement by exploring the characteristics of fear of crime experienced by older adults in Sweden and investigating whether this fear is associated with problematic indicators of physical and mental health while ageing. It is important to start with defining fear of crime and describing its different aspects. Although there seems to be no universally accepted fear of crime definition, often fear of crime is referred to as an emotional response to a threat associated with crime or crime symbols (Henson & Reyns, 2015). Fear of crime is thus a subjective experience of an individual that

NADEZHDA GOLOVCHANOVA Fear of crime in advanced age 9 Ageing in a changing society I 51 may or may not reflect the actual crime rates in the particular neighbourhood or society in which he or she lives. Different approaches to formulating the questions on fear of crime yield contrasting results regarding the frequency with which this fear is experienced, especially when it comes to crime surveys. LaGrange and Ferraro (1987) refer to two large surveys previously carried out in the USA. Both aimed to study the extent to which fear of crime is a significant problem for older adults. In one study that inquired about the fear of crime by asking closed questions (i.e. with fear of crime being one of several response alter- natives), 23% of older people admitted that fear of crime is a serious personal problem for them. In another study, in which open questions were formulated (i.e. responders had to indicate their fears themselves, without response options), only 1% of older adults mentioned fear of crime as a serious personal obstacle. Although these survey results were published decades ago, I believe that some lessons from these studies are still important today. Especially when studying people’s subjective experience, study results and conclusions are likely to be shaped by the way the questions are formulated.

Theoretical framework: Gerontology insights for criminology The problem of insufficient theoretical background has been widely discussed in the general fear of crime research field (Bilsky, 2017; De Donder, Buffel, Verte, Dury & De Witte, 2009; Yin, 1980): without reference to relevant theories, many research findings may lack explanation. An example of a theoretical framework applied to fear of crime and unsafety experience research are rationalist and symbolic paradigms described by Elchardus, De Groof, and Smits (2008). In short, a rationalist paradigm assumes that people are generally rational in experiencing fear of crime and estimating risks, therefore previous victimisation and vulnerability are among the key research constructs (Elchardus et al., 2008). Within this paradigm’s reasoning, individuals are expected to display levels of feeling unsafe that are adequate to perceived risks of victimisation. A symbolic paradigm, however, relies on a broader explanation of fear of crime experience: experienced vulnerability can originate from various reasons beyond those related to crime and its risk. Thus, an additional spectrum of factors such as, for instance, health or financial problems are included in research as potentially contributing to unsafety experience (Elchardus et al., 2008). A researcher working within a symbolic paradigm is more likely to view unsafety feelings as a highly subjective experience and will explore a wider

10 NADEZHDA GOLOVCHANOVA Fear of crime in advanced age 52 I Ageing in a changing society range of factors that could be linked to feeling vulnerable than those directly and rationally associated with crime risk or crime experience. When approaching fear of crime in later life, in addition to criminologi- cal perspective, gerontological knowledge inevitably needs to be consulted (Greve, 1998). An attempt to present an ageing-specific yet general across- the-disciplines paradigm was recently made by Ferraro (2018) in proposing the gerontological imagination paradigm. Centred around six axioms, this paradigm encompasses a broad spectrum of methodological and thematic concepts that enrich gerontological research. The gerontological imagination paradigm relies on an understanding of human experience as subjective, unique and not easily explained by a rational approach (in this sense, gerontological imagination is in line with the symbolic paradigm assumptions mentioned above). Specifically, gerontological imagination devotes significant attention to the heterogeneity approach. When applied to ageing, the heterogeneity approach allows us to view older people as a diverse group of individuals with substantial variability in health, personality, social involvement, experienced past events and other crucial life aspects (Ferraro, 2018). Adding another layer of fear of crime experience to heterogeneity, or diversity, of individuals in advanced age enables us to move away from conceptualization of the older adults as a homogeneous fearful group (as demonstrated by correlational studies in which older adults are shown to experience more fear of crime compared to younger adults (for a review, see Ziegler & Mitchell, 2003). Recent research on fear of crime in older adult populations carried out using quantitative (Hanslmaier, Peter, & Kaiser, 2018), qualitative (Rypi, 2012) and experimental (Ziegler & Mitchell, 2003) methods point to various heterogeneity aspects in unsafety experience among older adults. In other words, in the general population of older adults, there are those who feel safe and those who feel unsafe; unsafety feelings may vary depending on contexts; those who feel unsafe may feel that way for various reasons; and those who feel unsafe may or may not be distressed because of it. Such a conceptualisation of unsafety experience theoretically links to the symbolic paradigm assumptions that consider a broad heterogeneous spectrum of factors to be investigated as potentially related to fear of crime and unsafety experience.

Psychology: When does fear of crime become problematic? Since fear of crime is often discussed as a significant societal problem, search for preventing or reducing this fear is often aimed for. Recent statistics

NADEZHDA GOLOVCHANOVA Fear of crime in advanced age 11 Ageing in a changing society I 53 show, for instance, that in Sweden, 10% of older adults aged 65–74 and 13% of those aged 75–84 admit avoiding going out in the evening for reasons of unsafety (BRÅ, 2018). However, if crime is a serious threat to individuals and/or their property, isn’t it natural to be fearful of such a threat, at least in certain contexts or to a certain extent, one could wonder? Being a psychologist, I see another important aspect of fear of crime research in identifying when and for whom fear of crime becomes problematic in everyday life. Although previous research shows that adults and older adults who are more fearful of crime tend to report more psychological distress (Beaulieu, Leclerc & Dubé, 2004; Pearson & Breetzke, 2014; Stafford, Chandola & Marmot, 2007), if we keep looking for differences within the general group of older adults, more nuances are likely to appear. One of the strategies to address these nuances is to continue the line of research initiated by Jackson and Gray (2010), which generally distinguishes between functional and dysfunctional fear of crime. Functional fear helps an individual to maintain control over perceived threats and does not affect the quality of life, whereas dysfunctional fear leads to quality of life reduction. In line with this, older adults who are fearful of crime can be seen as a diverse group regarding their psychological well-being. In other words, for some older adults fear of crime can become a healthy vigilance that keeps them alert in their daily life and, if necessary, stimulates them to take healthy precautions against crime (e.g., security alarms, avoiding certain areas, etc.) and does not prevent them from having an active and fulfilling life. On the other hand, for some other older people fear of crime may be a painful emotional burden that restricts them from being involved in activities outside of home and becomes one of the factors preventing them from fully enjoying life. Consequently, the research objective is to identify these differences among those fearing crime in order to be able to create meaningful interventions for the most vulnerable in this regard older adults.

Conclusion Promoting safety and decreasing unsafety is an important overall goal of criminology. It is important to remember that, for instance, if 10% of the respondents aged 65-74 report fear of crime and behaviour related to it, it also means that the remaining 90% of the respondents in the same age range are not significantly afraid of crime. The dominance of the victim discourse in relation to older adults is more and more questioned, and the discourse of agency and being competent actors (Rypi, 2012) (as demonstrated by the story that opened this chapter) deserves more research attention.

12 NADEZHDA GOLOVCHANOVA Fear of crime in advanced age 54 I Ageing in a changing society About the author: Nadezhda Golovchanova Nadezhda Golovchanova is a doctoral student in psychology within the Newbreed Successful Ageing doctoral programme at Örebro University. She previously worked in Yaroslavl (Russia) at Demidov Yaroslavl State Uni- versity as a university lecturer and a project coordinator; as a school psychologist; and as a medical psychologist at a regional residential care facility for older adults. Her main research interests include psychology of ageing, existential dimension of human life, and psychotherapeutic process. Her current doctoral project concentrates on feelings of unsafety and fear of crime in advanced age.

NADEZHDA GOLOVCHANOVA Fear of crime in advanced age 13 Ageing in a changing society I 55 References Beaulieu, M., Leclerc, N., & Dubé, M. (2004). Chapter 8 fear of crime among the elderly: An analysis of mental health issues. Journal of Gerontological Social Work, 40(4), 121–138. doi: 10.1300/J083v40n04_09 Bilsky, W. (2017). Fear of crime, personal safety and well-being: A common frame of reference. Universitäts- und Landesbibliothek Münster. BRÅ (The Swedish National Council for Crime Prevention) Brott mot äldre. Om utsatthet och otrygghet. Report, 2018 https://www.bra.se/down- load/18.7c546b5f1628bc786c9752/1523529971976/2018_7_Brott_m ot_aldre.pdf De Donder, L., Buffel, T., Verte, D., Dury, S., & De Witte, N. (2009). Feelings of insecurity in context: Theoretical perspectives for studying fear of crime in late life. International Journal of Economics and Finance Studies, 1(1), 1–20. Elchardus, M., De Groof, S., & Smits, W. (2008). Rational fear or represented malaise: A crucial test of two paradigms explaining fear of crime. Sociological Perspectives, 51(3), 453–471. Doi: 10.1525/sop.2008.51.3.453 Ferraro, K. F. (2018). The gerontological imagination: An integrative paradigm of aging. Oxford: University Press. Gray, E., Jackson, J., & Farrall, S. (2011). Feelings and functions in the fear of crime: Applying a new approach to victimization insecurity. The British Journal of Criminology, 51(1), 75–94. doi: 10.1093/bjc/azq066 Greve, W. (1998). Fear of crime among the elderly: Foresight, not fright. International Review of Victimology, 5(3-4), 277–309. https://doi.org/10.1177/026975809800500405 Hanslmaier, M., Peter, A., & Kaiser, B. (2018). Vulnerability and fear of crime among elderly citizens: What roles do neighborhood and health play? Journal of Housing and the Built Environment, 33(4), 575–590.

14 NADEZHDA GOLOVCHANOVA Fear of crime in advanced age 56 I Ageing in a changing society Henson, B., & Reyns, B. W. (2015). The only thing we have to fear is fear itself… and crime: The current state of the fear of crime literature and where it should go next. Sociology Compass, 9(2), 91–103. doi: 10.1111/soc4.12240 Jackson, J., & Gray, E. (2010). Functional fear and public insecurities about crime. The British Journal of Criminology, 50(1), 1–22. doi:10.1093/bjc/azp059 LaGrange, R. L. & Ferraro, K. F. (1987). The elderly’s fear of crime. Research on Aging, 9(3), 372–391. Pearson, A. L., & Breetzke, G. D. (2014). The association between the fear of crime, and mental and physical wellbeing in New Zealand. Social Indicators Research, 119(1), 281294. doi: 10.1007/s11205-013-0489-2 Rypi, A. (2012). Not afraid at all? Dominant and alternative interpretative repertoires in discourses of the elderly on fear of crime. Journal of Scandinavian Studies in Criminology and Crime Prevention, 13(2), 166–180. doi: 10.1080/14043858.2012.729375 Stafford, M., Chandola, T., & Marmot, M. (2007). Association between fear of crime and mental health and physical functioning. American Journal of Public Health, 97(11), 2076–2081. doi: 10.2105/AJPH.2006.097154 Yin, P. P. (1980). Fear of crime among the elderly: Some issues and suggestions. Social Problems, 27(4), 492–504. Ziegler, R., & Mitchell, D. B. (2003). Aging and fear of crime: An experimental approach to an apparent paradox. Experimental aging research, 29(2), 173–187. doi: 10.1080/03610730303716

NADEZHDA GOLOVCHANOVA Fear of crime in advanced age 15 Ageing in a changing society I 57

Ageing after a life of criminal behaviour Carmen Solares

In this chapter, the reader will be guided through a personal and scientific journey from broad research questions about ageing to a concrete PhD research aim. Different research limitations and research approaches to the study of ageing are discussed in the first two sections. Then, the chapter focuses on the study of older offenders, or ageing after a life of criminal behaviour. Finally, I present the general aim of my PhD project.

What is ageing? When thinking about the study of ageing, some researchers tend to approach the topic from the perspective of an average and healthy individual who is growing older and entering a new life stage where new psychological, social and biological challenges may be faced. For instance, let’s look at the case of neurosciences and neuropsychology. Both research areas are very interdisciplinary fields that try to describe behavioural, emotional, biological and social changes in ageing. Scholars researching ageing within these disciplines have devoted large amounts of economic and intellectual resources to designing studies and developing theories that explain non- pathological and pathological ageing processes. However, the main assumption behind these theories is that individuals growing older have been healthy and ‘normal’ individuals along their whole lifespan. So, when we read about early neurological, cognitive and behavioural signs of dementia, we are usually learning about what is expected to be early signs of dementia for an adult after a specific chronological age (65–70 years old) who has not had significant health, socio-demographic and psychosocial lifespan problems. It is true that researchers have provided a bunch of risk and protective factors that are associated with non-pathological and pathological ageing such as educational level, unhealthy habits, genetic factors or physical activity, among many others. Nevertheless, most of knowledge we have about the impact of these factors on ageing is within the context of a ‘normal and healthy’ adult who is getting older and may or may not start showing some of these early signs. This approach to the study of ageing is completely ok, but it may not be enough to describe comprehensively different ageing trajectories, just as Piaget’s initial theories about cognitive developmental

1 Ageing in a changing society I 59 stages are not sufficient to explain learning and social development trajectories during childhood. Furthermore, in our scientific and ‘Gaussian’ obsession to explain what is normal and what is abnormal, researchers focus on and settle for exploring what is expected for those who fall under the 95% area of a normal distributed population curve. However, real life goes beyond any statistical model because a small percentage, such as 5%, may represent thousands of individuals for whom the available scientific theories are not fully explaining the way they age. A few years ago, just before starting my PhD studies, I was working as a neuropsychologist at the psychiatric unit of a hospital far away from Swe- den. This was a quite uncommon situation because neuropsychologists are usually located in neurological departments where the patients are referred to assess their cognitive abilities after a brain lesion or because of an incip- ient neurodegenerative disorder. Interestingly, at the psychiatric unit we received patients with similar presenting complaints (i.e. memory problems, bizarre or disinhibited behaviours), but when we dug into their previous clinical history, we realised that most of them had been dealing with psychiatric, psychological and even cognitive problems during their entire life. How do these patients fit into the dichotomy paradigm of non-pathological and pathological ageing? What is ageing for an individual who has been challenged by psychiatric disorders during his/her life? This was an eye-opening experience. How are previous clinical, psychological, biological and social factors moderating and mediating ageing processes? Can research draw a theoretical unique line splitting ageing between pathology and normality? The answer is probably no, it cannot. The reality is much more complex than that.

Understanding ageing from a longitudinal perspective. A starting point is to embrace the idea that ‘ageing’ and ‘development’ should be considered indivisible terms because both terms refer to an individual who is changing over time. Even though ageing tends to be associated with the biological, social and psychological changes that occur after a specific chronological age (usually 65 years old), it is actually what is happening from early embryological stages to death. We can refer to different theoretical and empirical models to illustrate this (for a complete review, see Spini, Jopp, Pin & Stringhini, 2016). The critical period model assumes that there are sensitive periods during childhood where contextual and environ-

2 60 I Ageing in a changing society mental factors influence biological parameters that will affect later developmental outcomes. The notion that critical periods exist is not free of controversy, but it is evident in how early cognitive stimulation and social interaction in toddlers impact the acquisition of abilities such as language later in childhood. Other models that may help in understanding ageing as a longitudinal process are the theories that postulate that adverse experiences along the lifespan contribute to the accumulation of disadvantage in later life stages. For instance, growing up in a poorly structured family with a low socio-economic level together with peers’ rejection and academic failure during childhood may foster the developmental of antisocial behaviours and drug use that may increase the likelihood that a person may get involved in criminal activities during adolescence and early adulthood. This cumulative continuity of disadvantages will contribute not just to the perpetuation of criminal behaviours later in adulthood but also to the development of mental health problems (e.g. personality disorders), physical health problems (e.g. cardiovascular diseases) and psycho-social problems (e.g. unemploy- ment and alienation feelings) while ageing. The accumulation of disadvantages is quite related to the ideas of the Pathway Model, another theoretical model that highlights the link between early-life experiences and ageing. The novelty of this model is its focus on how the combination of different favourable or adverse circumstances along the lifespan interact among each other and shape a life pathway, which will lead to positive or negative outcomes in ageing. Perhaps this model is much less determinist than the other two models because it emphasises the modification effect of social contextual factors in an individual’s life pathway, giving a secondary role to the influence of individual biological features on ageing. Thus, if we know that our experiences during different moments in life shape the way we grow up and age, if we know that our biological and social contexts shape life trajectories, researchers must assume that ageing is part of a continuum and they must consider the contribution of previous life factors to the study of ageing. Therefore, if we assume that ageing is how an individual develops along his/her entire lifespan, it will become obvious to include lifespan and longitudinal perspectives in our research de- signs. This will enrich our understanding of ageing. We will be able to describe different ageing trajectories and go beyond the dichotomy of normal versus pathological or successful versus unsuccessful ageing.

3 Ageing in a changing society I 61 The case of older offenders I have already mentioned the kind of ‘epiphany’ I had working at the psychiatric unit of that hospital, in that far-away country, where the patients I met left me with more open questions about ageing than answers I had for their presenting complaints. I became more interested in understanding what research said about what ageing means for people who have been challenged by mental health problems and adverse social situations throughout their lives (see Newton-Howes, Clark & Chanen, 2015). Suddenly, I stum- bled upon a very interesting group of people: older offenders. Older offenders are a potentially vulnerable population group for whom ageing processes cannot be understood without taking into account psychological, sociological, biological and criminal life-course variables. Among the older offenders, those ageing inside prison are a fast-growing group and they already represent between 10% and 19% of the prison population in different Western countries (Di Lorito, V llm & Dening, 2018). In fact, according to the Swedish National Council for Crime Prevention (BRÅ), almost 17% of the offenders admitted to prisonӧ in 2018 in Sweden were 50 years old or above. Criminal behaviour in ageing and long-term patterns of deviant behaviour along the lifespan are associated with different socio-demographic, socio-economic, psychiatric health and psychological risk factors that may influence the mental, neurocognitive and physical health as well as the psychosocial adjustment of older offenders (Corovic, Andershed, Colins & An- dershed, 2017). Moreover, the accumulation of disadvantages along the lifespan, together with the psychological stressors associated with prison life and/or with unadjusted behavioural patterns after release, contribute to ac- celerating the onset of ageing-related problems (Ginn, 2012; O’Hara et al., 2016; Sampson & Laub, 2001). Actually, offenders are usually considered older adults when they are 50–55 years old (Ginn, 2012; Fazel, Hope, O’Donnell & Jacoby, 2004). The relation between criminal behaviour, mental health and psychosocial adjustment has been widely studied before (Fazel & Seewald, 2012; Fazel, Hayes, Bartellas, Clerici & Trestman, 2016). Researchers have been mainly keen on risk and protective factors and the adverse consequences of the development of criminal behaviours during childhood, adolescence and early adulthood. There is a lot of research coming from psychology, criminology, social work and even health science that has tried to answer complex questions such as why an individual violates rules despite the social and juridical

4 62 I Ageing in a changing society punishments, why an individual desists from or persists in his criminal ca- reer, or the link and the impact of criminal behaviour on health, among other questions. However, despite the increasing number of offenders ageing behind bars, and although older offenders represent a unique opportunity to study different ageing trajectories, little research has been done with this population group so far.

The general aim of my research Can research understand what ageing means without taking into account previous life experiences? Maybe this is the key question that has guided me throughout this personal and professional research journey from my time as a clinical neuropsychologist to my interest in older offenders. Thus, the aim of my PhD research is to study the mental and physical health and the psychosocial needs of older offenders, and to understand how these needs are influenced by different lifespan variables. In order to learn more about the health of older offenders, in the first study of my PhD, we have performed a systematic review and meta-analysis to provide a comprehensive description of the mental and physical health problems of older offenders. Our results highlight the gap of knowledge and the lack of studies focusing on this population. We show that older offenders present a complex and diverse profile of mental and physical health problems. Among the most common health problems are substance and alcohol abuse, depression, personality disorders, hypertension, arthritis, hep- atitis C and cardiovascular disorders with prevalence rates ranging between the 18% and 37% of older offenders. These results confirm previous evidence that suggested an elevated burden of diseases in older prisoners and offenders. In addition, we also provide some evidence showing that the prevalence of different physical health outcomes is higher in older prisoners and offenders in comparison with older adults in the general population. After describing the health problems of older offenders, I am keen on investigating which psychiatric and psychological (e.g. substance abuse, mental health problems), physical health (e.g. cardiovascular problems), criminal (e.g., type of crime, length of the sentence) and socio-demographic (e.g. educational level, family structure) factors along the lifespan of offenders contribute to cumulative health and social disadvantages in their ageing. During my PhD, I will explore how these variables are associated with specific health outcomes, such as dementia or depression, among other psychiatric and physical health problems.

5 Ageing in a changing society I 63 My research will contribute to extending the conception of ageing as a complex, diverse and longitudinal process. I hope that my results will shed some light on how previous life experiences shape medical, psychological and social outcomes in ageing. Finally, I would like my results to help in the creation of accurate and preventive intervention programmes and in the application of concrete actions such as adapting physical and social environments of prisons for the needs of this special ageing population.

About the author: Carmen Solares. Carmen is a doctoral student in the EU-funded PhD program NEWBREED within the thematic area of Successful Ageing and psychosocial adjustment. Her academic and professional background is in Clinical Neuropsychology and Cognitive Neurosciences. Her research interests are older adults’ functional and cognitive impairment after a lifespan of psychiatric disorders; psychosocial adjustment during ageing; neurocognitive and psychopatho- logical disorders; as well as ageing processes after a life of criminal behaviour.

6 64 I Ageing in a changing society References Brottsförebyggande rådet (BRÅ), (2018). The Prison and Probation Service. Retrieved from: https://www.bra.se/bra-in-english/home/crime- and-statistics/crime-statistics/the-prison-and-probation-service.html Corovic, J., Andershed, A. K., Colins, O. F., & Andershed, H. (2017). Risk factors and adulthood adjustment out-comes for different pathways of crime. In A. Blokland & V. van der Geest (Eds.), The Routledge International Handbook of Life-Course Criminology, (pp. 220–244). New York: Routledge. Di Lorito, C., V llm, B., & Dening, T. (2018). Psychiatric disorders among older prisoners: A systematic review and comparison study against olderӧ people in the community. Aging & Mental Health, 22(1), 1–10. Doi: 10.1080/13607863.2017.1286453 Fazel, S., Hope, T., O’Donnell, I., & Jacoby, R. (2004). Unmet treatment needs of older prisoners: A primary care survey. Age and Ageing, 33(4), 396–398. Doi: 10.1093/ageing/afh113 Fazel, S., Hayes, A. J., Bartellas, K., Clerici, M., & Trestman, R. (2016). Mental health of prisoners: Prevalence, adverse outcomes, and interventions. The Lancet Psychiatry, 3(9), 871–881. Doi: 10.1016/S2215- 0366(16)30142-0 Fazel, S., & Seewald, K. (2012). Severe mental illness in 33 588 prisoners worldwide: Systematic review and meta-regression analysis. The British Journal of Psychiatry, 200(5), 364–373. Doi: 10.1192/bjp.bp.111.096370 Ginn, S. (2012). Elderly prisoners. BMJ: British Medical Journal (Online), 345. Doi: 10.1136/bmj.e6263 Newton-Howes, G., Clark, L. A., & Chanen, A. (2015). Personality disorder across the life course. The Lancet, 385(9969), 727–734. Doi: 10.1016/S0140-6736(14)61283-6 O’Hara, K., Forsyth, K., Webb, R., Senior, J., Hayes, A. J., Challis, D., Fazel, S. & Shaw, J. (2016). Links between depressive symptoms and unmet health and social care needs among older prisoners. Age and Ageing, 45(1), 158–163. Doi: 10.1093/ageing/afv171

7 Ageing in a changing society I 65 Sampson, R. J., & Laub, J. H. (2001). A life-course theory of cumulative disadvantage and the stability of delinquency. In A. Piquero & P. Ma- zerolle (Eds.), Life-course criminology: Contemporary and classic readings (146–169). Toronto: Wadsworth. Spini, D., Jopp, D.S., Pin, S. & Stringhini, S. (2016). The multiplicity of aging: Lessons for theory and conceptual development from longitudinal studies. In V.L. Bengtson & R.A. Settersten (Eds.), Handbook of theories of aging (pp. 669–690). New York: Springer Publishing Com- pany.

8 66 I Ageing in a changing society Ageing with chronic pain: A life course perspective Christiana Owiredua

Overview of ageing and chronic pain in the population From all indicators, people are living longer now than ever before. This has been a central theme in most discussions in the past couple of decades apart from the fact that it was previously regarded as a topic in Western developed countries. Nonetheless, it is now known from various indicators that this demographic change is also happening in developing countries. In fact, it is projected that the current population regarded as ‘young’ in most developing countries will see a sharp demographic change within a very short time span compared with the transitioning period in developed countries. This has led to a series of discussions, both in the research arena and at the policy level, on the opportunities as well the challenges that this demographic change comes with. One area that has been on the forefront of such discussions regarding the ageing population has been in the domain of health. The subject matter of health and ageing has been broad but then again, such is expected! This is because, the concept of health and ageing are both interdisciplinary drawing from many fields and disciplines in their conceptualisation and formulation. As such, the merging of such fields results in a vast area of study. The discussions, although broad, have centred around but not limited to questions such as: How are people ageing in terms of their health status? Which health conditions or diseases are on the rise? What factors lead to or increase the risk of such health conditions? What are the typical ages for such conditions to manifest? How can such diseases best be managed and/or prevented? What disabilities and/or functioning loss are associated with such diseases? What are the societal and policy implication of such health-related issues? Although the questions have been endless, one area that has received much attention is in the scope of chronic non-communicable diseases. Chronic non-communicable diseases are diseases that have prolonged course and do not occur due to an infectious process. Hence, they are ‘not transmissible’, do not resolve on their own and a complete remedy is rarely attained (Center for Disease Control, 2013). Included among such conditions are diabetes, cardiovascular diseases, cancer, back and neck pain and many more. It is known that chronic non-communicable diseases are on the rise and at par with the ageing population (World Health Organization,

9 Ageing in a changing society I 67 2018). Not only that, they are also named among the leading cause of deaths in the adult population, especially among persons aged 65 and above in many countries. Further, a look at the leading conditions or diseases associated with ‘years lived with disability’ tells us that such chronic non- communicable diseases make up a great number of them, increasingly be- coming burdensome in the ageing population. ‘Years lived with disability’ refers to the conditions, illness or injury that lead to or come with significant functional loss in the lifespan of those affected. It is used in determining ‘years lost due to disability’, an indicator of the global, regional and national burden of diseases. Below, in Figure 1, a visual overview of estimating ‘years lived with disability’ is presented.

Figure 1: Visual overview of estimating Years Lived with Disability (YLD). Source: Public Health England (2015). Reproduced under Open Government Licence by Shah, Hagell and Cheung (2019).

Chronic non-communicable diseases have accordingly been seen as vital contributors to the global burden of diseases as they are key players contributing to a shortened lifespan and significant loss of or limitation in functioning. A functional limitation can be described as a restriction in an individual’s ability to engage in various actions and/or activities in ways that are within the range regarded as ‘normal’ due to an impairment (Blakeney, Rosenberg, Rosenberg & Fauerbach, 2007). Although most chronic non- communicable diseases result in significant impairment in functioning, chronic pain conditions, specifically musculoskeletal disorders, continue to

10 68 I Ageing in a changing society be a leading cause of disability worldwide. Chronic pain is defined by the International Association for the Study of Pain (IASP) as pain that persists past normal healing time (Treede et al, 2015) and lasts or recurs for more than 3 to 6 months (Merskey & Bogduk, 1994). Chronic pain conditions are over-represented in the leading causes of years lived with disability in many age groups (Vos et al., 2016). The table below presents the top 10 leading cause of ‘years lived with disability’ (numbered from top 1 to 10) in the different age groups. This list is created out of 310 diseases and injuries globally. Further, the colour in in each box indicate an estimate in the rate of change between 2005 and 2015.

Table 1: The Ten Leading Causes of Age-Specific Years Lived with Disability in 2015. Source: Vos et al. (2016).

11 Ageing in a changing society I 69 From Table 1, it can be observed that chronic pain conditions (mainly neck pain, back pain, migraine and other musculoskeletal disorders) are over represented in the list. It is intriguing that it is even present as early as ages 10- 14 and persist as late as ages 80 and above. By age 25, back and neck pain become the top leading cause of ‘years lived with disability’ and persist over the adult life span. Actually, it is projected that about 20% of the world’s population are living with chronic pain (Goldberg & McGee, 2011). From this it can be realised that, the age at which chronic pain problems begin varies for different people. That is, different groups of people are living with chronic pain at different points in their life and for varying durations. Hence, chronic pain can thus be seen as a lifespan problem with different life trajectories and situations regarding ageing within this population.

Placing chronic pain research in an ageing perspective Living with chronic pain means ageing with pain, as ageing is defined not as an assumption of a particular age but the various processes, changes (gains and losses) and adaptations that people undergo from conception to death. From a life course ageing perspective, these processes and mechanisms are not based solely on the individual’s biological and psychological resources but also on the broader societal contexts within which people live. Further, the life course view on ageing does not see any of the stages across the lifespan as more important than any others. Nonetheless, for the sake of accumulation over time, the early years in the life course are given priority, especially in health domains for prevention purposes. One theory of ageing that identify with the life course perspective and the concept of accumulation is the cumulative inequality theory (Ferraro & Shippee, 2009). The theory incorporates tenets of cumulative (dis)advantage into ageing research spanning across individuals, cohorts and populations. It identifies that ageing is a lifelong process with the accumulation of (dis)advantages seen as the forces that differentiate a cohort over time (Ferraro & Shippee, 2009). It explains that people exposed to early disadvantages (negative events or conditions) are likely to amass even more disadvantages over their life because the negative experience puts them at risk for more future negative events or conditions. On the other hand, those who are exposed to advantages (favourable events or conditions) are likely to gain even more advantages as the past advantages put them in a good position or closer to other advantages in the future. Further, the cumulative inequality theory emphasizes the essence of time and duration of exposure (negative or positive conditions) in estimating the dynamics of event impact

12 70 I Ageing in a changing society as well as targeting interventions. That is to say, different developmental periods or stages of being exposed to an unfavourable event with varying duration can also have different impact domains and/or magnitude, result- ing in a different life course for those affected. Also, it indicates that the individual’s own view of their life situation can have a significant impact on their future life course through the decisions and options they perceive to be available. From this theory, the life stage of onset and duration of exposure of chronic pain can thus be seen as important in understanding the dynamics in the subgroups of people living chronic pain. That is, the age of chronic pain onset and its associated functional limitations can vary the psychosocial experience through the different life course accumulation of risks and expectancies. As such, persons with different life trajectories of chronic pain onset are likely to have different life situations, risks and experiences. Although studies on managing chronic pain are ongoing, until recently, the approaches adopted gave the impression of homogeneity in this population. The idea of applying a life course perspective has recently been raised to allow for understanding the processes over the life course rather than distinct stages that dominate the field (Walco, Krane, Schmader & Weiner, 2016). Further, the majority of the few works which apply a life course perspective to chronic pain are epidemiological studies exploring the prevalence and incidence of chronic pain in the population. The works within the psychosocial aspects of chronic pain have mainly centred on which factors are involved in chronic pain development (Hartvigsen et al., 2004; Blyth et al., 2007). However, the reverse is also important. That is, what are the life trajectories of people living with chronic pain in a life course perspective with regards to their psychosocial outcomes?

The way forward The focus of this research therefore approach chronic pain from a life course perspective after pain has initiated. It seek to explore the different life trajectories of people ageing with chronic pain at different age of onset specifically; their psychosocial functioning, their life course access to and level of participation (work and income) and what it mean to this group to be ageing.

13 Ageing in a changing society I 71

About the author: Christiana Owiredua Christiana Owiredua is a PhD (Psychology) student within the research school NEWBREED at Örebro University. She is affiliated to the Center for Health and Medical Psychology (CHAMP) within the Psychology Depart- ment. Her academic and professional background is in clinical health psychology with research interests ranging across ageing (psychosocial adjustment and adaptation), mental health, (chronic) non-communicable diseases and implementation science.

72 I Ageing in a changing society References Blakeney, P. E., Rosenberg, L., Rosenberg, M., & Fauerbach, J. A. (2007). Psychosocial recovery and reintegration of patients with burn injuries. In D. A. Herndon (Ed.), Total burn care (pp. 829-843). Elsevier Inc. Blyth, F. M., Macfarlane, G. J., & Nicholas, M. K. (2007). The contribution of psychosocial factors to the development of chronic pain: the key to better outcomes for patients? Pain, 129(1), 8-11. Center for Disease Control (2013). Overview of Non communicable Dis- eases and Related Risk Factors https://www.cdc.gov/glob- alhealth/healthprotection/fetp/training_modules/new-8/Overview-of- NCDs_PPT_QA-RevCom_09112013.pdf Ferraro, K. F., & Shippee, T. P. (2009). Aging and cumulative inequality: How does inequality get under the skin? The Gerontologist, 49(3), 333-343. Goldberg, D. S., & McGee, S. J. (2011). Pain as a global public health priority. BMC Public Health, 11(1), 770. Hartvigsen, J., Lings, S., Leboeuf-Yde, C., & Bakketeig, L. (2004). Psy- chosocial factors at work in relation to low back pain and consequences of low back pain; a systematic, critical review of prospective cohort studies. Occupational and environmental medicine, 61(1), e2- e2. Merskey, H., & Bogduk, N. (1994). Classification of chronic pain, IASP Task Force on Taxonomy. Seattle, WA: International Association for the Study of Pain Press .Also available online at www. iasp-painorg Treede, R. D., Rief, W., Barke, A., Aziz, Q., Bennett, M. I., Benoliel, R. & Giamberardino, M. A. (2015). A classification of chronic pain for ICD-11. Pain, 156(6), 1003. Vos, T., Allen, C., Arora, M., Barber, R. M., Bhutta, Z. A., Brown, … & Coggeshall, M. (2016). Global, regional, and national incidence, prevalence, and years lived with disability for 310 diseases and injuries, 1990–2015: A systematic analysis for the Global Burden of Disease Study 2015. The Lancet, 388(10053), 1545-1602.

15 Ageing in a changing society I 73 Walco, G. A., Krane, E. J., Schmader, K. E., & Weiner, D. K. (2016). Ap- plying a lifespan developmental perspective to chronic pain: Pediatrics to geriatrics. The Journal of Pain, 17(9), T108-T117. World Health Organization. (2018). WHO global coordination mecha- nism on the prevention and control of noncommunicable diseases: Fi- nal report: WHO GCM (No. WHO/NMH/NMA/GCM/18.12). World Health Organization.

16 74 I Ageing in a changing society CHAPTER 3 Ageing and the fourth industrial revolution

Habit recognition in smart homes for people with dementia Gibson Chimamiwa

Introduction As the ageing population continues to grow, so does the number of people living with dementia (Prince et al., 2015). The growth in the population of people living with dementia, coupled with societal and economic costs es- calates the demand for smart home solutions (Amiribesheli & Bouchachia, 2018). Smart home technologies enable the remote monitoring of users’ activities, better enabling them to remain in their preferred environments. However, dementia patients are bound to change their habits as the disease progresses along the different stages. A habit is one activity or a set of activities that are performed in a repeated and regular way (Thompson, 2014). Therefore, in order to deal with the challenges associated with changing habits, smart home technologies need to be extended to human habit recognition. The approach helps with early detection of stage transition which may be reflected in the changes of habits. In this way, caregivers are in a position to provide interventions early, which could slow the fast deteriora- tion of patients to late-stage dementia.

Dementia Dementia is a progressive decline in cognitive memory and functional loss and is usually associated with ageing (Reisberg, Ferris, de Leon, & Crook, 1982). It progresses in seven developmental stages from early-stage to late- stage dementia. Due to the complexity of the disease, it is difficult to detect the onset of dementia. In the majority of cases patients and family caregivers may simply attribute early signs of dementia to ageing. As a result, dementia patients are admitted to health-care centres when the disease has advanced to middle or late stages when little can be done to mitigate further deterio- ration. Therefore, a major challenge in caring for dementia patients is early recognition and the possibility to slow the fast progression to late-stage transition of patients (Woods et al., 2003). Furthermore, each stage of dementia is characterised by a number of symptoms which worsen as the disease progresses. The symptoms include forgetfulness, loss of short-term memory, wandering, repeating simple behaviours, loss of speech and loss of psychomotor skills (see Figure 1).

GIBSON CHIMAMIWA Habit recognition in smart homes for people with de- 9 mentia Ageing in a changing society I 77

Figure 1. Dementia stages

Smart home systems for dementia have mainly focused on activity recognition in order to monitor the daily activities of the patient (Tiberghien, Mokhtari, Aloulou, & Biswas, 2012; Lin, Zhao, & Wang, 2018). Using different sensors deployed in home environments, it is possible to capture a variety of occupant activities such as sleeping, eating, cooking, resting, or physical activity. Sensors are mainly classified into three categories, namely,

10 GIBSON CHIMAMIWA Habit recognition in smart homes for people with dementia 78 I Ageing in a changing society environmental sensors, wearable sensors and video-based sensors. Environ- mental sensors such as motion sensors are used to detect the movement of people in a particular location. Wearable sensors include accelerometers to measure the velocity of movements or heart-rate sensors to measure the heart-beat. Video-based sensors include cameras to monitor the type of activity an individual is involved in at any given instance. The use of sensor systems has been applied in several domains including health-care, sports, and security and surveillance. Each application area uti- lises a set of preferred sensor devices that are relevant for the specific task at hand. In particular video cameras are more prevalent in security and surveillance domain while physiological sensors such as ECG to measure heart- rate are more applicable in the medical and sporting domains. Other issues that determine the applicability of sensor devices are ease of use and privacy. In particular, due to privacy concerns, the use of video cameras to monitor the activities of individuals in their home environments or patients in health care centres is considered intrusive. At the same time attaching wearable sensors on dementia patients may cause them a lot of discomfort and anxiety. Activity recognition is classified into knowledge-driven and data-driven approaches. The activities are recognised either by extracting patterns from large volumes of data (data-driven approach) or by capturing contextual information based on prior domain knowledge and then applying reasoning based on the contextual information (knowledge-driven approach). Data-driven approaches are more reliable in dealing with large amounts of data and therefore scale better. Due to this scalability, they promise to offer a solution for the habit recognition task, which depends on long-term observation. However, data-driven solutions depend on the availability of large quantities of good data. In other words, it takes time to learn the behaviours of patients. On the other hand, data-driven approaches are not generalisable enough and hence are not reusable when the patient or the environment changes. Knowledge-driven approaches rely on the availability of domain experts and make it straightforward to include contextual information or general medical knowledge for specific situations in decision-making processes. However, handling uncertainty using knowledge-driven methods is not ef- ficient. In practice, it is intractable to predict and model all the possible ways in which each patient performs activities. The way in which one user pre- pares a meal are different from another user. Therefore, it is not feasible to

GIBSON CHIMAMIWA Habit recognition in smart homes for people with de- 11 mentia Ageing in a changing society I 79 model all the behaviours of each individual patient in terms of rules in the knowledge model. To avoid the difficulty of relying on a human expert to model all details of how individuals perform activities, the focus is shifted towards ’letting the data talk to us’. In particular, using statistical or machine learning algo- rithms, we aim to analyse the wealth of data from patient activities to capture the habits and changes in habits which we can use to enrich our prior knowledge of how individuals usually perform their activities. Hence, we achieve a solution which is personalised to meet the specific needs of dementia patients.

Human habit recognition In habit recognition, the aim is to extend activity recognition by extracting features of data that reflect how and when users perform daily activities. Human habits can be based on simple features of activities such as duration or frequency of activity. An example is determining that a user usually sleeps for 8 hours per day. Knowing the sleeping habits of the user helps to detect changes in the duration of sleeping, which could be triggered by changes in the health state of the individual. For example, usually spending more than 8 hours sleeping might be triggered by increased body weariness. An increase in the frequency of eating could indicate the problem of forgetfulness where the patient fails to remember that he has taken a meal already. If the level of forgetfulness increases, that could indicate the dementia stage of the patient is moving from stage 2 (normal forgetfulness) to stage 3 (increased forgetfulness). Apart from simple habits, we can also extract more complex activities such as co-occurrence of activities, regular activities, and regular interrup- tions. Co-occurrences of activities help to detect which set of activities are usually performed together, for instance, to detect that the patient usually eats dinner while watching television. We could also capture regular inter- ruptions of activities such as detecting that the patient usually wakes up three times per night to go to the bathroom. This knowledge combined with the pattern of travel followed by the patient could help to determine habits of the patient related to the problem of wandering, which occurs at stage 5 and stage 6. Other complex habits that can be extracted include the regular absence of doing an activity, such as detecting that the patient does not usually rest after eating. Furthermore, apart from capturing the known user habits, it is also necessary to detect new emerging habits which could further indicate the onset of a different stage of the disease.

12 GIBSON CHIMAMIWA Habit recognition in smart homes for people with dementia 80 I Ageing in a changing society Conclusion People with dementia experience cognitive decline along the developmental stages of the disease. The decline in memory triggers changes in the habits of patients. Human habit recognition assists in capturing patients’ habits as well as changes in the habits. The changes in habits could provide indicators regarding the stage of dementia the patient is moving towards. In this way, the progression to late-stage dementia can be slowed by providing interventions such as early treatment of the disease or other recommendations. The ability to provide early interventions would enable the patients to remain in their preferred environments for a longer time, which also reduces societal costs.

About the author: Gibson Chimamiwa Gibson Chimamiwa is a Newbreed PhD student under the Centre for Ap- plied Autonomous Sensor Systems (AASS), Örebro University, Sweden. His research interests include habit recognition in smart home environments for people with dementia. In particular, he is interested in using machine learning technologies to predict stage transition of dementia patients in order to slow the progression to late-stage dementia through treatment or other interventions.

GIBSON CHIMAMIWA Habit recognition in smart homes for people with de- 13 mentia Ageing in a changing society I 81 References Amiribesheli, M., & Bouchachia, H. (2018). A tailored smart home for dementia care. Journal of Ambient Intelligence and Humanized Com- puting, 9(6), 1755–1782. Lin, Q., Zhao, W., & Wang, W. (2018). Detecting dementia-related wandering locomotion of elders by leveraging active infrared sensors. Jour- nal of Computer and Communications, 6(05), 94. Prince, M., Wimo, A., Guerchet, M., Ali, G., Wu, Y., & Prina, M. (2015). World alzheimer report 2015–the global impact of dementia, an analysis of prevalence, incidence, cost and trends. Alzheimer’s Disease Inter- national, 17, 2016. Reisberg, B., Ferris, S., de Leon, M., & Crook, T. (1982). The global dete- rioration scale for assessment of primary degenerative dementia. The American journal of psychiatry, 139(9), 1136. Thompson, M. (2014). Occupations, habits, and routines: perspectives from persons with diabetes. Scandinavian journal of occupational ther- apy, 21(2), 153–160. Tiberghien, T., Mokhtari, M., Aloulou, H., & Biswas, J. (2012). Semantic reasoning in context-aware assistive environments to support ageing with dementia. In International semantic web conference (pp. 212– 227). Woods, R., Moniz-Cook, E., Iliffe, S., Campion, P., Vernooij-Dassen, M., Zanetti, O., & INTERDEM (Early Detection and Intervention in De- mentia) Group. (2003). Dementia: issues in early recognition and intervention in primary care. Journal of the Royal Society of Medicine, 96(7), 320–324.

14 GIBSON CHIMAMIWA Habit recognition in smart homes for people with dementia 82 I Ageing in a changing society Universal evidence-based design: How can new technologies support design for ageing? Vasiliki Kondyli

Understanding the needs of an individual and tailoring the design to suit these needs for each particular case is an ideal approach for design. However, designing for many is a more significant challenge as the design needs to accommodate a variety of requirements since people come in a range of shapes, sizes, strengths and abilities. Historically, humans’ universal archetypes, such as the Vitruvian man or the modernist figures of Modulor by Le Corbusier, have been used in design for centuries. But who is this universal man? Does design for the norm anticipate a broken arm, pregnancy, being a child or getting old? Nowadays, the standardised human forms are being questioned, new regulations impose considerations for universal accessibility, and guidelines concerning inclusive design are spreading through the design community (Figure 1). Universal design as a movement started in the 1970s, encouraging going above and beyond what is required by baseline accessibility regulations, emphasising a design-for-all approach that aims to meet the needs of individuals of diverse abilities, while benefiting the greatest number of people. But how can we achieve that? Although the act of designing has always been—and will always be—a creative process, it is important to consider what we base our speculations on when designing for people’s needs and abilities.

Figure 1. a. Vitruvian man (Leonardo da Vinci, 1490), b. Modulor (Le Corbusier, 1943, c. A people-centred approach that focuses on people’s individual needs and abilities (author).

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Evidence-based approaches suggest incorporating previous design knowledge in the design process, such as the use of existing buildings, analysis of user experience, and differences in gender, age and behaviours in existing environments. Evidence-based design (EBD) is not a linear or static process, nor does it provide a ready-made suite of answers, but it can help the designer to look beyond the limitations of his own knowledge and get reliable information on which to base decisions. In the following paragraphs we discuss how new technologies can help researchers gain information about humans’ behaviour in space, and also help designers during the design process. A special focus is given to ageing and the relevant aspects introduced by spatial cognition and environmental psychology in everyday life.

The role of new technologies in behavioural studies Behavioural studies on environmental psychology and spatial cognition have been a significant source of information on the effects of the built environment on people’s experience in space. For example, we know that visual access to nature as well as natural lighting have a positive effect on humans’ psychological and emotional well-being, an important conclusion for designing healthcare environments. By learning the needs of specific groups of people we can extract information that will lead to universal design principles, one example being the fact that ageing negatively affects visual acuity and so visually complex patterns should be avoided in indoor design. Currently an increasing number of behavioural studies employ a range of physiological methods of measuring users’ responses in situ, using wearable devices such as bracelets that monitor skin conductance (a marker of physiological arousal), eye-trackers that record the eye-movement in real time, and electroencephalogram (EEG) headsets that measure brain activity related to mental states and mood. This adds a layer of information that is otherwise difficult to acquire. For example, when people are asked about their stress rate, or if they detect a sign or a landmark during a navigation task, the researchers have to deal with human estimations and memories; yet when the participants’ physiological responses are measured during the task, many times the researchers discover that people’s responses are off the charts. This is a significant signal that our physiological state indicates our well-being, or our cognitive load, and so taking a closer look at these physiological states without the interruption of our consciousness could shed light on how the environment really affects us.

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Conducting studies in the physical environment and tracking participants in their everyday routine helps to come closer to the real challenges on people’s experience and increase the generalisation value of the study. For this reason, non-intrusive portable technologies are useful for data acquisition as they contribute to the general challenge of gradually moving the experimental settings from the labs to the real environment. However, these methods are still quite limited. A prominent limitation is that it is difficult to manipulate the real environment in order to create control situations and test the effects of environmental attributes on behaviour. To address this issue, virtual reality (VR) provides a number of possibilities to modify and create various controlled situations where you can simulate real-life interactive environments. Virtual three-dimensional environments are used with existing frequency in spatial cognition studies, as nowadays they are able to closely approximate real-world conditions due to recent advancements in computer graphics. They are also used to collect eye-tracking data with the VR headset. In our studies we focus on the visual and spatial cognition aspects in tasks such as navigation, spatial memory, orientation, visibility and detection of environmental changes in a variety of user demographics. We employ a range of sensors to track, analyse and represent in immersive environments people’s experience in space (Bhatt, Suchan, Schultz, Kondyli & Goyal, 2016). Investigating navigation performance in real built environments (e.g. airports, train stations, hospitals), requires the participation of people who repeat their everyday routine. For instance, in our case studies in the New Parkland Hospital (Dallas, Texas), we recruited participants from the local community, while in the navigation study in the train station in Bremen (Germany) we recruited a diverse group of inhabitants of Bremen with various familiarity levels with experimental built environment. Specifically, by investigating the orientation updating process during a navigation task, we explored the relationship between the familiarity level of participants and the environmental features they prefer as a navigation aid when they get disoriented (Kondyli & Bhatt, 2018).

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Figure 2. Left to right: Eye-tracking data analysis from the case study in the railway station in Bremen (Kondyli & Bhatt, 2018); Eye-tracking data and the set-up from the VR case study.

By analysing visual attention patterns, tracks of behaviour during decision making, and sketch maps by memory, we found that unfamiliar participants tend to use signage and landmarks, while familiar ones use structural characteristics of the environment, for example, the order of the platforms, the outdoor buildings, etc. As a next step, we replicated the navigation study in virtual reality, where we tested a new environment that was not familiar to any participant and, by manipulating the layout of the building as well as the position of landmarks and signs, we explored new aspects of re- orientation and navigation aids. Preliminary results indicate the importance of the position of the landmarks and the signs in direct relation to the anticipated visual range of the user as he moves in space, as well as the number of turns on the user’s likelihood of experiencing orientation loss (Figure 2). the effect of Exploring ageing for evidence-based design With ageing, the perception of the environment is reshaped by physical, sensory, and cognitive changes. People move more slowly, need more breaks during a walk and have less confidence in crossing the street or learning new shortcuts for the path to the market. However, the environment, in terms of architecture and the sensory or cognitive stimulation provided, can contribute to an independent and stimulating living environment for older users. Using these insights, an evidence-based design (EBD) approach means a more reliable anticipation of the changes occurring due to ageing and provides adaptive or universal design solutions.

86 I Ageing in a changing society Figure 3. An overview of the current knowledge on the issues related to ageing and a sample of design interventions that can be considered from an evidence-based design point of view.

For instance, empirical studies show that healthy ageing leads to cognitive and behavioural changes as a result of neurofunctional changes in brain structures. Spatial cognition is founded on brain structures that are particularly vulnerable to ageing. For example, the fact that older people tend to have difficulties in learning a new route or performing shortcuts in known paths is valuable for designing routes and signage on public buildings as well as specialised spaces such as care centres, community centres etc. In this area, there is a range of completed and ongoing behavioural studies focusing on the spatial features and their implications for various groups of

Ageing in a changing society I 87 older adults, as is the prevention of glare, appropriate lighting conditions, colour and contrast regulations for visual acuity and perceptual changes, etc. (Figure 3). This knowledge gives a new perspective to the definition of universal design principles that takes into consideration the various needs that emerge with ageing.

Design technologies focusing on human behaviour Designing for individuals and taking into consideration the knowledge and the context from behaviour are important for the success of the evidence- based design paradigm. However, the design assistive technologies are mostly engineering-oriented and lack the understanding of human behaviour factors. For this reason, following the framework introduced by DesignSpace (design-space.org), we suggest a holistic approach for architecture design and cognition encompassing the application of principles, practices and methods from the fields of architecture and engineering, as well as the field of spatial cognition and computation (Bhatt & Schultz, 2017). We contribute to the development of a technological framework for design by translating evidence from the behavioural studies to a list of prece- dents that can be embedded into advanced design systems, for example, parametric design systems (Kondyli, Bhatt & Hartmann, 2018) (Figure 4). In this way design assistive technologies that incorporate human-centred design criteria can enhance the initial design process by considering function, behaviour and affordance. By using human-centred criteria to generate geometries in advanced design systems, we can ensure that some human-centred design rules cannot be violated, for example:

i. design a lobby and choose the entrance position visually connected to the elevator and the information desk so that every visitor is able to detect them quickly, ii. test various layout configurations and keep a minimum distance on a path between locations A and B by considering the physical limitations for an old person or a person with mobility problems.

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Figure 4. The proposed evidence-based design methodology includes three steps: (a) extract evidence for human experience in space with behavioural studies, (b) interpret the evidence to design principles, and (c) introduce the principles to design systems so that we can implement morphologies that respect established universal criteria.

Evidence-based design in practice In the process of defining principles for universal design, we consider the empirical work in spatial cognition and environmental psychology as an important source of information. Expanding our knowledge on people’s experience in the built environment, especially for particular groups of the population such as older adults, contributes to better identification of needs and skills. To achieve this, a new framework for universal design that bridges the behavioural studies with design technologies for the initial stages of the design process would be a valuable resource. Recent advances in technology have a major role to play in facilitating the exploration of human behaviour in space, as well as incorporating this knowledge in designing assistive tools with a practical value for design professionals. However, even if we provide a starting point for the essential principles of universal design into the technological supported design proce- dure, we know that further work is required for this to be applied in practice. The problems that occur in the built environment are complex and often interlinked. Isolating one individual element or a user group may allow the principles to be used, but looking at the larger picture, normally multiple users with different needs are involved, and so it is difficult to avoid

Ageing in a changing society I 89 conflicting principles throughout the design process. Further work is required to translate more and more universal design principles from the empirical work as well as to promote the technological development that can support the interplay between these principles in the design arena.

Acknowledgments This project has received funding from the European Union’s Horizon 2020 research and innovation programme under the Marie Skłodowska-Curie grant agreement No 754285. Part of the research reported has been supported by the DesignSpace Group.

About the author: Vasiliki Kondyli Vasiliki is a Ph.D. student at the Center for Applied Autonomous Sensor Systems (AASS), as part of the Newbreed interdisciplinary program by Marie Skłodowska-Curie Action and the Örebro University. Her research work is developing in the interface of design computing, spatial cognition, and environmental psychology. Her research interest involves human perception and cognition in the built environment, inclusive design principles, as well as the development of a cognitive technological framework for people-centred parametric design with a special focus in ageing. Since 2016, Vasiliki has been a member of the DesignSpace group (www.design-space.org), and she has participated in CoDesign initiatives (www.codesign-lab.org).

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References Bhatt, M. & Schultz, C. (2017). People-centered visuospatial cognition: Next-generation architectural design systems and their role in design conception, computing, and communication. In S. Ammon, R. Capdevila-Werning (Eds.), The active image: Architecture and engineering in the age of modeling (pp. 207-232). Springer International Publishing. Bhatt, M., Suchan, J., Schultz, C., Kondyli, V. & Goyal, S. (2016). Artificial intelligence for predictive and evidence based architecture design. In Proceedings of the Thirtieth AAAI Conference on Artificial Intelligence (AAAI-16). Paper presented at 30th AAAI Conference on Artificial Intelligence (AAAI 2016), Phoenix Convention Center, Phoenix, United States, February 12-17, 2016 (pp. 4349-4350). AAAI press. DesignSpace: Cognitive technologies and educational discourse for people- centred spatial thinking and architecture design. www.design-space.org Kondyli, V. & Bhatt, M. (2018). Rotational locomotion in large-scale environments: A survey and implications for evidence-based design practice. Built Environment, 44(2), 241–258. Kondyli, V., Bhatt, M. & Hartmann, T. (2018). Precedent based design foundations for parametric design: The case of navigation and wayfinding. Advances in Computational Design, 3(4), 339–366.

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Implications of ageing for the design of cognitive interaction systems Lucas Morillo-Mendez

We are living longer in times of the biggest technological revolution human- ity had ever seen before. Trying to understand how these two facts interact with each other, or more specifically, trying to maximise the benefits that new developments could potentially offer for the enhancement of the quality of life of older adults, is a task on which we have already begun to work. In particular, the rapid growth of cognitive interaction systems (CISs) – technologies that learn and interact with humans to extend what human and machine could do on their own – offers a promising landscape of possibilities. The development of assistive technologies has benefited from interdisciplinary collaboration. For example, technologies may be developed for medical reasons between engineers and researchers in medicine. These could include devices that alert family members of dangerous situations in case blood pressure is too high or if the older adult falls or needs any kind of urgent assistance. Other reasons for creating new technologies for senior citizens are more related to psychological wellbeing: social robots for addressing problems such as loneliness and depression are a reality right now (Figure 1). However, there is another possibility that does not imply creating new technologies for assisting older adults, but creating new technologies that everybody could easily interact with, despite their final purpose and independent of the age of the user. Interdisciplinarity still plays a role for this to happen. Designers of new technologies must cooperate with those who provide the guidelines for correctly adapting them to the needs of different kinds of people. Even though we can create technologies specifically designed for helping older adults, they should also be able to enjoy every kind of new technology available for everybody else, such as the Internet, a kitchen robot or an autonomous car. One current example of an existing technology not designed with older adults in mind is videogames. Older adults playing videogames may sound like an alien idea to the reader, but as videogames age, the same thing will happen with their users. In a recent interview, Hamako Mori, an 89-year-old YouTube celebrity and videogame streamer, mentions that she is not playing multiplayer games anymore because she thinks that she slows down other players, but that she believes dedicated servers for older players will be created for everyone to compete

MORILLO – MENDEZ LUCAS 1 Ageing in a changing society I 93 in equal conditions (Coverly, 2019). This is a good example of older adults being able to enjoy new technologies already available for everybody else. Purely assistive technologies do not have to be the only means of increasing their quality of life.

Figure 1. PARO the seal is a real example of technology for providing companionship to older adults. Source: Master of None series, Netflix (2015).

Getting older in the fourth industrial revolution Despite the number of possibilities ahead of us, the co-occurrence of this elongation in the lifespan and the fourth industrial revolution has a concrete negative aspect. I will briefly try to illustrate it with a personal anecdote related to one of the older adults I personally appreciate most, which hap- pens to be my father. I remember that one time while in elementary school during the 90s, when I was around nine years old, I asked him: ‘-Dad, why don’t we have Internet? Some friends have it at home and they can use it for the writings we have to do for school.’ His answer might sound shocking today: ‘-Why would you want that? We have an encyclopedia if you want to consult any information.’ I would not say that my father was being ignorant, a judgement that can be easily made from our modern perspective. From my point of view, I find it easier to see that the world around himself was already moving too fast, and catching up is not always easy. In that time, my father and many other people could not see how the Internet had already started to make that a

2 94 I Ageing in a changing society physical encyclopedia or a newspaper feel analogue or outdated. Luckily, after some time he changed his mind and we got an Internet connection that he is using on a daily basis. This anecdote serves to illustrate something: nowadays, the feeling of the world being constantly ahead of us is perma- nent and more relevant than ever before, especially from a technological perspective. We are living longer than before while we are subject to a fast- paced rhythm in a world where the feeling of being left behind starts as soon as we blink for a second. If this is hard for all of us, close your eyes and imagine for a moment how complicated it can get for older adults to keep track. But there are reasons to be optimistic, at least from the technological perspective. We are currently immersed in what has been called the fourth industrial revolution, a period when the appearance of ground-breaking technologies is constantly challenging and moulding our way of living. If we stop and think about how this period could improve the lives of an ageing population and we design new technologies taking into consideration their needs, our future needs, it will be possible that nobody feels left behind. We will try to turn the double-edged sword of a continuously developing strange technology into an inclusion tool. For example, right now the topic of autonomous driving cars is being sold in terms of the ‘comfort’ of being able to do something other than driving, and in terms of ecology, safety and in terms of power and status (as every expensive car is in reality). Appar- ently, someone has forgotten that autonomous driving has the potential and of enhancing the independence of people with reduced mobility or cognitive decline. With knowledge and good will, innovative technology adapted for the needs of older people could be designed. In the beginning of the 21st century, we have witnessed the development of some interdisciplinary areas of knowledge concerned with empowering the end user, such as informatics, ergonomics or human-machine interaction (HMI), so there are reasons to believe that technology development companies will consider this knowledge. At the end of the day, extending the range of potential users would also have an impact on their benefits.

Understanding the cognitive needs of the user How could we know what makes older adults benefit the most from different technologies? There is not a simple answer to this question. The first thing that might come to the reader’s mind is to ask them directly, and this partially correct.

MORILLO – MENDEZ LUCAS 3 Ageing in a changing society I 95 Asking people their opinion about a technology is the most straightforward way of gathering valuable information, and in fact it is traditionally associated with the world of marketing. Focus groups or interviews are familiar concepts that we associate with testing a product, but on some occa- sions, for opinions to be valid and solid, the product should be in a post- development phase that allows for it to be tested (or at least it should be somehow familiar to the user). When this is not the case, when opinions are based on predefined ideas, results should be taken with caution: my opinion about autonomous driving might be biased towards the idea that the car will take care of everything and I will be able to take splendid naps, while another person might think that autonomous driving is the synonym of a four-wheeled coffin. While testing it on a safe ground and controlled environment (simulator, virtual reality, closed circuit, etc.) and basing our opinions on that experience is a possibility, this approach implies designing a prototype that might be far from the final product. Even though it is not the ideal, it is hard to deny that these kinds of tests may be helpful for the im- mediate steps of the design. However, opinions are subjective and there is more valuable information that can be gathered that the person testing the system is not aware of. In a risk assessment experiment, independent of the opinion of how dangerous the participant thinks a certain situation could be, we can gather other external information such as whether the participant was watching the information that announced danger by means of tracking their gaze. Imagine an autonomous car that suddenly disconnects. It is possible that some opinions about this event do not reflect the danger of the situation, and at the same time, there is a possible scenario in which the situation is dangerous indeed. This paradoxical situation may occur if the alert of disconnection is so sub- tle that the person does not see it, making it a dangerous situation despite subjective opinions. This objective perspective is more related to cognitive psychology and how academics work, but the situations and scenarios used in this type of research might be even further away from real technologies than the prototypes the industry works with. Cognitive psychology, the branch of psychology that studies how humans perceive, interpret and interact with the world, has traditionally used rather artificial scenarios and stimuli. Findings that have been found in a laboratory, using basic shapes and sounds and all kinds of controlled stimuli, are not easily generalisable to specific real tasks because the world is more complex than these settings. These two ways of gathering information are not mutually exclusive and they can complement each other. Nevertheless, given the advances in new

4 96 I Ageing in a changing society tools of research in cognition (e.g. physiological measures for heart rate or skin temperature, eye-tracking or neuroimage techniques that allow us to correlate internal states with brain activity) and the rapid growth of CISs, the disciplines of cognitive psychology and computer science are right now focused on each other. Because of the novelty and the youth of the HMI field, it is complicated to determine the extent to which previous findings in cognitive psychology are applicable to these new scenarios. The main focus of this research is to apply new paradigms of cognitive psychology in order to design better CISs for older adults. The next section enumerates some characteristics of human cognition and perception with the aim of clarifying the potential impact of cognitive psychology on the design of these new technologies. However, even if it won’t be its main focus, this research can also be complemented with qualitative questionnaires to gather opinions. After all, what is the point of creating something we are sure is effective if people just don’t like it?

Some characteristics of cognition It was previously mentioned that experiments in cognitive psychology have traditionally used rather artificial stimuli and settings. This is not wrong in itself, but generalising results that come from an extremely controlled environment to our everyday life and the future interactions to come is risky. If we are thinking of cognitive psychology as a science applied to real human interactions, we should be able to study cognition in real contexts. Humans assign meaning to their surroundings and integrate information from different sensory modalities; for that reason we say that our perception is multimodal. Studying different features from different modalities (i.e. pitch or energy for sound, shape and colour for vision) in isolation is useful for understanding them alone, but humans do not perceive the world as a simple sum of features. Our perception of the world is holistic, it is more than the sum of its parts. For this reason, psychology experiments are starting to use more naturalistic tasks and stimuli that are more relevant to everyday and real interactions (Risko & Kingstone, 2017). For example, eye tracking, a technique that allows us to see the exact points a person is looking at in real time, can be used for exploring what people at looking at in a driving context, as well as many other contexts (Figure 2). Another reason for insisting on naturalistic research as a need for the design of CISs is related to a theory of cognition called embodied cognition. In short, we could say that it is a theory that puts emphasis on cognition at

MORILLO – MENDEZ LUCAS 5 Ageing in a changing society I 97 the service of real interactions with the environment (for a review, see Wil- son, 2003). Our ideas and thoughts of the world exist as a result of contin- uous interactions with our surrounding environment, and our ability to process that information exists for interacting with this environment once again. In conclusion, cognition and perception are not closed and isolated processes: we receive input from the external world while we are interacting with it in a never-ending loop. Beyond physical attributes and genetic factors, different groups of people who have been exposed to different environments might have different cognitive strategies to make sense of the world. This is the reason why individual differences between groups of users based on age, gender or cultural background must be taken into consideration when studying cognition for designing purposes. In the case of ageing, we also know that some aspects of cognition decline naturally, so identifying them in order to learn how can they affect interaction with a specific system is a good way of starting to take older adults into account.

Figure 2. An example of eye-tracking technique applied to driving, an everyday task. Each circle represents a different fixation (eyes in stationary position), the size of each circle represents the time of each fixation, and the straight lines between fixations represent each saccade (eye movements between fixations). Source: Raschke (2016).

6 98 I Ageing in a changing society Applying cognition to design I will use autonomous driving one last time as an example of a CIS older adults can benefit from. Despite autonomous driving being a reality, these systems are not fully ready for total automation and there is a human com- ponent that is still very important. This is because the autonomous driving function is not capable of solving every situation and manual control can be required at any point. Some questions that follow could be: What is the best way to indicate that the driver has to regain control? How can we make it sure that the driver does not trust blindly in the system so they do not disengage completely from the supervision task? These questions are not new, but they are investigated with a general population in mind. If we think specifically about older adults, the main logic would be the following: Autonomous driving has potential benefits for older adults, for example, enabling them to regain some independence by leaving home more often if they so desire. Autonomous driving could be particularly dangerous for older adults if their needs are not taken into account, which would also make them unwilling to use these types of systems. This turns a potential chance for independence into something to avoid. We could investigate what older adults need in this particular context and how to maximise benefits and reduce disadvantages that using these systems may have for them. In a driving simulator study, Ramkhalawansingh , Keshavarz, Haycock, Shahab and Campos (2016) showed that there are cognitive differences between young drivers and old drivers in the way that they integrate visual and auditive information. Participants of the study were told to drive at 80km/h, but after some time, the speedometer disappeared and they had to maintain that speed. Results showed that older adults were able to maintain their speed more easily than younger drivers when sounds of wind and en- gine were congruent with the driving image on the screen. Considering these results, one possible next step and question of research applied to autonomous driving could be: Is it possible that older adults would react faster to a disconnection that alerts the driver with a sound and image that are somehow congruent to each other than they would to another type of alert? That is a possibility that might be worth exploring, but this is just one of the infinite examples of how useful it could be to apply cognitive psychology to design, taking into account individual differences.

MORILLO – MENDEZ LUCAS 7 Ageing in a changing society I 99 Conclusion The age increase of the world population is occurring in parallel to the fast-paced development of new interactive technologies. Instead of turning these new systems into a source of frustration and potential danger for older adults, now we have the chance to study these adults’ cognitive idiosyncra- sies so they can make the best of the new technologies in terms of security and acceptability. Beyond opinion, we need to study those objective factors that humans are not necessarily aware of from the perspective of cognitive psychology. To do this, we must ensure that we experiment with participants under naturalistic and multimodal conditions that are easily generalisable to the type of potential interaction with the system that will be designed.

About the author: Lucas Morillo-Mendez is a PhD student at the Center for Applied Autono- mous Sensor Systems (AASS) at Örebro University. He obtained his BSc in psychology from Complutense University of Madrid in 2013 and he completed his MSc in Cognitive and Clinical Neuroscience from Goldsmiths College (University of London) in 2014. Lucas’s has also worked as a clinical neuropsychologist and in the field of Human Factor research for the automotive industry (Galician Automotive Technology Centre). As a natural consequence of having been surrounded by engineers and stunning new technologies for so long, his academic interests are currently orbiting the interdisciplinary field of Human-Machine Interaction. His current research focuses on studying the impact that certain aspects of visuo-auditory perception have in the design of cognitive interaction systems for different user profiles, especially older adults. Lucas is employed at Örebro Univer- sity since 2018 as part of the Newbreed-Successful ageing interdisciplinary doctoral program, co-funded by the European Commission through the Marie Skłodowska-Curie Actions (MSCA COFUND).

8 100 I Ageing in a changing society References Coberly, C (2019, September). 89-year-old “Gaming Grandma” plays video games to stave off dementia and entertain fans. Retrieved from TechSpot website: https://www.techspot.com/news/82043-89-year-old- gaming-grandma-plays-video-games.html Cognitive Human-Computer Interaction—IBM. (n.d.). Retrieved from researcher.watson.ibm.com/researcher/view_group.php Raschke, M. (2016, August 16). Eye tracking: the next big thing for automatic driving. Retrieved from Visual Computing BLOG website: https://www.visual-computing.org/2016/08/16/eye-tracking-the-next- big-thing-for-automatic-driving/ Ramkhalawansingh, R., Keshavarz, B., Haycock, B., Shahab, S., & Campos, J. L. (2016). Age differences in visual-auditory self-motion perception during a simulated driving task. Frontiers in Psychology, 7. Risko, E. F., & Kingstone, A. (2017). Everyday attention. Canadian Journal of Experimental Psychology/Revue Canadienne de Psychologie Expérimentale, 71(2), 89–92. Wilson, M. (2003). Six views of embodied cognition. Psychonomic Bulletin & Review, 9, 625–636.

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Ageing in a changing society I 101

Internet of things for improving older adults’ quality of life Gomathi Thangavel

This chapter is intended to provide you with an understanding of my research domain, ‘Quality of life’ and ‘Internet of things’, and also highlight the gap which I aim to address with my research. At the end of this chapter, I also describe my research plan along with my contributions.

Quality of life We already know that the population of older people around the world aged 65 or over is increasing in an unprecedented way, but what we are not fully aware of is how ‘well’ they are living. For some older persons, old age is a time of functional decline, increased dependency and loss of control due to their deteriorating health condition; but for many, they want to be independent and have control over their life without any restriction regardless of their health condition (Bowling et al., 2003). The World Health Organi- zation and United Nations stress the importance of assessing the well-being of older adults by measuring the improvements in quality of life (QoL) (Tesch-Roemer, 2012; WHOQOL, 2014). The World Health Organization defines QoL as ‘an individual's perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns. It is a broad ranging concept affected in a complex way by the person's physical health, psychological state, personal beliefs, social relationships and their relationship to salient features of their environment’ (WHOQOL, 2014). Since experience related to QoL is subjective, there is a lack of consensus over the definition of QoL for old age. Various disciplines debate the definition of QoL and it overlaps with the concepts of successful ageing, life satisfaction, happiness and well-being (Van Leeuwen et al., 2019). For example, in medicine, the studies mainly focus on health-related QoL, that is, on physical functioning and mental health, whereas psychology studies focus more on life satisfaction, happiness and inner peace. Social science studies emphasise retention of independence, social functioning, and mental and physical well-being. So, a large number of scales and tests were developed from each field to measure QoL of older adults. A taxonomy study on ageing funded by the European Commission reviewed the definitions of QoL

Ageing in a changing society I 103 from various literatures and concluded that QoL is ‘a dynamic, multi-level and complex concept, reflecting objective, subjective, macro-societal, and micro-individual, positive and negative influences, which interact together.’ (Brown, Bowling, & Flynn, 2004)

Quality of life aspects according to older adults Even though different disciplines have valued and stressed different aspects with regard to quality of life, understanding the QoL aspects from the perspective of older people themselves is important. In in-depth interviews conducted as part of previous research (see Bowling et al., 2003; Farquhar & medicine, 1995), when older adults were asked what they think about QoL, they emphasised the below aspects.

1. Social relationship – with family, friends and neighbours. 2. Social roles and activities – spending time with others, going out to the park or the club, participating in leisure and educational activities etc. 3. Health – feeling healthy, having and retaining good health. 4. Psychological and mental well-being – adaptations to life changes with a positive attitude towards life, peace of mind. 5. Home and neighbourhood – having a safe, secure and accessible neighbourhood. 6. Finance – having sufficient money and no financial worries. 7. Independence/autonomy – being able to manage on their own and have control. 8. Spirituality – having religious beliefs, being on a quest for meaning.

In addition, older adults gave higher importance to social relationships and social roles and activities in order to have a better QoL. Therefore, my study focuses mainly on improving the social aspects of QoL with the help of recent technologies like the Internet of things.

Internet of things Kevin Ashton coined the term ‘Internet of things’ (IoT) in 1999, when he proposed the idea of linking radio frequency identification technology with the Internet (Ashton, 2009). Now IoT, which is part of fourth industrial revolution, connects machines, devices, sensors and people. This technology can even give life to our real-world inanimate objects like furniture, doors and walls, and make them ‘smart things’ in the digital world. IoT has the

104 I Ageing in a changing society ability to sense and manipulate an environment in real time. When IoT is used alongside other technologies, like machine learning and big data, it can facilitate real-time monitoring, analysis and decision-making. If we are to loosely compare these technologies to the human body, IoT can be the neu- ral system; big data, the brain; and machine learning, the mind, or intelligence. Today, our everyday appliances are getting ‘smart’, sensors are getting cheaper, and hence IoT solutions that link them are being developed at a rapid phase (Majumder et al., 2017). The true potential of IoT has not been realised yet. However, the impact of IoT in business, industries and daily life is expected to be profound and to positively affect how some businesses, for example, health care and man- ufacturing, function currently. It is also expected to open doors to new businesses in areas related to smart cities, home automation and service industries. So far, the benefits and advantages understood, and the expectations we have about it, are merely the tip of the iceberg. These expectations and possibilities of IoT seem to be the driving force behind much of the research carried out on this topic, both by academia and industry.

Internet of things and quality of life In relation to ageing, IoT technology plays a major role in improving older adults’ quality of life (Baig et al., 2019). In terms of maintaining good health and having an independent life, IoT solutions like remote monitoring can help. The sensors monitor and track the activities of the older adults and generate notifications automatically to their family members and doctors via text message, phone call or voice message in case of unusual activity (e.g. fall detection, changes in health status, abnormal behaviour patterns etc.). Temperature, smoke and other types of sensors can also observe the home environment to detect, for example, gas emissions, room temperature and air quality and send an alert in case of any anomalies. Home automation sensors can help older adults to control the ventilation system, lighting, water, temperature etc. For persons with cognitive decline, IoT helps by prompting them when it is time to take their medicine and reminding them about appointments with doctors and others. In terms of maintaining social relationships and social participation, solutions like video chat, photo sharing and care robots are introduced. Even everyday objects like kettles and rollator are used and augmented with sensors to share the user presence and to perform everyday activities like having coffee and going for a walk together (Nazzi & Sokoler, 2011; Soro, Ambe, & Brereton, 2017).

Ageing in a changing society I 105 Previous review (Soro, Ambe, & Brereton, 2017) on IoT and ageing high- lighted that most of the IoT ageing studies were designed mainly from a technical perspective and less from a human perspective. End-user usability and accessibility were ignored in most of the studies (Baig et al., 2019). Studies did not engage the older adults in understanding their needs and did not include their views in their design process. Older people are described as a heterogeneous group, having complicated and diverse user requirements, and this stands as one of the challenges in developing and deploying IoT-based solutions among older populations (Xing, Peng, Liang, & Jiang, 2018). The above discussion reflects the benefits of using IoT for improving older adults’ QoL and highlights the pitfalls of ignoring the main issues and challenges. Therefore, this study will address those research challenges and approach the problem by including the older adults in all phases of IoT design.

Research Plan With all of the above discussion, my research aims to develop an end-user- oriented IoT solution, which will improve older adults’ QoL related to social aspects. To do this, we have started a case study for older adults with Parkinson’s disease.

Why particularly Parkinson’s disease? Parkinson’s disease is one of the complex progressive neurological diseases with an unknown cure and it affects different areas of the human nervous system. The complications of the disease become worse as age increases (Reeve et al., 2014). Nearly 4 million people around the world have been affected by this. In Sweden, close to 1% of people over the age of 65 are affected by Parkinson’s disease (“Swedish Neuro Registries - Parkinson Stats”, n.d.). Persons with this disease have both motor and non-motor symptoms, and these symptoms affect their QoL in different ways (Schrag, Jahanshahi, & Quinn, 2000). The initial review of literatures related to older adults with Parkinson’s disease and QoL, and an interview with a clinician reveal that physical functioning and social functioning are the most important areas in declining QoL (Den Oudsten, Van Heck, & De Vries, 2007). Older adults with Par- kinson’s disease experience physical limitations such as the shaking of hands, drooling, shuffle walking etc. Some feel ashamed to show these

106 I Ageing in a changing society symptoms in public, and this affects their ability to engage in social activities. As a result, they become socially isolated, which in turn causes other health-related issues like depression, cognitive decline etc. (Angulo et al., 2019). Due to the characteristics of Parkinson’s disease, spouses of older adults who are the primary caregivers are also affected in terms of engaging socially as couples (Roland, Jenkins, & Johnson, 2010). So it becomes very important to understand the social-related issues in relation to older adults with Parkinson’s disease and design solutions to improve their quality of life.

How it will be done The study will be done in three phases. In the initial phase, focus group and individual interviews will be conducted in order to understand problems and challenges in relation to social-related QoL from all stakeholders (older adults with Parkinson’s, relatives or caregivers, clinicians, therapists), and their technological requirements and usage will also be collected. Further phases will involve older adults with Parkinson’s and their caregivers for designing and evaluating the IoT prototype. In conclusion, this research will provide insight into older adults’ current status related to social aspects of QoL and how IoT can help them to improve their social functioning. This will also contribute to the existing design knowledge in the process of designing the IoT prototype in the context of improving social aspects of QoL by engaging the older adults throughout the study. Finally, the study aims at investigating whether the IoT prototype will enhance the older adults’ quality of life in terms their social functioning aspects.

About the author: Gomathi Thangavel Gomathi Thangavel is a doctoral student at Centre for empirical research on information systems (CERIS) as part of the Newbreed interdisciplinary program by Marie Skłodowska-Curie Action and Örebro University. Her current research focuses on development of Internet of Things solution based on Human Centred Design with a special attention on ageing and quality of life. She completed her Bachelor studies, specialized in Computer Science and Engineering from Anna university, India and obtained her post- graduate studies in Information Systems, specialized in IT in Public Admin- istration at School of Business, Örebro University, Sweden in 2015. She has experience in the IT industry for 9 years as Business Analyst and Solution Designer.

Ageing in a changing society I 107 References Angulo, J., Fleury, V., Péron, J. A., Penzenstadler, L., Zullino, D., & Krack, P. (2019). Shame in Parkinson’s disease: A Review. Journal of Parkinson’s disease, (Preprint), 1-11. Ashton, K., (2009). That ‘internet of things’ thing. RFID Journal, 22(7), 97–114. Baig, M. M., Afifi, S., GholamHosseini, H., & Mirza, F. (2019). A systematic review of wearable sensors and IoT-based monitoring applications for older adults: A focus on ageing population and independent living. Journal of Medical Systems, 43(8), 233. Brown, J., Bowling, A., & Flynn, T. (2004). Models of quality of life: A taxonomy, overview and systematic review of the literature. European Forum on Population Ageing Research. Bowling, A., Gabriel, Z., Dykes, J., Dowding, L. M., Evans, O., Fleissig, A., ... & Sutton, S. (2003). Let's ask them: A national survey of definitions of quality of life and its enhancement among people aged 65 and over. The International Journal of Aging and Human Develop- ment, 56(4), 269–306. Den Oudsten, B. L., Van Heck, G. L., & De Vries, J. (2007). Quality of life and related concepts in Parkinson’s disease: A systematic review. Movement Disorders: Official Journal of the Movement Disorder Society, 22(11), 1528–1537 Farquhar, M. (1995). Elderly people’s definitions of quality of life. Social Science & Medicine, 41(10), 1439–1446. Majumder, S., Aghayi, E., Noferesti, M., Memarzadeh-Tehran, H., Mondal, T., Pang, Z., & Deen, M. J. (2017). Smart homes for elderly healthcare: Recent advances and research challenges. Sensors, 17(11), 2496. Nazzi, E., & Sokoler, T. (2011, August). Walky for embodied microblog- ging: Sharing mundane activities through augmented everyday objects. In Proceedings of the 13th International Conference on Human Com- puter Interaction with Mobile Devices and Services (pp. 563-568). ACM.

108 I Ageing in a changing society Reeve, A., Simcox, E., & Turnbull, D. (2014). Ageing and Parkinson’s disease: Why is advancing age the biggest risk factor? Ageing Research Reviews, 14, 19–30. Roland, K. P., Jenkins, M. E., & Johnson, A. M. (2010). An exploration of the burden experienced by spousal caregivers of individuals with Parkinson’s disease. Movement Disorders, 25(2), 189-193. Schrag, A., Jahanshahi, M., & Quinn, N. (2000). How does Parkinson’s disease affect quality of life? A comparison with quality of life in the general population. Movement Disorders: Official Journal of the Movement Disorder Society, 15(6), 1112–1118. Soro, A., Ambe, A. H., & Brereton, M. (2017). Minding the gap: Recon- ciling human and technical perspectives on the IoT for healthy ageing. Wireless Communications and Mobile Computing, 2017. Swedish Neuro Registries – Parkinson Stats (n.d.) Retrieved from https://neuroreg.se/en.html/parkinsons-disease. Tesch-Roemer C. Active ageing and quality of life in old age (2012) [Inter- net]. Geneva: United Nations Economic Commission for Europe (UNECE), Retrieved October 20, 2019 from http://www.dza.de/filead- min/dza/pdf/2012_Active_Ageing_UNECE.pdf Van Leeuwen, K. M., Van Loon, M. S., Van Nes, F. A., Bosmans, J. E., De Vet, H. C., Ket, J. C., ... & Ostelo, R. W. (2019). What does quality of life mean to older adults? A thematic synthesis. PloS one, 14(3), e0213263. WHOQOL: Measuring Quality of Life. (2014, March 11). Retrieved Oc- tober 20, 2019, from https://www.who.int/healthinfo/survey/whoqol- qualityoflife/en/ Xing, F., Peng, G., Liang, T., & Jiang, J. (2018, July). Challenges for deploying IoT wearable medical devices among the ageing population. In International Conference on Distributed, Ambient, and Pervasive In- teractions (pp. 286-295). Springer, Cham.

Ageing in a changing society I 109

CHAPTER 4 Ageing from a societal perspective

Learning in older age Hany Hachem

The debate on lifelong learning in older age might be more confusing than illuminating. Different learning philosophies present their ideology as the right one, because they claim it serves the interests of older people. Different philosophies use similar argumentation to undermine other philosophies, and they seem mutually exclusive, while they share more than they seem to. In this chapter, I define lifelong learning, and I present the different statements of educational gerontology principles. I conclude that the next step is to find a common ground for a more integrated discussion on the future of educational gerontology by possibly a fourth restatement.

Lifelong learning for older people Learning for older adults is a way to enable mental stimulation and maintenance of physical health while facilitating social interactions with others, a sense of purpose, self-acceptance and autonomy (Boulton-Lewis, Buys & Lovie-Kitchin, 2006). It is also the process through which learners engage with each other to purposefully reflect, validate, transform, give personal meaning to and seek to integrate their ways of knowing (Mercken, 2010, in Formosa, 2019, p. 6). Lifelong learning for older people can also be called educational gerontology. Learning opportunities for older adults are commonly offered by Univer- sities for the Third Age (U3As), as a non-formal learning setting. The no- menclature comes from French ‘universités du troisième âge’. U3As date back to 1973 with the establishment of the first special educational programme for older people in Toulouse, France (Glendenning, 2001). Back then, the aim was to gather older people in active political groups through summer courses for retired individuals. Ever since, U3As have been flour- ishing under two generic models, the French and the British models (Hori & Cusack, 2006). Following the British model, teachers and students are equally levelled, since all members can assume one or both positions. Addi- tionally, members can engage in research activities, seeing that the self-help ideal consists of retired experts from all fields of knowledge. The French model is usually associated with a higher-education institution or township. It seems more academic, with topics focused on arts and humanities, offered through contracted courses (Swindell & Thompson, 1995). Hybrid models

HANY HACHEM Learning in Older Age 9 Ageing in a changing society I 113 were also formed; they combined features from the original French and Brit- ish models. These newly formed models are characteristic of North America in the USA and Canada, where U3As are referred to as Learning in Retire- ment Institutes (Swindell & Thompson, 1995). The movement reached all the corners of the world, Australia, New Zealand, China and Japan, North- ern and Southern Europe, South America and the Middle East. These educational centres are found in developing and developed nations, with a common vision to satisfy the interests and learning needs of older adults so they remain productive and active contributors in their communities (Mehrotra, 2003), or so they claim!

Learning philosophies There are many questions relating to the functioning of U3As. For instance, who sets their vision? Who defines the interests and learning needs of older adults? Why should they participate in learning opportunities? For what ends? In what forms will they remain productive? Then, how can they contribute to their communities? Who is benefiting from the participation of older adults in learning opportunities? These key questions, though seemingly straightforward, engage social and educational gerontol- ogists in ongoing debates, not only in an effort to answer them, but to question whether they should even be asked in the first place. Baars (1991) cautions that some crucial queries remain, so far, unanswered by gerontol- ogists, who sometimes fail to agree on the agenda of the debate itself. Philosophies of learning are very important because they translate into learning practices. Belief systems underlying learning philosophies directly impact actions in classrooms. Therefore, it is only logical that these actions are pre-defined according to a general philosophy of learning in U3As. The following questions (Tisdell & Taylor, 2000) are usually at the forefront when learning philosophies are talked about.

1. What is the purpose of education? 2. What is the role of the adult educator? 3. What is the role of students or adult learners in the classroom? 4. How are differences between adult learners perceived? 5. What is the primary worldview used in the analysis of human needs?

One autonomy-driven philosophy is the humanist one championed by Knowles (1970), another critical-emancipatory one is championed by Freire

HANY HACHEM Learning in Older Age 10 114 I Ageing in a changing society (1972). Somewhere in between lurks Mezirow’s (1995) critical-humanist approach. This approach focuses on individuals and their differences seen from psychological and personality points of views rather than from sociological and power-related perspectives. Hence, the biggest tension remains between the humanist and the critical-emancipatory approaches, and that is why I present these two philosophies. The first currently dominates educational gerontology, while the second is proposed as a catalyst of social change. To answer philosophical questions about learning from humanist and critical-emancipatory points of view, I will highlight the main points where these views flagrantly diverge. The purpose of education from a humanist perspective is personal fulfilment, where educators are seen as tech- nicians who deliver information to their learners, who also need to teach themselves. The dominant worldview is psychological, and differences between older learners are generic (Tisdell & Taylor, 2000). On the other side, the critical-emancipatory approach believes that social change is the goal of older-adult education, where teachers are leaders and liberators who aim to prepare modern-day activists. The general worldview is rational/sociological and observes the differences among older adult learners from a class perspective (Tisdell & Taylor, 2000).

Educational gerontology In the 1970s, educational gerontology came to life in the USA (Peterson, 1976). It formed an umbrella for the studies of education for older adults; there, it also included education about ageing. In a book edited by Frank Glendenning and Keith Percy published in 1990, the disagreement over the future of educational gerontology surfaced. Two camps emerged, one that is led by Percy (1990) defending conventional educational gerontology, the second led by Glendenning and Battersby (1990). The latter laid down what has been known till now as the first statement of educational gerontology principles, while Percy took the responsibility for restating these principles. Formosa (2011), 21 years later, modernised the principles of critical educational gerontology. The following is a display of the three statements of educational gerontology principles.

The first statement Glendenning and Battersby (1990) believed in four principles to guide educational gerontology. The first principle handles the need for a socio-political framework for educational gerontology, which examines society’s treatment of older adults based on their social status and resources. The second

HANY HACHEM Learning in Older Age 11 Ageing in a changing society I 115 principle is the need for a critical educational gerontology that operates in the interests of older adults themselves. It should not be seen as a subject like medicine nor as a miraculous cure for the lack of critical reflection, but as an ideological approach to the theory and practice of moral education for older adults. The third principle speaks of the evident relationship between critical educational gerontology and concepts like empowerment, emancipation, transformation, social and hegemonic control and conscientisation (Freire, 1972). Finally, the fourth principle highlights that critical educational gerontology is predicated on the notion of praxis, fostering a dialectal relationship between theory and practice. Therefore, there needs to be a critical geragogy, which refers to learning and teaching in relation to older people. This praxis, that is, critical geragogy, would be the articulation of critical educational gerontology principles. Formosa (2002) devised seven critical geragogy principles (Figure 1), which ought to be a practical translation of the critical educational gerontology principles:

Critical Geragogy Principles

•Through a political rationale, critical geragogy must fight ageist structures. •The fight against ageism is a communal one, but must recognize individual learning needs. •Not all types of education are empowering to older adults •Teachers are not only facilitators, but also committed to the sufferings of older adults. •Critical geragogy extends to distinct segments of older adults, not only to members of older adult education programmes. •Self-help culture is at the heart of critical geragogy. •Critical geragogy is counter-hegemonic, an agent of social change.

Figure 1. Critical geragogy principles.

The second statement The second statement of educational gerontology came as a response to the first statement, where Percy (1990) expresses his categorical opposition to the idea of a critical philosophy of learning. In his opinion, the aims of educational gerontology ‘are not a transmogrification into critical educational

HANY HACHEM Learning in Older Age 12 116 I Ageing in a changing society gerontology but falling back into line with the humanistic, liberal intrinsic purposes of all educational processes’ (p. 38). For him, education for older people should be no different from that for any age group, since learning is an intrinsic quest par excellence. To humanists, it is an overarching claim to consider that all older people are powerless and lack freedom, and therefore it is not valid to require that education be all about empowerment and emancipation. Moreover, to humanists, the critical approach seems to be full of an intrinsic and extrinsic mix of statements about education, and empirical claims about older people’s feelings and convictions. Percy (1990) disbelieves in the role of teachers in achieving the goal of critical educational gerontology, which is empowerment and emancipation. To him, the roles of the insurance company, the police officer and the social worker, for instance, are more important. Percy went on to condemn the claimed superi- ority of teachers in the sense that their worldview is more accurate than their students’, and hence that they have the right and duty to transform their students’ views through the learning process. He asked, ‘can students opt to remain complacent?’ (p. 235), obviously hinting at the inability of older adults to follow their interests under critical educational gerontology educators. Percy went even further in advising older adult educators to acknowledge that they will fail to achieve their goals until the world changes around them. In any case, what teachers have to offer seems exchangeable with the wisdom of any experienced and ‘wise’ older adult. Simply put by him: ‘a society which uses the experience of older people as an educative resource is also making a contribution to the self-fulfilment of those older people’ (p. 238). With the toned-down role of educators, we conclude the second restatement of the principles of educational gerontology.

The third statement The third statement of critical educational gerontology took 21 years to emerge. Formosa (2011) engaged in the debate between humanist and critical educational gerontology, from the latter’s side. He eloquently presented the views of both sides, and then moved to remind readers that a critical agenda to later-life learning is as relevant as ever, if not more than in the past. Formosa (2011) referred to Fromm’s (1941) claim that even the most inner drives of humans under capitalism are only culturally embedded forms of domination serving the current status quo. The newest form of educational gerontology principles had to be modern, since Marxism has gone out of fashion (Formosa, 2011) and human agency’s record levels have led to the fading of some social inequalities under neo-liberalism. The Freirean

HANY HACHEM Learning in Older Age 13 Ageing in a changing society I 117 pedagogical traditions are also cherished in Formosa’s third statement. Crit- ical educational gerontology should provide a transformative rationale by which social inequalities are uncovered and dealt with. This should happen with the help of ‘educators’ and not facilitators who not only are knowl- edgeable but also invite their students to reach new horizons. Thirdly, educational gerontology should promote listening, love and tolerance with the aim of increasing solidarity and fruitful dialogue among learners. Finally, a revolutionary praxis takes place when older adults are engaged in age-related social movements by founding them and reaching out through alli- ances with other like-minded groups.

Closing remarks Learning philosophies are very important in the conceptualisation of educational gerontology and in framing the vision of lifelong learning for older people. I have defined here what is meant by lifelong learning for older people. I have also presented different paradigms in educational gerontology. The way forward in contributing to this debate is a close examination of the statements of these principles in order to frame a common ground where a discussion on the future of educational gerontology would happen.

About the author: Hany Hachem Hany Hachem is a doctoral candidate at Örebro University. He specializes in the education of older adults, also known as, educational gerontology. He focuses in his research on learning philosophies in older age, in addition to the goals of educational gerontology and their operationalization. He believes education should be for all older adults, and should cater for their different needs.

HANY HACHEM Learning in Older Age 14 118 I Ageing in a changing society References Baars, J. (1991). The challenge of critical gerontology: The problem of social constitution. Journal of Aging Studies, 5(3), 219–243. Boulton-Lewis, G. M., Buys, L., & Lovie-Kitchin, J. (2006). Learning and active aging. Educational Gerontology, 32(4), 271-282. Formosa, M. (2002). Critical geragogy: Developing practical possibilities for critical educational gerontology. Education and Ageing, 17(1), 73– 86. Formosa, M. (2011). Critical educational gerontology: A third statement of first principles. International Journal of Education and Ageing, 2(1), 317–332. Formosa, M. (2019). Active ageing through lifelong learning: The Univer- sity of the Third Age. In Formosa M. (Ed.) The University of the Third Age and active ageing (pp. 3–18). Springer, Cham. Freire, P. (1972). Pedagogy of the oppressed. New Zealand: Penguin Books. Glendenning, F. (2001). Education for older adults. International Journal of Lifelong Education, 20(1–2), 63–70. Glendenning, F., & Battersby, D. (1990). Why we need educational gerontology and education for older adults: A statement of first principles. In F., Glendenning & K., Percy (Eds.), Ageing, education and society: Readings in educational gerontology, (pp. 219–231). Keele, Stafford- shire: Association for Educational Gerontology. Hori, S., & Cusack, S. (2006). Third-age education in Canada and Japan: Attitudes toward aging and participation in learning. Educational Gerontology, 32(6), 463–481. Knowles, M. S. (1970). The modern practice of adult education: Andra- gogy versus pedagogy. New York: Cambridge Books. Mehrotra, C. M. (2003). In defense of offering educational programs for older adults. Educational Gerontology, 29(8), 645–655. Mezirow, J. (1995). Transformation theory of adult learning. In M. R. Welton (Ed.), In defense of the lifeworld (pp. 39–70). New York, NY: SUNY Press.

HANY HACHEM Learning in Older Age 15 Ageing in a changing society I 119 Percy, K. (1990). The future of educational gerontology: A second statement of first principles. In F. Glendenning & K. Percy (Eds.), Ageing, education and society: Readings in educational gerontology, (pp. 232– 239). Staffordshire. Association for Educational Gerontology. Peterson, D. A. (1976). Educational gerontology: The state of the art. Educational Gerontology, 1(1), 61–68. Swindell, R., & Thompson, J. (1995). An international perspective on the University of the Third Age. Educational Gerontology: An Inter- national Quarterly, 21(5), 429–447. Tisdell, E. J., & Taylor, E. W. (2000). Adult education philosophy informs practice. Adult Learning, 11(2), 6–10.

HANY HACHEM Learning in Older Age 16 120 I Ageing in a changing society From theory to practice: Toward advocacy in social work practice to better address abuse of older people in developing countries Charles Kiiza Wamara

Introduction Abuse of older people is a violation of older people’s rights that undermines their right to a good quality of life. It also disregards the core principles of human rights and social justice that underpin social work. Abuse of older people has encompassing, severe and lasting implications for individuals and society. For example, it is a potential risk factor for the hospi- talisation of older people (Dong & Simon, 2013a). In addition, World Health Organization (2002) suggests that abuse of older people causes injury, isolation, despair and premature death. Consequently, it threatens peaceful co-existence between younger and older generations as well as successful ageing. Abuse of older people is rifer in developing countries (United Nations Department of Economic and Social Affairs, 2014). Witchcraft accusations are usually cited as the foremost form of abuse in African and Asian countries (ibid). Statistics indicate that 41 older people were killed in Kenya (Aboderin & Hatendi, 2013) and 2585 older women were killed in Tanzania over witchcraft accusations from 2008 to 2009 (see, Legal and Human Rights Centre Report 2009). In Bangladesh, 88% of older people experienced mental abuse, 54% economic abuse, and 40% physical abuse while 83% experienced neglect (Help Age International, 2014). These scary statistical facts not only indicate how deep-seated the problem is but also justify more robust and concerted action. The emphasis on abuse of older people in developing countries does not deny the existence of this social problem in developed countries as well. Studies show the prevalence rate to be 3% in the UK, 4% in Canada, 19% in Israel, and 29% in Spain (Yon, Mikton, Gassoumis, & Wilber, 2017). In Sweden, the prevalence rate is reported to be 4%, with women more affected than men (Anhlund, Andersson, Snellman, Sundström, & Heimer, 2017). Paradoxically, the fact that knowledge of abuse of older people remains low could heighten its occurrence. It is vital to emphasise that older women are more affected by this social ill than are older men because of the gender inequalities and social customs that marginalise wom-

FORNAME SURNAME Title of the thesis (or part of title) 9 Ageing in a changing society I 121 en across the globe. Abuse of older people is associated with the collapse of the family system and the current crisis of neoliberal capitalism. Whilst cases of abuse of older people are increasing in number, there seems to be limited social work action tackling this social ill. Most interventions for older people are embedded within conventional approaches such as remedial, maintenance, counselling and case management models that do not adequately address social problems of a structural nature. To that end, this chapter argues that such approaches cannot address abuse of older people because they can only address symptoms of the problem rather than the root causes. In view of the limitations of conventional social work approaches, I advance the need for social work to adopt advocacy to effectively address the problem of abuse of older people in developing countries. Advocacy in social work strives to influence the behaviour of decision-makers and improve their responsiveness to the needs of marginalised groups (see Allan, 2009). It involves working with or on behalf of the disadvantaged groups to influence decisions that concern them. It also involves interventions that aim at practice and policy change or development. Social work advocacy is appropriate when a certain social group is discriminated against and abused by privileged social groups. Unlike traditional social work approaches, advocacy improves the human capabilities of marginalised groups to act on their own behalf and hold decision makers to account for their actions and inactions.

Toward advocacy in social work practice Advocacy has been at the core of social work practice right from its inception. Social work professionals have a value system that prompts them to perform advocacy tasks to achieve social and political change for individuals and groups who cannot undertake such advocacy for themselves. Quite often social workers are called on to adopt non-violent strategies to advocate for people on the margins of life and to challenge injustice (see Sewpaul, 2016). Given the previous extensive work on the concept of advocacy, this chapter will not explore it in detail. It is more concerned with discussing the role of advocacy in addressing the problem of abuse of older people. Richan (1973) provides a succinct definition of advocacy as deliberate actions taken on behalf of an aggrieved individual, group or class of individuals who are in most cases subjected to discrimination and injustice. It includes providing a voice to those who do not have one themselves and,

10 FORNAME SURNAME Title of the thesis (or part of title) 122 I Ageing in a changing society second, challenging social stratifications and demarcations that perpetuate discrimination and injustice in society. As stated earlier, for social work to retain its identity and remain relevant in a changing world, it should engage in advocacy to address structural and power issues. Social workers should engage in advocacy work targeting policy makers to promote appropriate policy action and the enactment of anti-discrimination laws and policies. There are several ways in which social workers can effectively advocate for the rights of older people and, in particular, eliminate the abuse of older people. Social workers should facilitate the formation of stronger older people’s associations and think tanks to provide platforms for advocacy and raise older people’s voices against abuse. Equally, social workers should work with existing older people’s organisations to improve their capacities to advocate for and demand observance of the human rights of their primary targets. Likewise, social workers should promote dialogue between government and older people to discuss human rights issues. Addressing abuse of older people requires a dialogical praxis approach as a stepping stone in promoting the rights of older people in developing countries. It will equally facilitate a process for policy makers to understand and appreciate the existence of abuse and make relevant policies and strategies to end this injustice. Social work can advocate for the enactment of laws and policies protecting and promoting older people’s rights. In most countries where the incidence of abuse of older people is high, there are no such older people- specific laws protecting and promoting the rights of older people (Aboderin & Hatendi, 2013). Social workers can address this lack by col- laborating with social workers in positions of authority and in parliament to promote the enactment of laws and policies to address the challenge of abuse of older people. However, social workers should not stop at advocating for these laws but also sensitise older people about them. In countries that have enacted such laws, social workers need to increase their efforts and advocate for the enforcement of such laws. Furthermore, social workers need to advocate for the integration of critical social values in all policies addressing older people. They need to stand up and demand policy reforms when policies address only the needs of older people. Social workers need to espouse values such as citizenship, respect for diversity and personhood in policy documents. The point often overlooked is that older people in developing countries constitute a smaller percentage of the national population than they do in developed countries. This implies that

FORNAME SURNAME Title of the thesis (or part of title) 11 Ageing in a changing society I 123 they are too small a group to constitute a vocal constituency. Therefore social workers should work with older people in advocating for inclusive policies. Social work practitioners ought to empower older people to raise their voices against abuse. Substantial research indicates that empowerment of older people enables them to challenge injustice and gain control of the affairs that concern them (Butler & Webster, 2004). Through empowerment, older people will gain power, articulate their rights and further speak out against macro-structural challenges such as corruption, poverty, poor service delivery and poor governance that exacerbate their abuse. Social work can achieve this through designing face-to-face community sensitisation programmes for older people, participating in radio programmes emphasising the rights of older people and their value in society and presenting advocacy drama in communities, conveying messages on the rights of older people.

Theorising the abuse of older people in contemporary society No single theory can cogently account for the abuse of older people. However, I will attempt to explain its existence by using the political economy theory of ageing. According to this theory, abuse of older people stems from the role of the state and post-industrial capital, which together produce structures and social processes that lead to the marginalisation and domination of older people (Estes, 2001). Post-industrial capital is closely linked to globalisation, which drives privatisation (transferring government services and assets to the private sector), competition, ration- alisation (shifting national priorities) and an emphasis on technology. Such structural forces construct old age and ageing as a period of non- productivity, countering humanistic principles of personhood, citizenship and respect for diversity and leading to ageism, a potential vehicle for abuse of older people. Scholars have also underscored the “capitalist quest” for profit as a predictor of ageist attitudes that consider old age “non-productive and a period of social redundancy” (see Phillipson, 1982). Consequently, older people remain at the periphery of the labour market, which depicts them as a societal burden. Capitalist forces place great emphasis on the reduction of state expenditures, which implies that older people have to become self-reliant and consequently active players in the market. Responsibility for wellbeing and security remains in the hands of older people, which makes them more vulnerable to abuse. They have to be consumers, hardworking and above

12 FORNAME SURNAME Title of the thesis (or part of title) 124 I Ageing in a changing society all enterprising. It is based on such individualistic philosophies that concepts such as “successful ageing”, “active ageing” and “positive ageing” come to the fore. Moreover, in such a context, the market “ensures that everyone gets what they deserve” (Monbiot, 2016). Indeed, this disempowers, disadvantages and disenfranchises older people, which exacerbates ageism, leading to the abuse of older people. Capitalism has also had far-reaching effects on the social work profession. It has stripped the profession of its operating space though neoliberal and managerial policies and structures (Jones, 2014). For instance, neoliberal and managerial practices keep social work practitioners occupied with record keeping, assessments and monitoring for public services. Hence, social workers have less time for the relational and person-centred tasks needed to safeguard older people from abuse. Relatedly, such policies continue to restrict social workers to a controlling role, to maximize se profits, rather than being agents of social change. With the commodifica- tion of ageing services, social workers are constructing older people as consumers and responsible citizens. This not only disempowers older people but also challenges their citizenship. As Jones (2014) rightly puts it, due to the impact of capitalism, the social work profession has “lost its autonomy and ability to define itself” (p. 487). In its current practice, one wonders whose interests social work serves, those of the paymaster or the service user. Furthermore, capitalist practice undermines the principles of citizenship and personhood that define social work. Subsequently, this devalues older people and eventually society develops fewer qualms about disregarding older people’s rights, which exacerbates abuse. Moreover, the erosion of citizenship is increasing marginalisation and forcefully turning older people into passive objects of decisions made by others. From the African perspective, the abuse of older people is largely a product of the social impacts of globalisation and capitalism. For instance, capitalism embedded in individualism and competition has eroded the collectivist social values of mutual respect and togetherness that under- pinned the care for disadvantaged people (Rankopo & Osei-Hwedie, 2010). Indeed, Sevenhuijsen (1997) presents a succinct and convincing argument that capitalism vilifies dependence and regards interdependence as inimical to individual and societal growth. The invaluable principle of reciprocity through which older people were guaranteed oversight and care has been left behind in the past. Moreover, globalisation, which is acutely characterised by migration, has had perilous effects on the family system, leading to an epidemic of loneliness, resurgent old-age poverty and

FORNAME SURNAME Title of the thesis (or part of title) 13 Ageing in a changing society I 125 isolation, which are potential pathways for the abuse of older people. Based on the above context, I argue that social work advocacy is a more ostensibly committed approach to addressing abuse of older people in developing countries.

The paradox of social work in dealing with abuse of older people in developing countries While the social work profession has the right skills, knowledge and ethics base to advocate for improved conditions and the welfare of oppressed and vulnerable groups, it is silent on the abuse of older people. I maintain that the main dilemma in dealing with abuse of older people emanates from the consistent use of conventional social work approaches, such as counselling, cash grants and case management. A considerable body of social work literature criticises such approaches for failing to address the social impacts of globalisation and other social problems such as land conflicts, family disintegration, domestic violence, wars and poor service delivery that are predominant in developing countries (Mmatli, 2008). Indeed, it is often mentioned in the social work literature that current social work in developing countries is “amorphous” in structure and that its functions are not fit to tackle structural social challenges (see Arnold, 2012). Conventional social work approaches largely promote psychosocial functioning and also aim to raise individual incomes without devoting much effort to addressing macro-level structural problems. This, in reality, maintains the status quo. Broader advocacy of the collective interests of older people is absent from social work practice. As a result, social work advocacy of the observance of the rights of older people is lacklustre. Ar- guably, social work’s reluctance to implement advocacy initiatives contra- venes professional obligations that require social workers to advocate for and promote human rights and social justice. The negation of this essential role is also a taint on the history and identity of the profession. It is clear in the literature that the social work profession originated as a voice advocating for the oppressed in society (Brown, Livermore, & Ball, 2015). By implication, social work since its inception has been destined to bring about social change though advocacy initiatives. However, the reluctance to carry out this advocacy role could be because social work, especially in the global north, is under state capture. Social workers still assume that advocacy is against their professional ethical values and they are afraid to annoy their paymasters. In developing countries, where the majority of

14 FORNAME SURNAME Title of the thesis (or part of title) 126 I Ageing in a changing society social workers are employed by non-governmental organisations, advocacy is also limited. This suggests that several reasons account for social work’s inability to engage in advocacy for older people. The fight against the abuse of older people is further bogged down by limited government action. Interventions addressing abuse of older people and other social problems in developing countries are mainly implemented by non-governmental organisations. Such interventions are limited in scope to address such a widespread problem of abuse. Relatedly, there is no political will to invest resources in programmes that aim to improve the welfare of older people due to the lack of “economic consideration and outright prejudice” from the policy makers (Wamara & Carvalho, 2019). In addition, older people are perceived as people with unmet needs rather than people with rights and values. This dents the positive image main- tained by other groups in society. Corruption remains one of the biggest challenges in the fight against the abuse of older people. This accounts for the increased land and property grabbing from older people who, by vir- tue of their marginalisation, cannot receive fair hearing in the courts of justice. Therefore, adopting an advocacy-based social work approach should be seen as a top priority if social work is to achieve better welfare outcomes for older people in developing countries. This is not solely because of the severity of abuse but also due to the structural changes, cultural shifts and constant change in a gradually globalising and technological world where family ties and other traditional care systems are progres- sively eroding.

Conclusion Abuse of older people remains a cardinal challenge affecting the rights and wellbeing of older people in developing countries. I have argued throughout this chapter that social work urgently needs to shift from traditional social work approaches and adopt advocacy in its practice if it is to remain relevant to older people. I have also argued that advocacy is better suited to addressing such abuse because it can lead to the enactment of laws and policies that can substantially lead to successful resolution of this public and health concern. Moreover, this chapter has suggested what social work can do to make advocacy work in effectively addressing the challenge. Social workers can facilitate the formation of stronger older people’s associations and think tanks to provide platforms for advocacy, promote dialogue between government and older people to discuss human rights issues, collaborate with social workers in positions of authority and

FORNAME SURNAME Title of the thesis (or part of title) 15 Ageing in a changing society I 127 in parliament to influence the enactment of laws and policies, empower older people to speak for their rights, and advocate against structural challenges that exacerbate abuse.

About the author: Charles Kiiza Wamara Charles Kiiza Wamara holds a Master of Arts in Advanced Development in social work, a Bachelor of Social Work and Social Administration. He is currently employed by Örebro University as a doctoral student in the field of social work at the school of Law, Psychology and Social Work under the Newbreed Research School.

16 FORNAME SURNAME Title of the thesis (or part of title) 128 I Ageing in a changing society References Aboderin, I. & Hatendi, N. (2013) Kenya. In: P. Amanda (eds.) Interna- tional perspectives on elder abuse. New York, USA: Routledge, 122 – 133. Anhlund, P., Andersson, T., Snellman, F., Sundström, M. & Heimer, G. (2017) Prevalence and correlates of sexual, physical, and psychological violence Against Women and Men of 60 to 74 years in Sweden. Jour- nal of Interpersonal violence, 1 – 23. Allan, J. (2009). Doing critical social work. In: J. Allan, L. Briskman and B. Pease (eds). Critical Social Work : Theories And Practices For A So- cially Just World. Crows Nest: Allen and Unwin. Arnold, E. N. (2014). Social Work Practices: Global Perspectives, Chal- lenges and Educational Implications (Social Issues, Justice and Status). Nova Science Publishers Inc; UK. Brown, M. E., Livermore, M. and Ball, A. (2015). Social Work Advocacy: Professional Self-Interest and Social Justice. Journal of Sociology and Social Welfare, XLII (3) 45 – 63. Butler, S. S. & Webster, N. M. (2004). Chapter 4: Advocacy Techniques with Older Adults in Rural Environments, Journal of Gerontological Social Work, 41:1-2, 59-74. Dong X. & Simon, M.A. (2013a) Elder abuse as a risk factor for hospital- ization in older persons. JAMA Intern Med; 173:911–7. HelpAge International (2014) Violence against older people is a global phenomenon. HelpAge International press release. Jones, R. (2014) ‘The best of times, the worst of times: Social work and its moment’, British Journal of Social Work, 44(3), 485–502. Legal and Human Rights Centre (2009) Tanzania Human Rights Report 2009: Incorporating Specific Part on Zanzibar. Mmatli, T. (2008). Political activism as a social work strategy in Africa. International Social Work, 51(3), 297–310.

FORNAME SURNAME Title of the thesis (or part of title) 17 Ageing in a changing society I 129 Monbiot, G. (2016, April). Neoliberalism – the ideology at the root of all our problems. The Guardian, 15 April. Retrieved from https://truthout.org/articles/neoliberalism-the-ideology-at-the-root-of- all-our-problems/ Richan, W. (1973). Dilemmas of the social work advocate. Child Welfare, 52(4), 220-226. Sevenhuijsen, S. (1997). Feminist ethics and public health care policies. In DiQuinzio, P. and Young, I. M. (eds), Feminist Ethics and Social Poli- cy. Bloomington: University of Indiana Press, 49-75. Sewpaul, V. (2016). Politics with soul: Social work and the legacy of Nel- son Mandela. International Social Work, 59(6), 697–708. UNDESA (2014) UN findings flag violence, abuse of older women accused of witchcraft. New York. Retrieved from http://almaty.sites.unicnetwork.org/2014/06/17/un-findings-flag- violence-abuse-of-older-women-accused-of-witchcraft/ Wamara, K. C. & Carvalho, M. I. (2019). Discrimination and injustices against older people in Uganda: Implications for social work practice. Journal of International Social Work, 1–13. Yon, Y., Mikton, C.R., Gassoumis, D. Z., & Wilber, K. H (2017) Elder abuse prevalence in community settings: A systematic review and meta- analysis. The Lancet Global Health, 5(2) 147 – 156.

18 FORNAME SURNAME Title of the thesis (or part of title) 130 I Ageing in a changing society Addressing diversity in later life Merve Tuncer

Introduction It won’t be a ground breaking idea to claim that we need to adopt a more diversified understanding of old age and later life. But if we look more closely at the contemporary ageing models that have been applied by policy- makers in recent decades, we can see the need for a more intersectional and diverse approach to growing old. Here, I attempt to give an overview of the current neoliberal ageing models and suggest an intersectional life course approach as an antidote for the missing parts in our understanding. Later, I discuss some issues that are specific to certain social divisions by giving examples from my own research project.

Intersectionality as a tool to understand diversity The body of work on intersectionality is mainly built upon gender scholars’ contributions. Age as a significant marker was not in the picture for a long time. This can be seen from the main paradigms in ageing models which are still quite strong both in public policy and discourse. My research aims to understand the complexity of ageing experiences in relation to intersecting positions. More specifically, I look into the everyday life experiences of women who migrated to Sweden in their early/mid-adulthood and choose to age here. For this reason, I am trying to look into their everyday lives by looking at the intersection of different social divisions such as gender, class and ethnicity with a twist of life course perspective. Social divisions (Yuval-Davis, 2006) function in multiple levels; in one sense they are organisational, intersubjective and experiential, in another sense they are subjective and dealt with issues related to everyday experiences such as inclusion, discrimination, aspiration and identity. On the last level they are representational; they are expressed in images, texts, ideologies and policies. An intersectional approach to these social divisions has the potential to show us how these different positions are interrelated. It is not about difference, it is about the relations that are generating inequality. Taking Yuval-Davis’ (2006) interpretation of intersectionality as a point of departure, my project aims to tackle issues regarding these social divisions by avoiding an additive logic. Since intersectionality is mainly being informed by gender scholars, the issue of adding certain social divisions to

Ageing in a changing society I 131 research has been discussed widely. I am very well aware that adding ‘age’ as an additional social division will not make this research an intersectional one. However, age-specific experiences in everyday life is a rather under- researched topic. In order to be able to address the complex manifestations of social inequality, all social divisions must be considered in relation to each other. Because of this, I aim to explore these age-specific experiences in relation to other social divisions. In other words, I think the experiences of older migrant women in Sweden qualitatively differs from the experiences of older migrant men or older Swedish women. Therefore there is a need for more diversity in our gerontological imagination (Torres, 2015), in order to be able to address the challenges and opportunities that are experienced by such a heterogeneous group. If we look into the mainstream ageing models, we can see that they imagine a singular, homogenous form of sub- jectivity for old age which in reality represents a highly privileged one. This standardised approach to ageing is far from understanding the concrete status of older people and sustains the dysfunction of many structural issues that are affecting older populations.

Looking into the life course under a neoliberal agenda The mainstream discourse on ageing and later life has started to shift into an individual-oriented paradigm. Now, we can discuss that this implies certain ‘positive’ approaches such as promoting autonomy and incorporating human agency and an increased involvement in ‘productive’ work. But we can also discuss the shift of responsibility from state to individual. We can discuss that the results of the individual oriented policies do not necessarily foster these positive aspects. On the contrary, if we dig deeper, most of the mainstream ageing models are based on transferring the ‘burden’ of old age to the shoulders of the individual. For instance, policies for ageing in place have been criticised for shifting the responsibility of care and support in terms of spatial life arrangements from the state organs to the individual and family. This shift from the public to the private is an outcome of a neoliberal understanding of later life. The ageing enterprise (Estes, 1993) thinks about old age in terms of costs, benefits, expenditures etc. while the social creation of dependency and need remains unaddressed. Life course becomes a useful tool to understand this social creation (El- der, 1975). It allows us to re-trace some steps back in order to understand the current situation. By looking at the events over the life course, we can get a better understanding of the root causes of certain disadvantages that are leading to precarity in later life, as well as the advantages which are en-

10 FORNAME SURNAME Title of the thesis (or part of title) 132 I Ageing in a changing society abling some older people to keep their heads above water. For instance, I argue that migration is an important marker over the life course that is affecting how people age and how they choose to live. The experience of migration brings certain advantages and disadvantages in its baggage. In a similar vein, we can argue that precarious lives lead to precarious ageing. For this reason, I will try to address life course by looking at different social divisions and trying to understand how these divisions intersect. The issues related to ethnicity, gender, class and age are the determinants with regard to the accumulation of advantage and disadvantage (Dannefer, 2003) in my research’s context. Since I will incorporate this intersectional approach, these divisions are not going to be addressed as sub-categories but rather will be incorporated in relation to each other.

A critique of model ageing If I would have to summarise the logic of mainstream model ageing (active, healthy, successful and productive ageing) by using only certain keywords, I would use ‘handy solutions’ and ‘self-responsibility’. I think these words would be quite useful to show the rigidity of these models. I argue that, mainstream models of ageing fail to address the different life styles, prefer- ences, patterns and strategies of groups who are not - “healthy, successful, wealthy and active”-, namely people who do not ‘fit in’ to the model. I will argue that these models suggest a one-size fits all approach which is result- ing in isolation, discrimination and the continuation of disadvantage. Adopted by important policy-making organizations such as the World Health Organization, the United Nations and the European Union, active ageing models are essentially developed from an economic productivity perspective. What they offer is basically an extension of working life so older people can keep contributing to economy as long as possible. This working life consists of both paid and unpaid work, meaning that these models en- courage voluntary unpaid work as well as extended retirement policies for later life. In addition to this, another aspect of active ageing policies is that they shift the responsibility from the state to the individual. Active ageing is based on being responsible for one’s health and care needs and therefore the costs of these. There are several points to be critical about in these models. Timonen argued that active ageing measures of policy-makers are “intended to maximise self-care and autonomy, and to push the ‘heavy lifting’ of care from the public/policy sphere towards the private sphere” (Timonen, 2016: 45). She argued that these policies which are based on independent living and

Ageing in a changing society I 133 health promotion seem to be based on the hope that problematic situations such as disease and poverty will not occur in later life. As she highlights, “where dependency begins, policy ends” (Timonen, 2016: 45). Therefore these handy solutions are formulated to benefit the ‘already healthy and wealthy’, rather than focusing on the underprivileged groups. For instance, they overlook the close correlation of socio-economic class and voluntary work. Voluntary work in later life requires good health and a steady income and/or high economic status. So being ‘socially productive’ is not something that can be prescribed to older people who are already struggling with poverty or poor health. Similarly, capitalising older people by promoting extended paid work overlooks the needs and demands for retirement while stigmatising those who retire ‘early’ and it carries the danger of forcing older people to work involuntarily. Lastly, model ageing frameworks are developed around a neoliberal model citizen. This model citizen is generally imagined as a retiree with a steady pension, in good health and with a family to support them. Also, they are imagined in a Western context with specific cultural undertones. For instance, the policies regarding old age care are developed around a Western ideal of later life. What is being understood as successful ageing or productive ageing can look quite different in different cultural contexts. The most important point here is to consider cultural diversity while avoiding stereotyping and essentialism.

Ethno-gerontology as an interdisciplinary sub-field Ethno-gerontology is a growing field which merges ethnicity and social gerontology scholars on common grounds by looking into the intersection of old age and ethnicity. As Simon Biggs (2014) pointed out, Standing’s approach to precarity has implications for certain underprivileged groups and one of these groups is the refugee and migrant communities. Precarity here refers to the increasing insecurity and decreasing well-being as the conditions of work and life gets tangled into a big mess under capitalist regimes. Migrant and refugee communities are among the most marginalised and segregated groups in today’s society. They often work in low skilled, manual labour and carry the burden of economic deprivation throughout their lives. From a life course point of view, the trajectory of these people’s lives is marked by the experiences which they accumulated during those early years. Today, there is much research (Dannefer, 2003; Ferraro et al., 2009; O’Rand, 1996) pointing out

12 FORNAME SURNAME Title of the thesis (or part of title) 134 I Ageing in a changing society the effects of accumulated inequality and the long term effects of being exposed to precarious conditions. Certain conditions such as malnutrition as a child, being exposed to environmental pollution, trauma and other damage-causing factors have an impact on the health condition in later life. The- ories such as cumulative advantage and disadvantage theory (CAD) and cumulative inequality theory (CI) suggest that individuals accumulate certain disadvantages and advantages over the life course depending on the opportunities and risks that they have been exposed to. Therefore the gap between individuals continues to widen during their lives. Migrant and refugee groups often face different kinds of discrimination and exclusion which is leading to social inequality in the broader picture. So taking these theories as a point of departure, we can argue that the structural aspects of inequality are benefiting the already privileged groups while keeping the underprivileged communities’ on the lower rungs of the ladder. This barrier to social mobility is especially visible in refugee communities. The structural system continues to generate inequality for the ones who are at the bottom of the social strata. The challenges they face put them in a vulnerable position in their everyday lives and this position affects their work and family relations. Moreover, it can be argued that the policies developed for underprivileged groups fail to address certain cultural differences. I am aware of the danger of using ‘cultural difference’ here, but this difference does not necessarily imply an essentialist point of view, but simply a diversified understanding of policy making. It is important to note that the translation of these cultural differences into policies does not necessarily mean identity-centred practices and implementations based on ethnicity. Instead, I argue that social services must be as diverse as possible so they are accessible for everyone.

Resisting ageism and old age stereotypes The question of ageism is at the very heart of understanding today’s social policies targeting the older population. It started to be discussed around the 1960s as a form of bigotry towards older people in the Western context. The actual term “age-ism” was first used by the American gerontologist Robert Butler in 1969. Since then, research on ageism attracted the attention of different disciplines by being discussed in relation to marginalisation and exclusion. Ageism can be understood as prejudicial attitudes and discrimi- natory practices towards older people that are often based on negative stereotypes. One of the most prominent aspects of old age discrimination is the ageist attitudes and policies towards older people in relation to work life. The early retirement policies are mostly based on old age stereotypes

Ageing in a changing society I 135 that relate old age with unproductivity. This emphasis on the older adults as an economically inactive population (i.e. the emphasis on old age dependency ratios and pension costs) deepens this issue and transforms into a type of scapegoating. Negative old age stereotypes assume that older workers are less creative, less cautious, less trainable and more resistant to change. While this ageist discourse ignores the contribution of older adults who are still in the workforce, it also devalues the un-paid and/or voluntary work that has been undertaken by older people. Being resilient to ageist stereotypes and practices is in close relation with the position of older adults in society since class, ethnicity and gender are determinant factors with regard to the potential of resistance and coping. For instance, the issue of care-giving becomes prominent when it comes to unpaid work in old age. There are many older adults who are caring for their spouses, children and grandchildren. Older women hold a specific position in care giving. Due to the gendered nature of care work, often older women are the ones who are providing care for people around them. A similar situation might also be said for the sandwich generation, who provide care for both older and younger generations. But in those cases too, women undertake the majority of familial care. This brings me to the second aspect of old age experiences: the experiences that are specific to older women.

The gendered nature of ageing experiences The life course theory suggests that early life experiences have long-term effects on health and well-being in later life. These experiences have an impact on the perceptions of trajectories as well as the trajectories themselves. Concomitantly, they shape a significant amount of an individual’s life. Gen- der plays a key role in determining one’s life trajectory. Therefore it is important to look into the gender-specific aspects of ageing. Women are often deprived of equal opportunities in terms of education, work and even civil rights in some contexts. In return, their participation in the paid work force is often lower than men’s (OECD, 2017), which concomitantly affects their income, health, and overall well-being. In a migration context, men in general have better opportunities. For instance, women’s participation to work and education in the host country is lower than men, is often fragmented after childbirth and is not sustainable. This is a determinant factor for their language learning opportunities. Men have an advantage to when it comes to learn the language of the host country (Liversage, 2009), so their integration process is faster and less painful. There are many studies focusing on the structural disadvantage where women are less exposed to opportunity

14 FORNAME SURNAME Title of the thesis (or part of title) 136 I Ageing in a changing society and more exposed to risk over their life course. The intersection of many disadvantages eventually leads to precarious conditions in later life. For example, women face poverty in countries where women’s participation in the workforce is low and where the only eligible pension is occupational. To give another example, women generally live longer than men. This results in a significant number of women who are living alone and often living without enough support. The situation even worsens if the person has poor health and is unable to access proper treatment. There is also the issue of oppression and expectations based on traditional gender roles. Women are expected to give more care, take more re- sponsibilities in the household and engage in more un-paid invisible work. In some cases, they are discouraged or restrained from engaging in educational activities or certain types of jobs due to cultural or religious stigma. Nevertheless, these gendered practices should not be considered in isolation from other structural components. Most research on migrant women focuses on familial roles and care and therefore often fails to explore the diversified nature of their experiences. Women also develop coping strategies, resistance practices and different household allocation mechanisms to over- come these barriers and these are all part of the everyday experiences.

Conclusion To sum up, it is evident that we need a diversified approach to old age. Theoretically adopting an intersectional life course can be a good way to capture this diversity. Diversity’s translation to social policy may be empowering for older people who are struggling with certain disadvantages. But it is also carrying a promise for more inclusive and egalitarian models.

About the Author: Merve Tuncer Merve Tuncer is a PhD in Sociology at Örebro University as part of the Newbreed Successful Ageing Doctoral Program and Work, Family and In- timate Relations (WFIR) Research Group. She completed her MA degree in Sociology at Istanbul Bilgi University with a dissertation on urban ageing and the right to the city. Her PhD project focuses on the experiences of migrant women who are ageing in Sweden. Her academic interests include social gerontology, gender, migration and urban studies.

Ageing in a changing society I 137 References Biggs, S. (2014). Precarious ageing versus the policy of indifference: international trends and the G20. Australasian journal on ageing, 33(4), 226. Butler, R. N. (1969). Age-ism: Another form of bigotry. The gerontologist, 9, 243-246. Dannefer, D. (2003). Cumulative advantage/disadvantage and the life course: Cross-fertilizing age and social science theory. The Journals of Gerontology Series B: Psychological Sciences and Social Sci- ences, 58(6), 327-337. Elder Jr, G. H. (1975). Age differentiation and the life course. Annual review of sociology, 1(1), 165-190. Estes, C. L. (1993). The aging enterprise revisited. The gerontologist, 33(3), 292-298. Ferraro, K. F., Shippee, T. P., & Schafer, M. H. (2009). Cumulative inequality theory for research on aging and the life course in V.L. Beng- ston, D. Gans, N.M. Putney, M. Silverstein (Eds.), Handbook of Theo- ries of Ageing (pp. 413-434) NY, USA: Springer Publishing Company Liversage, A. (2009). Life below a Language threshold’? Stories of Turkish marriage migrant women in Denmark. European Journal of Women’s Studies, 16(3), 229-247. OECD (2017). “Labour force participation rate, by sex and age group” in Employment (database). Data extracted on 22 Oct 2019 O’Rand, A. M. (1996). The precious and the precocious: Understanding cumulative disadvantage and cumulative advantage over the life course. The Gerontologist, 36(2), 230-238. Standing, G. (2011). Precariat: The New Dangerous Class. NY, USA: Bloomsbury Publishing Plc. Timonen, V. (2016). Beyond successful and active ageing: A theory of model ageing. Policy Press.

16 FORNAME SURNAME Title of the thesis (or part of title) 138 I Ageing in a changing society Torres, S. (2015). Expanding the gerontological imagination on ethnicity: conceptual and theoretical perspectives. Ageing & Society, 35(5), 935-960. Yuval-Davis. (2006). Intersectionality and Feminist Politics. European Journal of Women’s Studies, 13(3), 193-209.

Ageing in a changing society I 139

ELEONOR KRISTOFFERSSON AND THOMAS STRANDBERG (EDS.)

Ageing in a changing society: – Interdisciplinary popular science contributions from the Newbreed research school

Title: Ageing in a changing society: – Interdisciplinary popular science contributions from the Newbreed research school Publisher: Örebro University, 2019 www.oru.se/publikationer

Print: Örebro University, Repro, 12/2019

ISBN 978-91-87789-33-5 Table of contents Introduction...... 7 Eleonor Kristoffersson and Thomas Strandberg Chapter 1 – The biology of ageing Successful Ageing in the Oldest Old: Living longer. Living-well? ...... 13 Andreea Badache Can our lifestyle habits save us from developing ...... 21 age-related health issues? Konstantinos Georgios Papaioannou Later life: Living with inflammatory bowel disease and ...... 29 other co-morbidities Sarita Shrestha From Hippocrates to physical activity guidelines: ...... 35 Active ageing anno 2020 Jort Veen

Chapter 2 – Ageing and psychosocial adjustment Do newly recognised mental-health conditions in older adults ...... 47 bring new challenges? Maja Dobrosavljević Fear of crime in advanced age: A healthy vigilance or a ...... 53 problematic life restriction? Nadezhda Golovchanova Ageing after a life of criminal behaviour...... 61 © Authors 2019 Carmen Solares Title: Ageing in a changing society: Ageing with chronic pain: A life course perspective ...... 69 – Interdisciplinary popular science contributions Christiana Owiredua from the Newbreed research school Chapter 3 – Ageing and the fourth industrial revolution Publisher: Örebro University, 2019 Habit recognition in smart homes for people with dementia...... 79 www.oru.se/publikationer Gibson Chimamiwa Print: Örebro University, Repro, 12/2019 Universal evidence-based design: How can new technologies ...... 85 support design for ageing? ISBN 978-91-87789-33-5 Vasiliki Kondyli Implications of ageing for the design of cognitive interaction systems...... 95 Lucas Morillo-Mendez Internet of things for improving older adults’ quality of life...... 105 Gomathi Thangavel Chapter 4 – Ageing from a societal perspective Learning in older age...... 115 Hany Hachem From theory to practice: Toward advocacy in social work...... 123 practice to better address abuse of older people in developing countries Charles Kiiza Wamara Addressing diversity in later life...... 133 Merve Tuncer Introduction Eleonor Kristoffersson and Thomas Strandberg

1 The research school is co-funded by the European Commission through the Marie Skłodowska-Curie Actions, Co- funding of Regional, National and International Programmes grant no. 754285. acteristics, have effects on ageing. In developing a public health perspective on ageing, it is important not just to consider the losses associated with older age but also to consider what can be done to reinforce recovery and psychosocial growth. Ageing as a study object must therefore focus on a bio-psycho-social knowledge foundation from an interdisciplinary perspective. Everybody is ageing. People are ageing in jail or as former criminals. Migrants, who came from war to a foreign country late in life and whose pension rights are hence at a minimum, are ageing. Men and women are ageing, and the inequalities in pension payments are significant. People do not only age in societies where they can move into a small flat or a care home, but also in poverty, in the cold without a home or enough to eat. Furthermore, people are ageing with psychological disorders, such as neuropsychological impairments. People are also ageing with the new technology to integrate in their everyday life. Thus, ageing research cannot be based on a stereotype of older persons but has to take into account all the variations that exist in younger life. Interdisciplinary research can theoretically be understood with support from a critical realistic perspective. It can be stated that the reality is too complex to grasp within just one discipline, and the idea with critical realism is that the reality is stratified into levels (Danermark, 2002). The integration of knowledge from two or more levels is an essential part of the definition of interdisciplinary research, therefore, knowledge from several levels needs to be integrated into a deeper and/or a broader understanding of the ageing process. Alongside that explanation of an interdisciplinary approach we can also find examples of multidisciplinary and interdisciplinary ageing research that is driven by the recognition that a comprehensive understanding of complicated phenomena, such as ageing, is best achieved through contributions from different disciplines (Hagan Hennessy & Walker, 2011). In this anthology, we divided knowledge of ageing into four chapters built on the thematic areas mentioned above. The biology of ageing, as a central theme within the field of biology, covers the extension of a healthy lifespan, or a ‘healthspan’. Ageing and psychosocial adjustment includes an understanding of positive and negative wellbeing in ageing individuals through interdisciplinary lifespan perspectives. Ageing and the fourth industrial revolution covers the potential impact that new technologies may have in the ageing process. It also tries to address how to design new assistive technologies that take into consideration the needs of older persons. Ageing from a societal perspective examines ageing processes within and across societies, for exam-

8 I Ageing in a changing society ple, how ageing intersects with class, gender and further social divisions such as economic, political and cultural dimensions. A bio-psycho-social perspective offers a holistic view in understanding different aspects of ageing in a changing society, and in the following presenta- tions we will see examples of the doctoral students’ research project on ageing in different environments – disciplinary, cultural and contextual. Moreover, this project is particularly timely and for the future in that the World Health Organization has appointed the next 10 years, 2020–2030 as The Decade of Healthy Ageing.

Ageing in a changing society I 9

CHAPTER 1 The biology of ageing

Successful Ageing in the Oldest Old: Living longer. Living-well? Andreea Badache ‘A graceful and honourable old age is the childhood of immortality’ – Pindar

Figure 2. Rowe and Khan’s definition of successful ageing

ANDREEA BADACHE Successful Aging in the Oldest-Old: Living longer. Living-well? 6 18 I Ageing in a changing society Hossin, M. Z., Östergren, O., & Fors, S. (2017). Is the association between late life morbidity and disability attenuated over time? Exploring the dynamic equilibrium of morbidity hypothesis. The Journals of Gerontology: Series B, 74(8), e97–e106. doi:10.1093/geronb/gbx067 %J The Journals of Gerontology: Series B Leon, M., & Woo, C. (2018). Environmental enrichment and successful aging. Frontiers in Behavioral Neuroscience, 12(155). doi:10.3389/fnbeh.2018.00155 Older people image: Freepik.com Rowe, J. W., & Kahn, R. L. (1997). Successful aging. The Gerontologist, 37(4), 433–440. doi:10.1093/geront/37.4.433 %J The Gerontologist Saunders, G. H., & Echt, K. V. (2007). An overview of dual sensory impairment in older adults: Perspectives for rehabilitation. Trends in Amplification, 11(4), 243–258. doi:10.1177/1084713807308365 Sundberg, L., Agahi, N., Fritzell, J., & Fors, S. (2016). Trends in health expectancies among the oldest old in Sweden, 1992–2011. Euroepan Journal of Public Health, 26(6), 1069–1074. doi:10.1093/eurpub/ckw066 United Nations, D. o. E. a. S. A., Population Division. (2015). World Population Prospects: The 2015 Revision, Key Findings and Advance Tables. WHO. (2015). World report on ageing and health. Retrieved from WHO Library Cataloguing-in-Publication Data: http://apps.who.int/iris/bit- stream/handle/10665/186463/9789240694811_eng.pdf?sequence=1 WHO. (2018). Deafness and Hearing Loss Fact Sheet.

ANDREEA BADACHE Successful Aging in the Oldest-Old: Living longer. Living-well? 7 Ageing in a changing society I 19

Can our lifestyle habits save us from developing age-related health issues? Konstantinos-Georgios Papaioannou

Ageing in a changing society I 21 generates another question: Can an individual shift from ‘usual ageing’ to ‘successful ageing,’ and how can be accomplished? The answers to these questions are not easy to address, mainly due to the multidimensional character of the ageing process. Researchers focus on specific aspects of health, examining various outcomes in order to investigate the involvement of ageing in the pathophysiology of several conditions, diseases and well-being. In an effort to expand the knowledge on these questions, Örebro University founded the interdisciplinary research school of ‘Successful Ageing’ and welcomed, with the NEWBREED programme, 16 new early-stage researchers from all over the world to work on various pro- jects on ageing. This chapter describes some of the basic concepts of new research in the field of ageing biology and medicine and presents a work-in- progress project within the research performed in ‘Successful Ageing’ and the NEWBREED programme. The project is performed by the Metabolism, Inflammation & Physical Activity (MIPA) research group of Örebro Uni- versity and focuses on the relationship between different lifestyle behaviours, such as physical activity and dietary habits, and a possible mediator of age-related health called meta-inflammation.

22 I Ageing in a changing society meta-inflammation (Gregor & Hotamisligil, 2011), which is discussed in the next chapter.

Ageing in a changing society I 23 to their physical fitness level. Our research group has previously shown that the beneficial effects of PA on major inflammatory markers depend on intensity (Nilsson et al., 2018). Also, the latter study shows an association between time spent in moderate and intense PA with inflammation-related molecules in blood, such as C-reactive protein (CRP) and fibrinogen. The present project is expanding the investigation on inflammatory molecules and examines the relation of PA to a number of additional molecules of inflammation. More details about the project are discussed in the next section of this chapter. The role of nutrition in obesity is well known, but its contribution to the pathology of age-related diseases and inflammation needs to be elucidated. Dietary habits indeed may have a part in generating or preventing the development of at least some age-related diseases (Shlisky et al., 2017; Calder et al., 2017). A recent study from our research group suggests that a dietary pattern could have beneficial effects by promoting an anti-inflammatory systemic response (Nilsson et al., 2019). The aim of our current project is to investigate the effects of a dietary pattern on a number of pro-inflammatory, anti-inflammatory and metabolic markers.

24 I Ageing in a changing society flammatory and metabolic molecules in blood will be measured. The analysis and the interpretation of those measurements are expected to produce new knowledge regarding the potential relationship between novel molecules of inflammation and life-style habits such as physical activity and nutrition. Furthermore, the present study attempts to make an innovative step in the process of answering the question: Can our lifestyle habits save us from developing age-related health issues?

Ageing in a changing society I 25 References Autenrieth, C., Schneider, A., Döring, A., Meisinger, C., Herder, C., Koenig, W., Huber, G., & Thorand B. (2009). Association between different domains of physical activity and markers of inflammation. Medicine and science in sports and exercise, 41(9), 1706-1713. Bowling, A., & Dieppe, P. (2005). What is successful ageing and who should define it? British medical journal, 331(7531), 1548-1551. Calder, P.C., Bosco, N., Bourdet-Sicard, R., Capuron, L., Delzenne, N., Doré, J., … Visioli, F. (2017). Health relevance of the modification of low grade inflammation in ageing (inflammageing) and the role of nutrition. Ageing research reviews, 40, 95-119. Franceschi, C.I., Bonafè, M., Valensin, S., Olivieri, F., De Luca, M., Otta- viani, E., & De Benedictis, G. (2000) Inflamm-aging. An evolutionary perspective on immunosenescence. Annals of the New York academy of sciences, 908, 244-54. Green, A.N., McGrath, R., Martinez, V., Taylor, K., Paul, D.R., & Vella, C.A. (2014). Associations of objectively measured sedentary behavior, light activity, and markers of cardiometabolic health in young women. European journal of applied and occupational physiology, 114(5), 907-919. Gregor, M.F., & Hotamisligil, G.S. (2011). Inflammatory mechanisms in obesity. Annual review of immunology, 29, 415-445. Hotamisligil, G.S. (2006). Inflammation and metabolic disorders. Nature, 444(7121), 860-867. Hotamisligil, G.S. (2017). Inflammation, metaflammation and immunometabolic disorders. Nature, 542(7640), 177-185. Jin, K. (2010). Modern biological theories of aging. Aging and disease, 1(2), 72-74. Nilsson, A., Bergens, O., & Kadi, F. (2018). Physical activity alters inflammation in older adults by different intensity levels. Medicine and science in sports & exercise, 50(7), 1502-1507. Nilsson, A., Halvardsson, P., & Kadi, F. (2019). Adherence to DASH-style dietary pattern impacts on adiponectin and clustered metabolic risk in older women. Nutrients, 11(4), pii: E805.

26 I Ageing in a changing society Parsons, T.J., Sartini, C., Welsh, P., Sattar, N., Ash, S., Lennon, L.T., … Jefferis, B.J. (2017). Physical activity, sedentary behavior, and inflammatory and hemostatic markers in men. Medicine and science in sports & exercise, 49(3), 459-465. Rea, I.M., Gibson, D.S., McGilligan, V., McNerlan, S.E., Alexander, H.D., & Ross, O.A. (2018). Age and age-related diseases: Role of inflammation triggers and cytokines. Frontiers in immunolology, 9, 586. Rowe, J.W., & Kahn, R.L. (1997). Successful aging. Gerontologist, 37(4), 433-440. Sanada, F., Taniyama, Y., Muratsu, J., Otsu, R., Shimizu, H., Rakugi, H., & Morishita, R. (2018). Source of chronic inflammation in aging. Frontiers in cardiovascular medicine, 5, 12. Shlisky, J., Bloom, D.E., Beaudreault, A.R., Tucker, K.L., Keller, H.H., Freund-Levi, Y., … Meydani, S.N. (2017). Nutritional considerations for healthy aging and reduction in age-related chronic disease. Advances in nutrition, 8(1), 17-26. Xu, M., & Kirkland, J.L. (2016). Inflammation and ageing. In Bengtson, V.L. & Settersten, R. (Eds.) Handbook of theories of aging (3rd ed.). New York. Springer Publishing Company.

Ageing in a changing society I 27

Later life: Living with inflammatory bowel disease and other co-morbidities Sarita Shrestha

Ageing in a changing society I 29 IBD. By conducting these studies, we attempt to facilitate the accurate diagnosis and identify risk factors related to the disease and thereby enhance their quality of life and assist them to age successfully.

30 I Ageing in a changing society enhances their well-being by freeing them from the society’s expectations and demands (Bengtson & Settersten Jr, 2016). Older adults with IBD are ageing as well as in distress due to a chronic inflammatory disorder. Age- related changes occurring in older adults, physically and biologically include changes in inflammatory response. Individuals’ suffering from IBD is challenged not only by the disease itself but also by a wide range of psychosocial problems. The symptoms of IBD mentioned earlier, in the introduction, occur in a relapsing and remitting pattern. The symptoms create a burden, and limited treatment options and individuals’ reluctance to consult doctors and receive treatment due to feelings of shame are among the many factors that worsen the condition. Not only this, but patients with IBD also have a regular or temporary loss of bowel control. This may lead to stigmatisation, as it might mean a breach of social hygiene rules for others in the society (Dibley & Norton, 2013). Loss of bowel control may cause emotional distress and feelings of isolation among those individuals who experience it, which might result in a poorer quality of life. The situation may become even worse if the person suffering from IBD is an older adult. Also, problems related to bowel movements are more acceptable in certain decades of life compared to others (Dibley & Norton, 2013). For instance, a society considers such situations more usual for children or the very old.

Ageing in a changing society I 31 However, Havighurst argued that, until successful ageing is well defined, it should not be assumed that either being active or disengaging is appropriate. Since all the measures of theory testing for successful ageing have been criticised, there is some difficulty in the testing of successful ageing theories (Havighurst, 1961). Havighurst also believed that, instead of only considering elements of disengagement, the combination from both activity and disengagement theories could explain the processes of overall biological, social and physical ageing. I do agree with Havighurst, regarding incorporating elements of activity and disengagement theory since this may help both active and passive groups of individuals to age successfully in their own way. To integrate both positive and negative aspects related to ageing, I would like to discuss the theoretical model of strength and vulnerability integration in older adults.

32 I Ageing in a changing society adults fail to avoid or mitigate negative emotions, the SAVI suggests that older adults have less ability to down-regulate the experiences of bad feelings. This down-regulation is related to the consequences of reduced physiological changes that occur with ageing (Bengtson & Settersten Jr, 2016). To conclude, it is important to conduct research on age-related differences in patients with IBD or other related disorders. In this research project, findings from older adults with IBD will be compared with early-onset and adulthood-onset IBD. We believe that the findings related to IBD and other associated disorders in older adults play a vital role towards better understanding these groups of individuals and the challenges they face. The findings might help public health professionals to promote health in older adults living with IBD. Thus, it might improve their overall health, enhance their quality of life and support them to achieve elements of successful ageing.

Ageing in a changing society I 33 References Bengtson, V. L., & Settersten Jr, R. (2016). Handbook of theories of aging: Springer Publishing Company. Charles, S. T. (2010). Strength and vulnerability integration: A model of emotional well-being across adulthood. Psychological Bulletin, 136 (6), 1068–1091. Cumming, E., & Henry, W. E. (1961). Growing old, the process of disengagement: Basic Books. Dibley, L., & Norton, C. (2013). Experiences of fecal incontinence in people with inflammatory bowel disease: self-reported experiences among a community sample. Journal of Inflammatory Bowel Diseases, 19 (7), 1450–1462. Gisbert, J., & Chaparro, M. (2014). Systematic review with meta analysis: Inflammatory bowel disease in the elderly. Alimentary Pharmacology & Therapeutics, 39 (5), 459– 477. - Goffman, E. (1963). Stigma: Notes on the management of spoiled identity. Englewood Cliffs, NJ: Prentice-Hall. Havighurst, R. J. (1961). Successful Aging (Vol. 1). Marineata, A., Rezus, E., Mihai, C., & Prelipcean, C, C. (2014). Extraintestinal manifestations and complications in inflammatory bowel disease. Revista medico-chirurgicala a Societatii de Medici si Naturalisti din Iasi, 118 (2), 279–288. Rowe, J. W., & Kahn, R. L. (1997). Successful aging. The Gerontologist, 37 (4), 433–440.

34 I Ageing in a changing society From Hippocrates to physical activity guidelines: Active ageing anno 2020 Jort Veen

FORNAME SURNAME Title of the thesis (or part of title) 9 Ageing in a changing society I 35 to walk comfortably at a speed of 3 miles per hour, a minimum VO2max of 25 ml/kg/min is required (Young, 1997) and the minimum threshold VO2max to live independently is suggested to fall between 15 and 18 ml/kg/min (Paterson et al.,1999). In addition to cardiorespiratory fitness, muscular strength and power are also very important contributors to maintaining physical ability. When re- turning to the example of the older person who goes grocery shopping, it is not hard to understand that carrying the bag of groceries involves an important muscular strength element. Between the ages of 65 and 89 years, a loss of 1-2% of muscle strength has been reported (Young, 1997). However, the decline in strength starts even earlier, and of those who are 60 years and older, 15-30% are unable to lift or carry a weight of just 4.5 kg (Tieland et al., 2018). This age-related loss in muscle mass and function, also termed sarcopenia, recently widely received attention from scientists and health- care practitioners.

Photo 1. Sarcopenia can lead to a loss in independence.

10 FORNAME SURNAME Title of the thesis (or part of title) 36 I Ageing in a changing society In reality, many functional activities, like load carrying while grocery shopping, consist of a combination of both cardiorespiratory fitness and strength (Holviala et al., 2010). Early research by Borghols et al., (1978) investigated load carrying during walking and shows that oxygen uptake, heart rate and pulmonary ventilation (breathing) increases linearly with the amount of weight. This means that older people are more affected by the impact weight carrying has on their aerobic capacity, which is even further aggravated by walking uphill or taking the stairs. Thus, delaying the decrease in maximal oxygen uptake and of muscular strength is not only important for older people to stay healthy but also to prolong the time they can live independently. Exercise and physical activity can be an important strategy to attain this goal. The principle of the exercise regime by Hippocrates was simple: just do a little exercise, not too little and not too much. Combine this with eating in moderation and, according to Hippocrates, this would be the safest way to live a healthy life. To be honest, it is hard to argue with his statement. However, it leaves us with quite a few questions. How much is enough? What about the intensity? How often should it be performed, and are all forms of exercise of physical activity equal? Based on many scientific publications, the World Health Organization has published physical activity recommendations consisting of at least 150 minutes of moderate- to vigorous-intensity aerobic physical activity or 75 minutes of vigorous physical activity per week. Each session should be at least 10 minutes in duration and spread throughout the week. For further health benefits, older adults are recommended and encouraged to double the general recommendations for physical activity and additionally engage in a strength training programme twice a week and, if needed, balance training three times a week. Ideally, specific exercise programmes should be performed under the guidance of a qualified exercise practitioner, and older people with disabilities should aim to be as active as they are able to be. Indeed, despite their decline in cardiorespiratory fitness and muscular strength, older people can benefit highly from training programmes. In fact, older people can make similar relative improvements in aerobic capacity when compared to younger people. For example, a study by Kohrt et al., (1991) investigated the effect of a 12-month-long training programme consisting of 45-minute training sessions four times a week at an intensity between 76% and 83% of their maximal heart rate in 60- to 71-year-old males and females. No significant difference in VO2max improvement was found in between age groups or gender.

FORNAME SURNAME Title of the thesis (or part of title) 11 Ageing in a changing society I 37 Older-aged people can greatly benefit from resistance training programmes as well, and research shows that programmes consisting of 10 week, three days per week training at 80% at each individual one’s repetition maximum leads to an average improvement of 75.9% (37.4–134%) in muscle strength (Lambert & Evans, 2005). In comparison to younger people, older people see similar progression, although differences between specific muscles have been reported. Furthermore, research by Melov et al., (2007) shows that a resistance training programme can reverse a gene-expression profile that shows mitochondrial dysfunction. Simply stated, their research suggests that resistance training can reverse the ageing process in human skeletal muscle.

Photo 2. It is important to stay active, even at older age.

12 FORNAME SURNAME Title of the thesis (or part of title) 38 I Ageing in a changing society where functional capacity is optimal, after which a decline sets in. This period of ‘optimal functional capacity’ is described by Kuh et al. (2014) as acting as a functional reserve. In other words, the higher the functional reserve, the more of a buffer is present to delay the moment where disability and loss of independence will set in. This makes a life course approach of exercise and physical activity to optimise physical ability at older age an interesting and important topic to further explore, especially in the context of our global ageing population and its associated health-care costs.

Photo 3. Competitive master endurance athletes experience a minimal decline in VO2max.

FORNAME SURNAME Title of the thesis (or part of title) 13 Ageing in a changing society I 39 level. Simply stated, older people can benefit from past physical activity and exercising, even when they are currently inactive or not able to be active due to injury or disability. This is an important finding, especially for women since older women tend to suffer more from functional limitations at old age compared to men (Murtagh & Hubert, 2004). But now let’s take a look at the different types of physical activity. Phys- ical activity can roughly be divided into leisure time physical activity, consisting of exercises and sports activities but also cycling to work or walking the dog, and occupational physical activity. From the above-mentioned articles, only the study by Hinrichs et al., (2014) looked at both leisure time physical activity and occupational physical activity during the life course and reported a reverse effect of heavy occupational physical activity but not light occupational physical activity. A study by Kitamura et al., (2011) followed post-menopausal women for 5 years and found a positive effect of housework and farm work on physical ability. While many studies reported positive effects of leisure time physical activity, the negative effects of occupational physical activity on functional ability seems to depends on the intensity-duration relation and the type of work.

Photo 4. Heavy work during the life course can negatively influence physical function at older age.

14 FORNAME SURNAME Title of the thesis (or part of title) 40 I Ageing in a changing society Despite the overwhelming research confirming that physical activity and exercising are important for staying healthy and physically able, research regarding life-course physical activity is limited. For example, no studies have investigated the effect of specific endurance or strength sports activities over longer periods during adulthood and their effects on physical ability at older age. And performing these studies is challenging. To retrace information from participants, researchers have to rely on historical questionnaires, which involve methodological challenges like recall bias. And for the future? With today’s technological advancements it is possible to start following people’s physical activity and exercise behaviours though apps and online platforms. These technologies will make it much easier to quantify physical activity and measure corresponding physiological and psychological responses and eventually will help us to quantify Hippocrates’ training principle of exercising ‘not too little and not too much’ so we can live a healthy life.

FORNAME SURNAME Title of the thesis (or part of title) 15 Ageing in a changing society I 41 References Blair, S. N. (2009). Physical inactivity: The biggest public health problem of the 21st century. British Journal of Sports Medicine, 43(1), 1–2. Borghols, E. A., Dresen, M. H., & Hollander, A. P. (1978). Influence of heavy weight carrying on the respiratory system during exercise. Euro- pean Journal of Applied Physiology and Occupational Physiology, 38(3), 161–169. Bortz, W. M. 4th., & Bortz, W. M. 2nd. (1996). How fast do we age? Ex- ercise performance over time as a biomarker. The Journals of Gerion- tology. Series A, Biological Sciences and Medical Sciences, 51(5), 223– 225. Edholm, P., Nilsson, A., & Kadi, F. (2019). Physical function in older adults: Impacts of past and present physical activity behaviors. Scandi- navian Journal of Medicine and Science in Sports, 29(3), 415–421. Exercise Is Medicine. (2019). Exercise Is Medicine: A global health initiative. Retrieved from https://www.exerciseismedicine.org/ Hinrichs, T., Von Bonsdorff, M. B., Törmäskangas, T., Von Bonsdorff, M. E., Kulmala, J., Seitsamo, J., … Rantanen, T. (2014). Inverse effects of midlife occupational and leisure time physical activity on mobility limitations in old age: a 28-year prospective follow-up study. Journal of the American Geriatrics Society, 62(5), 812–820. Holviala, J., Häkkinen, A., Karavirta, L., Nyman, K., Izquirdo, M., Gorostiaga, E.M., … Häkkinen, K. (2010). Effects of combined strength and endurance training on treadmill load carrying walking performance in aging men. Journal of Strength and Conditioning Re- search, 24(6), 1584–1595. Kitamura, K., Nakamura, K., Kobayashi, R., Oshiki, R., Saito, T., Oyama, M., … Yoshihari, A. (2011). Physical activity and 5-year changes in physical performance tests and bone mineral density in post- menopausal women: The Yokogoshi Study. Maturitas, 70(1), 80–84. Kohrt, W. M., Malley, M. T., Coggan, A. R., Spina, R. J., Ogawa, T. Ehsani, A. A., … Holloszy, J. O. (1991). Effect of gender, age and fitness level on VO2max to training in 60-71yr old. Journal of Applied Physiology, 71(5), 2004–2011.

16 FORNAME SURNAME Title of the thesis (or part of title) 42 I Ageing in a changing society Kuh, D., Karunananthan, S., Bergman, H., Cooper, R. (2014). A life- course approach to healthy ageing: maintaining physical activity. Pro- ceedings of the Nutritional Society, 73(2), 237-248 Lambert, C.P., & Evans, W.J. (2005). Adaptations to aerobic and resistance exercise in the elderly. Reviews in Endocrine & Metabolic Dis- orders, 6(2), 137–143. Melov, S., Tarnopolski, M. A., Beckman, K., Felkey, K., & Hubbard, Al. (2007). Resistance exercise reverses aging in human skeletal muscle. PLos One, 2(5), e465. Murtagh, K. N., & Hubert, H. B. (2004). Gender differences in physical disability among an elderly cohort. American Journal of Public Health, 94(8), 1406–1411. Patel, K. V., Coppin, A. K., Manini, T. M., Lauretani, F., Bandinelli, S., Ferrucci, L., & Guralnik, J. M. (2006). Midlife physical activity and mobility in older age: The inCHIANTI study. American Journal of Pre- ventative Medicine, 31(3), 217–224. Paterson, D.H., Cunningham, D. A., Koval, J. J., & St Croix, C.M. (1999). Aerobic fitness in population of independently living men and women aged 55-86 years. Medicine and Science in Sports and Exercise, 31(12), 1813–1820. Pollock, M. L., Foster, C. Knapp, D., Rod, J. L., & Schmidt, D. H. (1987). Effect of age and training on aerobic capacity and body composition of master athletes. Journal of Applied Physiology, 62(2), 725–731. Stenholm, S., Koster, A., Valkeinen, H., Patel, K. V., Bandinelli, S., Gural- nik, J. M., & L, Ferrucci. (2016). Association of physical activity history with physical function and mortality in old age. The Journals of Gerontology. Series A, Biological Sciences and Medical Sciences, 71(4), 496–501. Tieland, M., Trouwborst, I., & Clark, B.C. (2018). Skeletal muscle performance and ageing. Journal of Cachexia, Sarcopenia and Muscle, 9(1), 3–19.

FORNAME SURNAME Title of the thesis (or part of title) 17 Ageing in a changing society I 43 Tikkanen, P., Nykänen, L., Lönnroos, E., Sipilä, S., Sulkava, R., & Hartikainen, S. (2012). Physical activity at age 20-64 years and mobility and muscle strength in old age: A community-based study. The Journals of Gerontology. Series A, Biological Sciences and Medical Sci- ences, 67(8), 905–910. Tipton, C. M. (2014). The history of “Exercise Is Medicine” in ancient civilizations. Advances in Physiology Education, 38(2), 109–117. Young, A. (1997). Ageing and physiological functions. Philosophical Transactions of the Royal Society B, 352(1363), 1837–1843.

18 FORNAME SURNAME Title of the thesis (or part of title) 44 I Ageing in a changing society CHAPTER 2 Ageing and psychosocial adjustment

Do newly recognised mental-health conditions in older adults bring new challenges? Maja Dobrosavljević

9 Ageing in a changing society I 47 the most prominent feature of the disorder; while in girls, problems with attention can be more prominent. On the other side, in adults we may observe substance abuse and risk-taking behaviours, frequent accidents and the presence of other mental health problems. Nevertheless, significant problems with attention and everyday functioning may persist to middle and older age in around 60% of children diagnosed with the condition. Additionally, ADHD is linked to an increased risk for many physical and mental health disorders and with potentially serious pharmacological treatment side effects in older age (Torgersen et al., 2016). With the growing population of older people across the world, it has become increasingly important to investigate how chronic and lifelong conditions such as ADHD affect health and well-being in advanced age.

10 48 I Ageing in a changing society years old (World Health Organization, 2015) may not be appropriate for this population.

11 Ageing in a changing society I 49 of ADHD and MCI can be recognised in pronounced difficulties with organising activities, inability to sustain attention, and memory problems, in addition to behavioural and psychiatric symptoms such as sleep disturbances, anxiety and depression. However, other authors argue that cognitive decline in older adults with ADHD is limited to attention and working memory (a part of the short- term memory responsible for containing information necessary for solving complex tasks). Additionally, this cognitive decline might be explained by accompa- nyingcomplex depressive tasks). symptomsAdditionally,(Semeijn this cognitive et al., 2015) decline. might be explained by ac- companying depressive symptoms (Semeijn et al., 2015). Figure 1. Suggested pathways between ADHD and MCI/dementia

AFigurelthough 1. Suggestedcoming from pathwaysthe limited between evidence, ADHD and a potential MCI/dementia link between ADHD and neurodegenerative disorders (MCI and different types of dementia) can be suggested. Callahan et al. (2017) proposed two potential pathways between ADHD Although coming from the limited evidence, a potential link between ADHD and and MCI, defined here as a prodromal stage of dementia (see Figure 1). neurodegenerative disorders (MCI and different types of dementia) can be sug- Ingested Hypothesis. Callahan 1, itet isal. proposed (2017) proposed that certain two geneticpotentialand/ pathwaysor early between neurodevelop- ADHD mentaland MCI, factors defined can producehere as aabnormalities prodromal stage in the of nervousdementia system (see Figure that may 1). lead to bothIn ADHDHypothesis in childhood 1, it is proposed and MCI/dementia that certain genetic later inand/ life.or Onearly the neurodevelop- other side, Hypothesismental factors 2 suggest can produces that abnormalitiesADHD and MCI in the/dementia nervous dosystem not thatshare may the leadsame to pathophysiologicalboth ADHD in childhood processes, and but MCI/dementia rather common later cumula in tivlife.e healthOn the-compromis- other side, ingHypothesis factors that 2 suggest come sbetween that ADHD the onset and ofMCI ADHD/dementia and thedo notonset shareof MCI the sameand dementiapathophysiological. As we previously processes, argued, but rather older common people with cumula ADHDtive health have -highercompromis- risks ofing developing factors that psychiatric come between and somatic the onset disorders of ADHD in comparison and the onsetwith non of -MCIaffected and dementia. As we previously argued, older people with ADHD have higher risks of12 developingFORNAME psychiatric SURNAME T anditle of somatic the thesis disorders (or part of intitle comparison) with non-affected individuals (Torgersen et al., 2016). In addition, other factors, including poor lifestyle behaviours and lower socio-economic status across the lifespan, may be just some of the health-compromising effects of ADHD that can lead to significant cognitive decline in older age.

12 50 I Ageing in a changing society Only a few studies addressed the question of whether people with ADHD are at higher risk of developing MCI or dementia. In order to gather available evidence, we plan to systematically search the literature using different electronic databases and to contact experts in the field. In the next step, we will obtain and use the data from the Swedish National Patient Register, which covers almost total population of Sweden and contains information on obtained medical diagnoses. Additionally, in line with the proposed Hypothesis 2, we aim to investigate whether risk-taking behaviours (traffic accidents), psychiatric (depression, anxiety, substance abuse, and suicidal behaviour) and physical disorders (cardiovascular diseases and diabetes) may play a role in mediating the association between ADHD and MCI/dementia.

13 Ageing in a changing society I 51 References American Psychiatric Association (2013). Diagnostic and statistical manual of mental disorders. 5th edition. Author; Washington, DC: American Psychiatric Association. Callahan, B. L., Bierstone, D., Stuss, D. T., & Black, S. E. (2017). Adult ADHD: Risk factor for dementia or phenotypic mimic? Frontiers in Aging Neuroscience, 9, 260. Depp, C. A., & Jeste, D. V. (2006). Definitions and predictors of successful aging: A comprehensive review of larger quantitative studies. The American Journal of Geriatric Psychiatry, 14(1), 6–20. Polanczyk, G., De Lima, M. S., Horta, B. L., Biederman, J., & Rohde, L. A. (2007). The worldwide prevalence of ADHD: A systematic review and metaregression analysis. American Journal of Psychiatry, 164(6), 942-948. Rowe, J. W., & Kahn, R. L. (1997). Successful aging. The Gerontologist, 37(4), 433–440. Seidman, L. J. (2006). Neuropsychological functioning in people with ADHD across the lifespan. Clinical Psychology Review, 26(4), 466–485. Semeijn, E. J., Korten, N. C. M., Comijs, H. C., Michielsen, M., Deeg, D. J. H., Beekman, A. T. F., & Kooij, J. J. S. (2015). No lower cognitive functioning in older adults with attention-deficit/hyperactivity disorder. International Psychogeriatrics, 27(9), 1467–1476. Simon, V., Czobor, P., Bálint, S., Mészáros, A., & Bitter, I. (2009). Prevalence and correlates of adult attention-deficit hyperactivity disorder: Meta-analysis. The British Journal of Psychiatry, 194(3), 204–211. Torgersen, T., Gjervan, B., Lensing, M. B., & Rasmussen, K. (2016). Optimal management of ADHD in older adults. Neuropsychiatric Disease and Treatment, 12, 79. World Health Organization. (2015). World report on ageing and health. World Health Organization. Retrieved from: https://www.who.int/ageing/events/world-report-2015-launch/en/

14 52 I Ageing in a changing society Fear of crime in advanced age: A healthy vigilance or a problematic life restriction? Nadezhda Golovchanova

NADEZHDA GOLOVCHANOVA Fear of crime in advanced age 9 Ageing in a changing society I 53 may or may not reflect the actual crime rates in the particular neighbourhood or society in which he or she lives. Different approaches to formulating the questions on fear of crime yield contrasting results regarding the frequency with which this fear is experienced, especially when it comes to crime surveys. LaGrange and Ferraro (1987) refer to two large surveys previously carried out in the USA. Both aimed to study the extent to which fear of crime is a significant problem for older adults. In one study that inquired about the fear of crime by asking closed questions (i.e. with fear of crime being one of several response alter- natives), 23% of older people admitted that fear of crime is a serious personal problem for them. In another study, in which open questions were formulated (i.e. responders had to indicate their fears themselves, without response options), only 1% of older adults mentioned fear of crime as a serious personal obstacle. Although these survey results were published decades ago, I believe that some lessons from these studies are still important today. Especially when studying people’s subjective experience, study results and conclusions are likely to be shaped by the way the questions are formulated.

10 NADEZHDA GOLOVCHANOVA Fear of crime in advanced age 54 I Ageing in a changing society range of factors that could be linked to feeling vulnerable than those directly and rationally associated with crime risk or crime experience. When approaching fear of crime in later life, in addition to criminologi- cal perspective, gerontological knowledge inevitably needs to be consulted (Greve, 1998). An attempt to present an ageing-specific yet general across- the-disciplines paradigm was recently made by Ferraro (2018) in proposing the gerontological imagination paradigm. Centred around six axioms, this paradigm encompasses a broad spectrum of methodological and thematic concepts that enrich gerontological research. The gerontological imagination paradigm relies on an understanding of human experience as subjective, unique and not easily explained by a rational approach (in this sense, gerontological imagination is in line with the symbolic paradigm assumptions mentioned above). Specifically, gerontological imagination devotes significant attention to the heterogeneity approach. When applied to ageing, the heterogeneity approach allows us to view older people as a diverse group of individuals with substantial variability in health, personality, social involvement, experienced past events and other crucial life aspects (Ferraro, 2018). Adding another layer of fear of crime experience to heterogeneity, or diversity, of individuals in advanced age enables us to move away from conceptualization of the older adults as a homogeneous fearful group (as demonstrated by correlational studies in which older adults are shown to experience more fear of crime compared to younger adults (for a review, see Ziegler & Mitchell, 2003). Recent research on fear of crime in older adult populations carried out using quantitative (Hanslmaier, Peter, & Kaiser, 2018), qualitative (Rypi, 2012) and experimental (Ziegler & Mitchell, 2003) methods point to various heterogeneity aspects in unsafety experience among older adults. In other words, in the general population of older adults, there are those who feel safe and those who feel unsafe; unsafety feelings may vary depending on contexts; those who feel unsafe may feel that way for various reasons; and those who feel unsafe may or may not be distressed because of it. Such a conceptualisation of unsafety experience theoretically links to the symbolic paradigm assumptions that consider a broad heterogeneous spectrum of factors to be investigated as potentially related to fear of crime and unsafety experience.

NADEZHDA GOLOVCHANOVA Fear of crime in advanced age 11 Ageing in a changing society I 55 show, for instance, that in Sweden, 10% of older adults aged 65–74 and 13% of those aged 75–84 admit avoiding going out in the evening for reasons of unsafety (BRÅ, 2018). However, if crime is a serious threat to individuals and/or their property, isn’t it natural to be fearful of such a threat, at least in certain contexts or to a certain extent, one could wonder? Being a psychologist, I see another important aspect of fear of crime research in identifying when and for whom fear of crime becomes problematic in everyday life. Although previous research shows that adults and older adults who are more fearful of crime tend to report more psychological distress (Beaulieu, Leclerc & Dubé, 2004; Pearson & Breetzke, 2014; Stafford, Chandola & Marmot, 2007), if we keep looking for differences within the general group of older adults, more nuances are likely to appear. One of the strategies to address these nuances is to continue the line of research initiated by Jackson and Gray (2010), which generally distinguishes between functional and dysfunctional fear of crime. Functional fear helps an individual to maintain control over perceived threats and does not affect the quality of life, whereas dysfunctional fear leads to quality of life reduction. In line with this, older adults who are fearful of crime can be seen as a diverse group regarding their psychological well-being. In other words, for some older adults fear of crime can become a healthy vigilance that keeps them alert in their daily life and, if necessary, stimulates them to take healthy precautions against crime (e.g., security alarms, avoiding certain areas, etc.) and does not prevent them from having an active and fulfilling life. On the other hand, for some other older people fear of crime may be a painful emotional burden that restricts them from being involved in activities outside of home and becomes one of the factors preventing them from fully enjoying life. Consequently, the research objective is to identify these differences among those fearing crime in order to be able to create meaningful interventions for the most vulnerable in this regard older adults.

12 NADEZHDA GOLOVCHANOVA Fear of crime in advanced age 56 I Ageing in a changing society About the author: Nadezhda Golovchanova Nadezhda Golovchanova is a doctoral student in psychology within the Newbreed Successful Ageing doctoral programme at Örebro University. She previously worked in Yaroslavl (Russia) at Demidov Yaroslavl State Uni- versity as a university lecturer and a project coordinator; as a school psychologist; and as a medical psychologist at a regional residential care facility for older adults. Her main research interests include psychology of ageing, existential dimension of human life, and psychotherapeutic process. Her current doctoral project concentrates on feelings of unsafety and fear of crime in advanced age.

NADEZHDA GOLOVCHANOVA Fear of crime in advanced age 13 Ageing in a changing society I 57 References Beaulieu, M., Leclerc, N., & Dubé, M. (2004). Chapter 8 fear of crime among the elderly: An analysis of mental health issues. Journal of Gerontological Social Work, 40(4), 121–138. doi: 10.1300/J083v40n04_09 Bilsky, W. (2017). Fear of crime, personal safety and well-being: A common frame of reference. Universitäts- und Landesbibliothek Münster. BRÅ (The Swedish National Council for Crime Prevention) Brott mot äldre. Om utsatthet och otrygghet. Report, 2018 https://www.bra.se/down- load/18.7c546b5f1628bc786c9752/1523529971976/2018_7_Brott_m ot_aldre.pdf De Donder, L., Buffel, T., Verte, D., Dury, S., & De Witte, N. (2009). Feelings of insecurity in context: Theoretical perspectives for studying fear of crime in late life. International Journal of Economics and Finance Studies, 1(1), 1–20. Elchardus, M., De Groof, S., & Smits, W. (2008). Rational fear or represented malaise: A crucial test of two paradigms explaining fear of crime. Sociological Perspectives, 51(3), 453–471. Doi: 10.1525/sop.2008.51.3.453 Ferraro, K. F. (2018). The gerontological imagination: An integrative paradigm of aging. Oxford: University Press. Gray, E., Jackson, J., & Farrall, S. (2011). Feelings and functions in the fear of crime: Applying a new approach to victimization insecurity. The British Journal of Criminology, 51(1), 75–94. doi: 10.1093/bjc/azq066 Greve, W. (1998). Fear of crime among the elderly: Foresight, not fright. International Review of Victimology, 5(3-4), 277–309. https://doi.org/10.1177/026975809800500405 Hanslmaier, M., Peter, A., & Kaiser, B. (2018). Vulnerability and fear of crime among elderly citizens: What roles do neighborhood and health play? Journal of Housing and the Built Environment, 33(4), 575–590.

14 NADEZHDA GOLOVCHANOVA Fear of crime in advanced age 58 I Ageing in a changing society Henson, B., & Reyns, B. W. (2015). The only thing we have to fear is fear itself… and crime: The current state of the fear of crime literature and where it should go next. Sociology Compass, 9(2), 91–103. doi: 10.1111/soc4.12240 Jackson, J., & Gray, E. (2010). Functional fear and public insecurities about crime. The British Journal of Criminology, 50(1), 1–22. doi:10.1093/bjc/azp059 LaGrange, R. L. & Ferraro, K. F. (1987). The elderly’s fear of crime. Research on Aging, 9(3), 372–391. Pearson, A. L., & Breetzke, G. D. (2014). The association between the fear of crime, and mental and physical wellbeing in New Zealand. Social Indicators Research, 119(1), 281294. doi: 10.1007/s11205-013-0489-2 Rypi, A. (2012). Not afraid at all? Dominant and alternative interpretative repertoires in discourses of the elderly on fear of crime. Journal of Scandinavian Studies in Criminology and Crime Prevention, 13(2), 166–180. doi: 10.1080/14043858.2012.729375 Stafford, M., Chandola, T., & Marmot, M. (2007). Association between fear of crime and mental health and physical functioning. American Journal of Public Health, 97(11), 2076–2081. doi: 10.2105/AJPH.2006.097154 Yin, P. P. (1980). Fear of crime among the elderly: Some issues and suggestions. Social Problems, 27(4), 492–504. Ziegler, R., & Mitchell, D. B. (2003). Aging and fear of crime: An experimental approach to an apparent paradox. Experimental aging research, 29(2), 173–187. doi: 10.1080/03610730303716

NADEZHDA GOLOVCHANOVA Fear of crime in advanced age 15 Ageing in a changing society I 59

Ageing after a life of criminal behaviour Carmen Solares

1 Ageing in a changing society I 61 stages are not sufficient to explain learning and social development trajectories during childhood. Furthermore, in our scientific and ‘Gaussian’ obsession to explain what is normal and what is abnormal, researchers focus on and settle for exploring what is expected for those who fall under the 95% area of a normal distributed population curve. However, real life goes beyond any statistical model because a small percentage, such as 5%, may represent thousands of individuals for whom the available scientific theories are not fully explaining the way they age. A few years ago, just before starting my PhD studies, I was working as a neuropsychologist at the psychiatric unit of a hospital far away from Swe- den. This was a quite uncommon situation because neuropsychologists are usually located in neurological departments where the patients are referred to assess their cognitive abilities after a brain lesion or because of an incip- ient neurodegenerative disorder. Interestingly, at the psychiatric unit we received patients with similar presenting complaints (i.e. memory problems, bizarre or disinhibited behaviours), but when we dug into their previous clinical history, we realised that most of them had been dealing with psychiatric, psychological and even cognitive problems during their entire life. How do these patients fit into the dichotomy paradigm of non-pathological and pathological ageing? What is ageing for an individual who has been challenged by psychiatric disorders during his/her life? This was an eye-opening experience. How are previous clinical, psychological, biological and social factors moderating and mediating ageing processes? Can research draw a theoretical unique line splitting ageing between pathology and normality? The answer is probably no, it cannot. The reality is much more complex than that.

2 62 I Ageing in a changing society mental factors influence biological parameters that will affect later developmental outcomes. The notion that critical periods exist is not free of controversy, but it is evident in how early cognitive stimulation and social interaction in toddlers impact the acquisition of abilities such as language later in childhood. Other models that may help in understanding ageing as a longitudinal process are the theories that postulate that adverse experiences along the lifespan contribute to the accumulation of disadvantage in later life stages. For instance, growing up in a poorly structured family with a low socio-economic level together with peers’ rejection and academic failure during childhood may foster the developmental of antisocial behaviours and drug use that may increase the likelihood that a person may get involved in criminal activities during adolescence and early adulthood. This cumulative continuity of disadvantages will contribute not just to the perpetuation of criminal behaviours later in adulthood but also to the development of mental health problems (e.g. personality disorders), physical health problems (e.g. cardiovascular diseases) and psycho-social problems (e.g. unemploy- ment and alienation feelings) while ageing. The accumulation of disadvantages is quite related to the ideas of the Pathway Model, another theoretical model that highlights the link between early-life experiences and ageing. The novelty of this model is its focus on how the combination of different favourable or adverse circumstances along the lifespan interact among each other and shape a life pathway, which will lead to positive or negative outcomes in ageing. Perhaps this model is much less determinist than the other two models because it emphasises the modification effect of social contextual factors in an individual’s life pathway, giving a secondary role to the influence of individual biological features on ageing. Thus, if we know that our experiences during different moments in life shape the way we grow up and age, if we know that our biological and social contexts shape life trajectories, researchers must assume that ageing is part of a continuum and they must consider the contribution of previous life factors to the study of ageing. Therefore, if we assume that ageing is how an individual develops along his/her entire lifespan, it will become obvious to include lifespan and longitudinal perspectives in our research de- signs. This will enrich our understanding of ageing. We will be able to describe different ageing trajectories and go beyond the dichotomy of normal versus pathological or successful versus unsuccessful ageing.

3 Ageing in a changing society I 63 The case of older offenders I have already mentioned the kind of ‘epiphany’ I had working at the psychiatric unit of that hospital, in that far-away country, where the patients I met left me with more open questions about ageing than answers I had for their presenting complaints. I became more interested in understanding what research said about what ageing means for people who have been challenged by mental health problems and adverse social situations throughout their lives (see Newton-Howes, Clark & Chanen, 2015). Suddenly, I stum- bled upon a very interesting group of people: older offenders. Older offenders are a potentially vulnerable population group for whom ageing processes cannot be understood without taking into account psychological, sociological, biological and criminal life-course variables. Among the older offenders, those ageing inside prison are a fast-growing group and they already represent between 10% and 19% of the prison population in different Western countries (Di Lorito, V llm & Dening, 2018). In fact, according to the Swedish National Council for Crime Prevention (BRÅ), almost 17% of the offenders admitted to prisonӧ in 2018 in Sweden were 50 years old or above. Criminal behaviour in ageing and long-term patterns of deviant behaviour along the lifespan are associated with different socio-demographic, socio-economic, psychiatric health and psychological risk factors that may influence the mental, neurocognitive and physical health as well as the psychosocial adjustment of older offenders (Corovic, Andershed, Colins & An- dershed, 2017). Moreover, the accumulation of disadvantages along the lifespan, together with the psychological stressors associated with prison life and/or with unadjusted behavioural patterns after release, contribute to ac- celerating the onset of ageing-related problems (Ginn, 2012; O’Hara et al., 2016; Sampson & Laub, 2001). Actually, offenders are usually considered older adults when they are 50–55 years old (Ginn, 2012; Fazel, Hope, O’Donnell & Jacoby, 2004). The relation between criminal behaviour, mental health and psychosocial adjustment has been widely studied before (Fazel & Seewald, 2012; Fazel, Hayes, Bartellas, Clerici & Trestman, 2016). Researchers have been mainly keen on risk and protective factors and the adverse consequences of the development of criminal behaviours during childhood, adolescence and early adulthood. There is a lot of research coming from psychology, criminology, social work and even health science that has tried to answer complex questions such as why an individual violates rules despite the social and juridical

4 64 I Ageing in a changing society punishments, why an individual desists from or persists in his criminal ca- reer, or the link and the impact of criminal behaviour on health, among other questions. However, despite the increasing number of offenders ageing behind bars, and although older offenders represent a unique opportunity to study different ageing trajectories, little research has been done with this population group so far.

5 Ageing in a changing society I 65 My research will contribute to extending the conception of ageing as a complex, diverse and longitudinal process. I hope that my results will shed some light on how previous life experiences shape medical, psychological and social outcomes in ageing. Finally, I would like my results to help in the creation of accurate and preventive intervention programmes and in the application of concrete actions such as adapting physical and social environments of prisons for the needs of this special ageing population.

6 66 I Ageing in a changing society References Brottsförebyggande rådet (BRÅ), (2018). The Prison and Probation Service. Retrieved from: https://www.bra.se/bra-in-english/home/crime- and-statistics/crime-statistics/the-prison-and-probation-service.html Corovic, J., Andershed, A. K., Colins, O. F., & Andershed, H. (2017). Risk factors and adulthood adjustment out-comes for different pathways of crime. In A. Blokland & V. van der Geest (Eds.), The Routledge International Handbook of Life-Course Criminology, (pp. 220–244). New York: Routledge. Di Lorito, C., V llm, B., & Dening, T. (2018). Psychiatric disorders among older prisoners: A systematic review and comparison study against olderӧ people in the community. Aging & Mental Health, 22(1), 1–10. Doi: 10.1080/13607863.2017.1286453 Fazel, S., Hope, T., O’Donnell, I., & Jacoby, R. (2004). Unmet treatment needs of older prisoners: A primary care survey. Age and Ageing, 33(4), 396–398. Doi: 10.1093/ageing/afh113 Fazel, S., Hayes, A. J., Bartellas, K., Clerici, M., & Trestman, R. (2016). Mental health of prisoners: Prevalence, adverse outcomes, and interventions. The Lancet Psychiatry, 3(9), 871–881. Doi: 10.1016/S2215- 0366(16)30142-0 Fazel, S., & Seewald, K. (2012). Severe mental illness in 33 588 prisoners worldwide: Systematic review and meta-regression analysis. The British Journal of Psychiatry, 200(5), 364–373. Doi: 10.1192/bjp.bp.111.096370 Ginn, S. (2012). Elderly prisoners. BMJ: British Medical Journal (Online), 345. Doi: 10.1136/bmj.e6263 Newton-Howes, G., Clark, L. A., & Chanen, A. (2015). Personality disorder across the life course. The Lancet, 385(9969), 727–734. Doi: 10.1016/S0140-6736(14)61283-6 O’Hara, K., Forsyth, K., Webb, R., Senior, J., Hayes, A. J., Challis, D., Fazel, S. & Shaw, J. (2016). Links between depressive symptoms and unmet health and social care needs among older prisoners. Age and Ageing, 45(1), 158–163. Doi: 10.1093/ageing/afv171

7 Ageing in a changing society I 67 Sampson, R. J., & Laub, J. H. (2001). A life-course theory of cumulative disadvantage and the stability of delinquency. In A. Piquero & P. Ma- zerolle (Eds.), Life-course criminology: Contemporary and classic readings (146–169). Toronto: Wadsworth. Spini, D., Jopp, D.S., Pin, S. & Stringhini, S. (2016). The multiplicity of aging: Lessons for theory and conceptual development from longitudinal studies. In V.L. Bengtson & R.A. Settersten (Eds.), Handbook of theories of aging (pp. 669–690). New York: Springer Publishing Com- pany.

8 68 I Ageing in a changing society Ageing with chronic pain: A life course perspective Christiana Owiredua

9 Ageing in a changing society I 69 2018). Not only that, they are also named among the leading cause of deaths in the adult population, especially among persons aged 65 and above in many countries. Further, a look at the leading conditions or diseases associated with ‘years lived with disability’ tells us that such chronic non- communicable diseases make up a great number of them, increasingly be- coming burdensome in the ageing population. ‘Years lived with disability’ refers to the conditions, illness or injury that lead to or come with significant functional loss in the lifespan of those affected. It is used in determining ‘years lost due to disability’, an indicator of the global, regional and national burden of diseases. Below, in Figure 1, a visual overview of estimating ‘years lived with disability’ is presented.

Figure 1: Visual overview of estimating Years Lived with Disability (YLD). Source: Public Health England (2015). Reproduced under Open Government Licence by Shah, Hagell and Cheung (2019).

10 70 I Ageing in a changing society be a leading cause of disability worldwide. Chronic pain is defined by the Internationalbe a leading Associ causeation of disability for the Study worldwide. of Pain Chronic (IASP) aspain pain is thatdefined persists by the pastInternational normal healing Associ timeation (Treede for the et Studyal, 2015) of Pain and (IASP)lasts or as recurs pain thatfor morepersists thanpast 3 tonormal 6 months healing (Merskey time (Treede & Bogduk, et al, 1994).2015) and Chronic lasts orpain recurs conditions for more arethan over 3-represented to 6 months in (Merskey the leading & Bogduk,causes of 1994). years li Chronicved with pain disability conditions in manyare ageover groups-represented (Vos etin al.,the 2016)leading. The causes table of belowyears lipresentved withs the disability top 10 in leadingmany cause age groupsof ‘years (Vos lived et with al., 2016)disability. The’ (numbered table below from present top 1s tothe 10) top in 10 theleading different cause age ofgroups ‘years. Thislived list with is createddisability out’ (numbered of 310 disease froms topand 1injuries to 10) in glothebally. different Further age, the groups colou. rThis in in list each is created box indicate out of an310 estimate disease sin and the injuries rate of glochangebally. between Further 2005, the coloand u2015r in in. each box indicate an estimate in the rate of change between 2005 and 2015 Table 1: The Ten Leading Causes of Age-Specific Years Lived with Disability in 2015Table. Source: 1: The Vos Ten et al. L (2016).eading Causes of Age-Specific Years Lived with Disability in 2015.

Source: Vos et al. (2016)

11 CHRISTIANA OWIREDUA Ageing AGINGin a changing AND CHRONIC society PAIN I 71 11

From Table 1, it can be observed that chronic pain conditions (mainly neck pain, back pain, migraine and other musculoskeletal disorders) are over represented in the list. It is intriguing that it is even present as early as ages 10- 14 and persist as late as ages 80 and above. By age 25, back and neck pain become the top leading cause of ‘years lived with disability’ and persist over the adult life span. Actually, it is projected that about 20% of the world’s population are living with chronic pain (Goldberg & McGee, 2011). From this it can be realised that, the age at which chronic pain problems begin varies for different people. That is, different groups of people are living with chronic pain at different points in their life and for varying durations. Hence, chronic pain can thus be seen as a lifespan problem with different life trajectories and situations regarding ageing within this population.

12 72 I Ageing in a changing society as well as targeting interventions. That is to say, different developmental periods or stages of being exposed to an unfavourable event with varying duration can also have different impact domains and/or magnitude, result- ing in a different life course for those affected. Also, it indicates that the individual’s own view of their life situation can have a significant impact on their future life course through the decisions and options they perceive to be available. From this theory, the life stage of onset and duration of exposure of chronic pain can thus be seen as important in understanding the dynamics in the subgroups of people living chronic pain. That is, the age of chronic pain onset and its associated functional limitations can vary the psychosocial experience through the different life course accumulation of risks and expectancies. As such, persons with different life trajectories of chronic pain onset are likely to have different life situations, risks and experiences. Although studies on managing chronic pain are ongoing, until recently, the approaches adopted gave the impression of homogeneity in this population. The idea of applying a life course perspective has recently been raised to allow for understanding the processes over the life course rather than distinct stages that dominate the field (Walco, Krane, Schmader & Weiner, 2016). Further, the majority of the few works which apply a life course perspective to chronic pain are epidemiological studies exploring the prevalence and incidence of chronic pain in the population. The works within the psychosocial aspects of chronic pain have mainly centred on which factors are involved in chronic pain development (Hartvigsen et al., 2004; Blyth et al., 2007). However, the reverse is also important. That is, what are the life trajectories of people living with chronic pain in a life course perspective with regards to their psychosocial outcomes?

13 Ageing in a changing society I 73

74 I Ageing in a changing society References Blakeney, P. E., Rosenberg, L., Rosenberg, M., & Fauerbach, J. A. (2007). Psychosocial recovery and reintegration of patients with burn injuries. In D. A. Herndon (Ed.), Total burn care (pp. 829-843). Elsevier Inc. Blyth, F. M., Macfarlane, G. J., & Nicholas, M. K. (2007). The contribution of psychosocial factors to the development of chronic pain: the key to better outcomes for patients? Pain, 129(1), 8-11. Center for Disease Control (2013). Overview of Non communicable Dis- eases and Related Risk Factors https://www.cdc.gov/glob- alhealth/healthprotection/fetp/training_modules/new-8/Overview-of- NCDs_PPT_QA-RevCom_09112013.pdf Ferraro, K. F., & Shippee, T. P. (2009). Aging and cumulative inequality: How does inequality get under the skin? The Gerontologist, 49(3), 333-343. Goldberg, D. S., & McGee, S. J. (2011). Pain as a global public health priority. BMC Public Health, 11(1), 770. Hartvigsen, J., Lings, S., Leboeuf-Yde, C., & Bakketeig, L. (2004). Psy- chosocial factors at work in relation to low back pain and consequences of low back pain; a systematic, critical review of prospective cohort studies. Occupational and environmental medicine, 61(1), e2- e2. Merskey, H., & Bogduk, N. (1994). Classification of chronic pain, IASP Task Force on Taxonomy. Seattle, WA: International Association for the Study of Pain Press .Also available online at www. iasp-painorg Treede, R. D., Rief, W., Barke, A., Aziz, Q., Bennett, M. I., Benoliel, R. & Giamberardino, M. A. (2015). A classification of chronic pain for ICD-11. Pain, 156(6), 1003. Vos, T., Allen, C., Arora, M., Barber, R. M., Bhutta, Z. A., Brown, … & Coggeshall, M. (2016). Global, regional, and national incidence, prevalence, and years lived with disability for 310 diseases and injuries, 1990–2015: A systematic analysis for the Global Burden of Disease Study 2015. The Lancet, 388(10053), 1545-1602.

15 Ageing in a changing society I 75 Walco, G. A., Krane, E. J., Schmader, K. E., & Weiner, D. K. (2016). Ap- plying a lifespan developmental perspective to chronic pain: Pediatrics to geriatrics. The Journal of Pain, 17(9), T108-T117. World Health Organization. (2018). WHO global coordination mecha- nism on the prevention and control of noncommunicable diseases: Fi- nal report: WHO GCM (No. WHO/NMH/NMA/GCM/18.12). World Health Organization.

16 76 I Ageing in a changing society CHAPTER 3 Ageing and the fourth industrial revolution

Habit recognition in smart homes for people with dementia Gibson Chimamiwa

GIBSON CHIMAMIWA Habit recognition in smart homes for people with de- 9 mentia Ageing in a changing society I 79

Figure 1. Dementia stages

10 GIBSON CHIMAMIWA Habit recognition in smart homes for people with dementia 80 I Ageing in a changing society environmental sensors, wearable sensors and video-based sensors. Environ- mental sensors such as motion sensors are used to detect the movement of people in a particular location. Wearable sensors include accelerometers to measure the velocity of movements or heart-rate sensors to measure the heart-beat. Video-based sensors include cameras to monitor the type of activity an individual is involved in at any given instance. The use of sensor systems has been applied in several domains including health-care, sports, and security and surveillance. Each application area uti- lises a set of preferred sensor devices that are relevant for the specific task at hand. In particular video cameras are more prevalent in security and surveillance domain while physiological sensors such as ECG to measure heart- rate are more applicable in the medical and sporting domains. Other issues that determine the applicability of sensor devices are ease of use and privacy. In particular, due to privacy concerns, the use of video cameras to monitor the activities of individuals in their home environments or patients in health care centres is considered intrusive. At the same time attaching wearable sensors on dementia patients may cause them a lot of discomfort and anxiety. Activity recognition is classified into knowledge-driven and data-driven approaches. The activities are recognised either by extracting patterns from large volumes of data (data-driven approach) or by capturing contextual information based on prior domain knowledge and then applying reasoning based on the contextual information (knowledge-driven approach). Data-driven approaches are more reliable in dealing with large amounts of data and therefore scale better. Due to this scalability, they promise to offer a solution for the habit recognition task, which depends on long-term observation. However, data-driven solutions depend on the availability of large quantities of good data. In other words, it takes time to learn the behaviours of patients. On the other hand, data-driven approaches are not generalisable enough and hence are not reusable when the patient or the environment changes. Knowledge-driven approaches rely on the availability of domain experts and make it straightforward to include contextual information or general medical knowledge for specific situations in decision-making processes. However, handling uncertainty using knowledge-driven methods is not ef- ficient. In practice, it is intractable to predict and model all the possible ways in which each patient performs activities. The way in which one user pre- pares a meal are different from another user. Therefore, it is not feasible to

GIBSON CHIMAMIWA Habit recognition in smart homes for people with de- 11 mentia Ageing in a changing society I 81 model all the behaviours of each individual patient in terms of rules in the knowledge model. To avoid the difficulty of relying on a human expert to model all details of how individuals perform activities, the focus is shifted towards ’letting the data talk to us’. In particular, using statistical or machine learning algo- rithms, we aim to analyse the wealth of data from patient activities to capture the habits and changes in habits which we can use to enrich our prior knowledge of how individuals usually perform their activities. Hence, we achieve a solution which is personalised to meet the specific needs of dementia patients.

12 GIBSON CHIMAMIWA Habit recognition in smart homes for people with dementia 82 I Ageing in a changing society Conclusion People with dementia experience cognitive decline along the developmental stages of the disease. The decline in memory triggers changes in the habits of patients. Human habit recognition assists in capturing patients’ habits as well as changes in the habits. The changes in habits could provide indicators regarding the stage of dementia the patient is moving towards. In this way, the progression to late-stage dementia can be slowed by providing interventions such as early treatment of the disease or other recommendations. The ability to provide early interventions would enable the patients to remain in their preferred environments for a longer time, which also reduces societal costs.

GIBSON CHIMAMIWA Habit recognition in smart homes for people with de- 13 mentia Ageing in a changing society I 83 References Amiribesheli, M., & Bouchachia, H. (2018). A tailored smart home for dementia care. Journal of Ambient Intelligence and Humanized Com- puting, 9(6), 1755–1782. Lin, Q., Zhao, W., & Wang, W. (2018). Detecting dementia-related wandering locomotion of elders by leveraging active infrared sensors. Jour- nal of Computer and Communications, 6(05), 94. Prince, M., Wimo, A., Guerchet, M., Ali, G., Wu, Y., & Prina, M. (2015). World alzheimer report 2015–the global impact of dementia, an analysis of prevalence, incidence, cost and trends. Alzheimer’s Disease Inter- national, 17, 2016. Reisberg, B., Ferris, S., de Leon, M., & Crook, T. (1982). The global dete- rioration scale for assessment of primary degenerative dementia. The American journal of psychiatry, 139(9), 1136. Thompson, M. (2014). Occupations, habits, and routines: perspectives from persons with diabetes. Scandinavian journal of occupational ther- apy, 21(2), 153–160. Tiberghien, T., Mokhtari, M., Aloulou, H., & Biswas, J. (2012). Semantic reasoning in context-aware assistive environments to support ageing with dementia. In International semantic web conference (pp. 212– 227). Woods, R., Moniz-Cook, E., Iliffe, S., Campion, P., Vernooij-Dassen, M., Zanetti, O., & INTERDEM (Early Detection and Intervention in De- mentia) Group. (2003). Dementia: issues in early recognition and intervention in primary care. Journal of the Royal Society of Medicine, 96(7), 320–324.

14 GIBSON CHIMAMIWA Habit recognition in smart homes for people with dementia 84 I Ageing in a changing society Universal evidence-based design: How can new technologies support design for ageing? Vasiliki Kondyli

Figure 1. a. Vitruvian man (Leonardo da Vinci, 1490), b. Modulor (Le Corbusier, 1943, c. A people-centred approach that focuses on people’s individual needs and abilities (author).

Ageing in a changing society I 85

86 I Ageing in a changing society

Ageing in a changing society I 87

Figure 2. Left to right: Eye-tracking data analysis from the case study in the railway station in Bremen (Kondyli & Bhatt, 2018); Eye-tracking data and the set-up from the VR case study.

88 I Ageing in a changing society Figure 3: An overview of the current knowledge on the issues related to ageing and a sample ofFigure design 3 interventions. An overview that of can the be current considered knowledge from an evidenceon the issues-based relateddesign point to ageing of view. and a sample of design interventions that can be considered from an evidence-based stimulationdesign point ofprovided, view. can contribute to an independent and stimulating living environment for older users. Using these insights, an evidence-based design (EBD) approach means a more reliable anticipation of the changes For instance, empirical studies show that healthy ageing leads to cognitive occurring due to ageing and provides adaptive or universal design solutions. and behavioural changes as a result of neurofunctional changes in brain structures. Spatial cognition is founded on brain structures that are particu- For instance, empirical studies show that healthy ageing leads to cognitive larly vulnerable to ageing. For example, the fact that older people tend to andhave behavioural difficulties inchanges learning as a a new result route of orneurofunctional performing shortcuts changes in in known brain structures.paths is valuable Spatial forcognition designing is founded routes onand brain signage structures on public that buildingsare particu as- larlywell vulnerableas specialis edto ageing.spaces suchFor example,as care cent the rfactes, community that older peoplecentre stend etc. toIn havethis area,difficulties there inis alearning range ofa newcompleted route or and performing ongoing shortcutsbehavioural in knownstudies pathsfocusing is valuableon the spatial for designing features androutes their and implications signage on for public various buildings groups asof

Ageing in a changing society I 89 older adults, as is the prevention of glare, appropriate lighting conditions, colour and contrast regulations for visual acuity and perceptual changes, etc. (Figure 3). This knowledge gives a new perspective to the definition of universal design principles that takes into consideration the various needs that emerge with ageing.

90 I Ageing in a changing society

Ageing in a changing society I 91 conflicting principles throughout the design process. Further work is required to translate more and more universal design principles from the empirical work as well as to promote the technological development that can support the interplay between these principles in the design arena.

92 I Ageing in a changing society

Ageing in a changing society I 93

Implications of ageing for the design of cognitive interaction systems Lucas Morillo-Mendez

MORILLO – MENDEZ LUCAS 1 Ageing in a changing society I 95 dedicatedin equal conditions servers for (Coverly, older players 2019) will. This be iscreated a good for example everyone of olderto compete adults inbeing equal able conditions to enjoy (Coverly, new technologies 2019). This already is a good available example for everybodyof older adults else. beingPurely able assistive to enjoy technologies new technologies do not have already to be available the only meansfor everybody of increasing else. Ptheirurely quality assistive of technologieslife. do not have to be the only means of increasing their quality of life.

FigureFigure 1 . 1PARO. PARO the sealthe isseal a real is examplea real example of technology of technology for providing for companionship providing companion-to older adults. Source: Master of None series, Netflix (2015). ship to older adults. Source: Master of None series, Netflix (2015).

Getting older in the fourth industrial revolution DespiteGetting the older number in the of fourthpossibilities industrial ahead rofevolution us, the co -occurrence of this elongationDespite the in number the lifespan of possibilities and the fourth ahead industrial of us, therevolution co-occurrence has a concrete of this negativeelongation aspect. in the I lifespan will briefly and thtrye fourthto illustrate industrial it with revolution a personal has aanecdote concrete relatednegative to aspect.one of Ithe will older brief adultly trys I topersonal illustrately appreciate it with a personalmost, which anecdote hap- pensrelated to beto onemy father.of the olderI remember adults thatI personally one time appreciate while in elementary most, which school hap- duringpens to the be 90s,my father.when II was remember around that nine one years time old, while I asked in elementary him: school during‘Dad, the why 90s, don’t when we Ihave was Iaroundnternet? nine Some years friends old, haveI asked it at him: home and they can use‘ -iDad,t for whythe writingsdon’t we wehave have Internet? to do Somefor school friends.’ have it at home and they His answercan use imightt for the sound writings shocking we have today to do. ‘forWhy school would.’ you want that? We have an encyclopedia if you want to consult any information.’ His answer might sound shocking today: I would not say that my father was being ignorant, a judgement that can be easily‘-Why made would from you our want modern that? perspective.We have an encyclop From myedia point if you of want view to, consult I find it easierany to informationsee that the.’ world around himself was already moving too fast, andI would catching not say up thatis not my always father easy was. Inbeing that ignorant, time, my a father judgement and many that can other be peopleeasily madecould from not seeour how modern the Iperspective.nternet had Fromalready my started point ofto view make, I thatfind ait physicaleasier to encyclopedia see that the worldor a newspaper around himself feel analog was uealready or outdated moving. Luckily,too fast, afterand catchingsome time up he is changednot always his easymind. Inand that we time, got an my Internet father connectionand many other that people could not see how the Internet had already started to make that a

96 I Ageing in a changing society physical encyclopedia or a newspaper feel analogue or outdated. Luckily, after some time he changed his mind and we got an Internet connection that he is using on a daily basis. This anecdote serves to illustrate something: nowadays, the feeling of the world being constantly ahead of us is perma- nent and more relevant than ever before, especially from a technological perspective. We are living longer than before while we are subject to a fast- paced rhythm in a world where the feeling of being left behind starts as soon as we blink for a second. If this is hard for all of us, close your eyes and imagine for a moment how complicated it can get for older adults to keep track. But there are reasons to be optimistic, at least from the technological perspective. We are currently immersed in what has been called the fourth industrial revolution, a period when the appearance of ground-breaking technologies is constantly challenging and moulding our way of living. If we stop and think about how this period could improve the lives of an ageing population and we design new technologies taking into consideration their needs, our future needs, it will be possible that nobody feels left behind. We will try to turn the double-edged sword of a continuously developing strange technology into an inclusion tool. For example, right now the topic of autonomous driving cars is being sold in terms of the ‘comfort’ of being able to do something other than driving, and in terms of ecology, safety and in terms of power and status (as every expensive car is in reality). Appar- ently, someone has forgotten that autonomous driving has the potential and of enhancing the independence of people with reduced mobility or cognitive decline. With knowledge and good will, innovative technology adapted for the needs of older people could be designed. In the beginning of the 21st century, we have witnessed the development of some interdisciplinary areas of knowledge concerned with empowering the end user, such as informatics, ergonomics or human-machine interaction (HMI), so there are reasons to believe that technology development companies will consider this knowledge. At the end of the day, extending the range of potential users would also have an impact on their benefits.

MORILLO – MENDEZ LUCAS 3 Ageing in a changing society I 97 Asking people their opinion about a technology is the most straightforward way of gathering valuable information, and in fact it is traditionally associated with the world of marketing. Focus groups or interviews are familiar concepts that we associate with testing a product, but on some occa- sions, for opinions to be valid and solid, the product should be in a post- development phase that allows for it to be tested (or at least it should be somehow familiar to the user). When this is not the case, when opinions are based on predefined ideas, results should be taken with caution: my opinion about autonomous driving might be biased towards the idea that the car will take care of everything and I will be able to take splendid naps, while another person might think that autonomous driving is the synonym of a four-wheeled coffin. While testing it on a safe ground and controlled environment (simulator, virtual reality, closed circuit, etc.) and basing our opinions on that experience is a possibility, this approach implies designing a prototype that might be far from the final product. Even though it is not the ideal, it is hard to deny that these kinds of tests may be helpful for the im- mediate steps of the design. However, opinions are subjective and there is more valuable information that can be gathered that the person testing the system is not aware of. In a risk assessment experiment, independent of the opinion of how dangerous the participant thinks a certain situation could be, we can gather other external information such as whether the participant was watching the information that announced danger by means of tracking their gaze. Imagine an autonomous car that suddenly disconnects. It is possible that some opinions about this event do not reflect the danger of the situation, and at the same time, there is a possible scenario in which the situation is dangerous indeed. This paradoxical situation may occur if the alert of disconnection is so sub- tle that the person does not see it, making it a dangerous situation despite subjective opinions. This objective perspective is more related to cognitive psychology and how academics work, but the situations and scenarios used in this type of research might be even further away from real technologies than the prototypes the industry works with. Cognitive psychology, the branch of psychology that studies how humans perceive, interpret and interact with the world, has traditionally used rather artificial scenarios and stimuli. Findings that have been found in a laboratory, using basic shapes and sounds and all kinds of controlled stimuli, are not easily generalisable to specific real tasks because the world is more complex than these settings. These two ways of gathering information are not mutually exclusive and they can complement each other. Nevertheless, given the advances in new

4 98 I Ageing in a changing society tools of research in cognition (e.g. physiological measures for heart rate or skin temperature, eye-tracking or neuroimage techniques that allow us to correlate internal states with brain activity) and the rapid growth of CISs, the disciplines of cognitive psychology and computer science are right now focused on each other. Because of the novelty and the youth of the HMI field, it is complicated to determine the extent to which previous findings in cognitive psychology are applicable to these new scenarios. The main focus of this research is to apply new paradigms of cognitive psychology in order to design better CISs for older adults. The next section enumerates some characteristics of human cognition and perception with the aim of clarifying the potential impact of cognitive psychology on the design of these new technologies. However, even if it won’t be its main focus, this research can also be complemented with qualitative questionnaires to gather opinions. After all, what is the point of creating something we are sure is effective if people just don’t like it?

MORILLO – MENDEZ LUCAS 5 Ageing in a changing society I 99 the service of real interactions with the environment (for a review, see Wil- son, 2003). Our ideas and thoughts of the world exist as a result of contin- uous interactions with our surrounding environment, and our ability to process that information exists for interacting with this environment once again. In conclusion, cognition and perception are not closed and isolated processes: we receive input from the external world while we are interacting with it in a never-ending loop. Beyond physical attributes and genetic factors, different groups of people who have been exposed to different environments might have different cognitive strategies to make sense of the world. This is the reason why individual differences between groups of users based on age, gender or cultural background must be taken into consideration when studying cognition for designing purposes. In the case of ageing, we also know that some aspects of cognition decline naturally, so identifying them in order to learn how can they affect interaction with a specific system is a good way of starting to take older adults into account.

6 100 I Ageing in a changing society Applying cognition to design I will use autonomous driving one last time as an example of a CIS older adults can benefit from. Despite autonomous driving being a reality, these systems are not fully ready for total automation and there is a human com- ponent that is still very important. This is because the autonomous driving function is not capable of solving every situation and manual control can be required at any point. Some questions that follow could be: What is the best way to indicate that the driver has to regain control? How can we make it sure that the driver does not trust blindly in the system so they do not disengage completely from the supervision task? These questions are not new, but they are investigated with a general population in mind. If we think specifically about older adults, the main logic would be the following: Autonomous driving has potential benefits for older adults, for example, enabling them to regain some independence by leaving home more often if they so desire. Autonomous driving could be particularly dangerous for older adults if their needs are not taken into account, which would also make them unwilling to use these types of systems. This turns a potential chance for independence into something to avoid. We could investigate what older adults need in this particular context and how to maximise benefits and reduce disadvantages that using these systems may have for them. In a driving simulator study, Ramkhalawansingh , Keshavarz, Haycock, Shahab and Campos (2016) showed that there are cognitive differences between young drivers and old drivers in the way that they integrate visual and auditive information. Participants of the study were told to drive at 80km/h, but after some time, the speedometer disappeared and they had to maintain that speed. Results showed that older adults were able to maintain their speed more easily than younger drivers when sounds of wind and en- gine were congruent with the driving image on the screen. Considering these results, one possible next step and question of research applied to autonomous driving could be: Is it possible that older adults would react faster to a disconnection that alerts the driver with a sound and image that are somehow congruent to each other than they would to another type of alert? That is a possibility that might be worth exploring, but this is just one of the infinite examples of how useful it could be to apply cognitive psychology to design, taking into account individual differences.

MORILLO – MENDEZ LUCAS 7 Ageing in a changing society I 101 Conclusion The age increase of the world population is occurring in parallel to the fast-paced development of new interactive technologies. Instead of turning these new systems into a source of frustration and potential danger for older adults, now we have the chance to study these adults’ cognitive idiosyncra- sies so they can make the best of the new technologies in terms of security and acceptability. Beyond opinion, we need to study those objective factors that humans are not necessarily aware of from the perspective of cognitive psychology. To do this, we must ensure that we experiment with participants under naturalistic and multimodal conditions that are easily generalisable to the type of potential interaction with the system that will be designed.

8 102 I Ageing in a changing society References Coberly, C (2019, September). 89-year-old “Gaming Grandma” plays video games to stave off dementia and entertain fans. Retrieved from TechSpot website: https://www.techspot.com/news/82043-89-year-old- gaming-grandma-plays-video-games.html Cognitive Human-Computer Interaction—IBM. (n.d.). Retrieved from researcher.watson.ibm.com/researcher/view_group.php Raschke, M. (2016, August 16). Eye tracking: the next big thing for automatic driving. Retrieved from Visual Computing BLOG website: https://www.visual-computing.org/2016/08/16/eye-tracking-the-next- big-thing-for-automatic-driving/ Ramkhalawansingh, R., Keshavarz, B., Haycock, B., Shahab, S., & Campos, J. L. (2016). Age differences in visual-auditory self-motion perception during a simulated driving task. Frontiers in Psychology, 7. Risko, E. F., & Kingstone, A. (2017). Everyday attention. Canadian Journal of Experimental Psychology/Revue Canadienne de Psychologie Expérimentale, 71(2), 89–92. Wilson, M. (2003). Six views of embodied cognition. Psychonomic Bulletin & Review, 9, 625–636.

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Internet of things for improving older adults’ quality of life Gomathi Thangavel

Ageing in a changing society I 105 from various literatures and concluded that QoL is ‘a dynamic, multi-level and complex concept, reflecting objective, subjective, macro-societal, and micro-individual, positive and negative influences, which interact together.’ (Brown, Bowling, & Flynn, 2004)

106 I Ageing in a changing society ability to sense and manipulate an environment in real time. When IoT is used alongside other technologies, like machine learning and big data, it can facilitate real-time monitoring, analysis and decision-making. If we are to loosely compare these technologies to the human body, IoT can be the neu- ral system; big data, the brain; and machine learning, the mind, or intelligence. Today, our everyday appliances are getting ‘smart’, sensors are getting cheaper, and hence IoT solutions that link them are being developed at a rapid phase (Majumder et al., 2017). The true potential of IoT has not been realised yet. However, the impact of IoT in business, industries and daily life is expected to be profound and to positively affect how some businesses, for example, health care and man- ufacturing, function currently. It is also expected to open doors to new businesses in areas related to smart cities, home automation and service industries. So far, the benefits and advantages understood, and the expectations we have about it, are merely the tip of the iceberg. These expectations and possibilities of IoT seem to be the driving force behind much of the research carried out on this topic, both by academia and industry.

Ageing in a changing society I 107 Previous review (Soro, Ambe, & Brereton, 2017) on IoT and ageing high- lighted that most of the IoT ageing studies were designed mainly from a technical perspective and less from a human perspective. End-user usability and accessibility were ignored in most of the studies (Baig et al., 2019). Studies did not engage the older adults in understanding their needs and did not include their views in their design process. Older people are described as a heterogeneous group, having complicated and diverse user requirements, and this stands as one of the challenges in developing and deploying IoT-based solutions among older populations (Xing, Peng, Liang, & Jiang, 2018). The above discussion reflects the benefits of using IoT for improving older adults’ QoL and highlights the pitfalls of ignoring the main issues and challenges. Therefore, this study will address those research challenges and approach the problem by including the older adults in all phases of IoT design.

108 I Ageing in a changing society symptoms in public, and this affects their ability to engage in social activities. As a result, they become socially isolated, which in turn causes other health-related issues like depression, cognitive decline etc. (Angulo et al., 2019). Due to the characteristics of Parkinson’s disease, spouses of older adults who are the primary caregivers are also affected in terms of engaging socially as couples (Roland, Jenkins, & Johnson, 2010). So it becomes very important to understand the social-related issues in relation to older adults with Parkinson’s disease and design solutions to improve their quality of life.

Ageing in a changing society I 109 References Angulo, J., Fleury, V., Péron, J. A., Penzenstadler, L., Zullino, D., & Krack, P. (2019). Shame in Parkinson’s disease: A Review. Journal of Parkinson’s disease, (Preprint), 1-11. Ashton, K., (2009). That ‘internet of things’ thing. RFID Journal, 22(7), 97–114. Baig, M. M., Afifi, S., GholamHosseini, H., & Mirza, F. (2019). A systematic review of wearable sensors and IoT-based monitoring applications for older adults: A focus on ageing population and independent living. Journal of Medical Systems, 43(8), 233. Brown, J., Bowling, A., & Flynn, T. (2004). Models of quality of life: A taxonomy, overview and systematic review of the literature. European Forum on Population Ageing Research. Bowling, A., Gabriel, Z., Dykes, J., Dowding, L. M., Evans, O., Fleissig, A., ... & Sutton, S. (2003). Let's ask them: A national survey of definitions of quality of life and its enhancement among people aged 65 and over. The International Journal of Aging and Human Develop- ment, 56(4), 269–306. Den Oudsten, B. L., Van Heck, G. L., & De Vries, J. (2007). Quality of life and related concepts in Parkinson’s disease: A systematic review. Movement Disorders: Official Journal of the Movement Disorder Society, 22(11), 1528–1537 Farquhar, M. (1995). Elderly people’s definitions of quality of life. Social Science & Medicine, 41(10), 1439–1446. Majumder, S., Aghayi, E., Noferesti, M., Memarzadeh-Tehran, H., Mondal, T., Pang, Z., & Deen, M. J. (2017). Smart homes for elderly healthcare: Recent advances and research challenges. Sensors, 17(11), 2496. Nazzi, E., & Sokoler, T. (2011, August). Walky for embodied microblog- ging: Sharing mundane activities through augmented everyday objects. In Proceedings of the 13th International Conference on Human Com- puter Interaction with Mobile Devices and Services (pp. 563-568). ACM.

110 I Ageing in a changing society Reeve, A., Simcox, E., & Turnbull, D. (2014). Ageing and Parkinson’s disease: Why is advancing age the biggest risk factor? Ageing Research Reviews, 14, 19–30. Roland, K. P., Jenkins, M. E., & Johnson, A. M. (2010). An exploration of the burden experienced by spousal caregivers of individuals with Parkinson’s disease. Movement Disorders, 25(2), 189-193. Schrag, A., Jahanshahi, M., & Quinn, N. (2000). How does Parkinson’s disease affect quality of life? A comparison with quality of life in the general population. Movement Disorders: Official Journal of the Movement Disorder Society, 15(6), 1112–1118. Soro, A., Ambe, A. H., & Brereton, M. (2017). Minding the gap: Recon- ciling human and technical perspectives on the IoT for healthy ageing. Wireless Communications and Mobile Computing, 2017. Swedish Neuro Registries – Parkinson Stats (n.d.) Retrieved from https://neuroreg.se/en.html/parkinsons-disease. Tesch-Roemer C. Active ageing and quality of life in old age (2012) [Inter- net]. Geneva: United Nations Economic Commission for Europe (UNECE), Retrieved October 20, 2019 from http://www.dza.de/filead- min/dza/pdf/2012_Active_Ageing_UNECE.pdf Van Leeuwen, K. M., Van Loon, M. S., Van Nes, F. A., Bosmans, J. E., De Vet, H. C., Ket, J. C., ... & Ostelo, R. W. (2019). What does quality of life mean to older adults? A thematic synthesis. PloS one, 14(3), e0213263. WHOQOL: Measuring Quality of Life. (2014, March 11). Retrieved Oc- tober 20, 2019, from https://www.who.int/healthinfo/survey/whoqol- qualityoflife/en/ Xing, F., Peng, G., Liang, T., & Jiang, J. (2018, July). Challenges for deploying IoT wearable medical devices among the ageing population. In International Conference on Distributed, Ambient, and Pervasive In- teractions (pp. 286-295). Springer, Cham.

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CHAPTER 4 Ageing from a societal perspective

Learning in older age Hany Hachem

HANY HACHEM Learning in Older Age 9 Ageing in a changing society I 115 were also formed; they combined features from the original French and Brit- ish models. These newly formed models are characteristic of North America in the USA and Canada, where U3As are referred to as Learning in Retire- ment Institutes (Swindell & Thompson, 1995). The movement reached all the corners of the world, Australia, New Zealand, China and Japan, North- ern and Southern Europe, South America and the Middle East. These educational centres are found in developing and developed nations, with a common vision to satisfy the interests and learning needs of older adults so they remain productive and active contributors in their communities (Mehrotra, 2003), or so they claim!

One autonomy-driven philosophy is the humanist one championed by Knowles (1970), another critical-emancipatory one is championed by Freire

HANY HACHEM Learning in Older Age 10 116 I Ageing in a changing society (1972). Somewhere in between lurks Mezirow’s (1995) critical-humanist approach. This approach focuses on individuals and their differences seen from psychological and personality points of views rather than from sociological and power-related perspectives. Hence, the biggest tension remains between the humanist and the critical-emancipatory approaches, and that is why I present these two philosophies. The first currently dominates educational gerontology, while the second is proposed as a catalyst of social change. To answer philosophical questions about learning from humanist and critical-emancipatory points of view, I will highlight the main points where these views flagrantly diverge. The purpose of education from a humanist perspective is personal fulfilment, where educators are seen as tech- nicians who deliver information to their learners, who also need to teach themselves. The dominant worldview is psychological, and differences between older learners are generic (Tisdell & Taylor, 2000). On the other side, the critical-emancipatory approach believes that social change is the goal of older-adult education, where teachers are leaders and liberators who aim to prepare modern-day activists. The general worldview is rational/sociological and observes the differences among older adult learners from a class perspective (Tisdell & Taylor, 2000).

HANY HACHEM Learning in Older Age 11 Ageing in a changing society I 117 principle is the need for a critical educational gerontology that operates in the interests of older adults themselves. It should not be seen as a subject like medicine nor as a miraculous cure for the lack of critical reflection, but as an ideological approach to the theory and practice of moral education for older adults. The third principle speaks of the evident relationship between critical educational gerontology and concepts like empowerment, emancipation, transformation, social and hegemonic control and conscientisation (Freire, 1972). Finally, the fourth principle highlights that critical educational gerontology is predicated on the notion of praxis, fostering a dialectal relationship between theory and practice. Therefore, there needs to be a critical geragogy, which refers to learning and teaching in relation to older people. This praxis, that is, critical geragogy, would be the articulation of critical educational gerontology principles. Formosa (2002) devised seven critical geragogy principles (Figure 1), which ought to be a practical translation of the critical educational gerontology principles:

Critical Geragogy Principles

Figure 1. Critical geragogy principles.

HANY HACHEM Learning in Older Age 12 118 I Ageing in a changing society gerontology but falling back into line with the humanistic, liberal intrinsic purposes of all educational processes’ (p. 38). For him, education for older people should be no different from that for any age group, since learning is an intrinsic quest par excellence. To humanists, it is an overarching claim to consider that all older people are powerless and lack freedom, and therefore it is not valid to require that education be all about empowerment and emancipation. Moreover, to humanists, the critical approach seems to be full of an intrinsic and extrinsic mix of statements about education, and empirical claims about older people’s feelings and convictions. Percy (1990) disbelieves in the role of teachers in achieving the goal of critical educational gerontology, which is empowerment and emancipation. To him, the roles of the insurance company, the police officer and the social worker, for instance, are more important. Percy went on to condemn the claimed superi- ority of teachers in the sense that their worldview is more accurate than their students’, and hence that they have the right and duty to transform their students’ views through the learning process. He asked, ‘can students opt to remain complacent?’ (p. 235), obviously hinting at the inability of older adults to follow their interests under critical educational gerontology educators. Percy went even further in advising older adult educators to acknowledge that they will fail to achieve their goals until the world changes around them. In any case, what teachers have to offer seems exchangeable with the wisdom of any experienced and ‘wise’ older adult. Simply put by him: ‘a society which uses the experience of older people as an educative resource is also making a contribution to the self-fulfilment of those older people’ (p. 238). With the toned-down role of educators, we conclude the second restatement of the principles of educational gerontology.

HANY HACHEM Learning in Older Age 13 Ageing in a changing society I 119 pedagogical traditions are also cherished in Formosa’s third statement. Crit- ical educational gerontology should provide a transformative rationale by which social inequalities are uncovered and dealt with. This should happen with the help of ‘educators’ and not facilitators who not only are knowl- edgeable but also invite their students to reach new horizons. Thirdly, educational gerontology should promote listening, love and tolerance with the aim of increasing solidarity and fruitful dialogue among learners. Finally, a revolutionary praxis takes place when older adults are engaged in age-related social movements by founding them and reaching out through alli- ances with other like-minded groups.

HANY HACHEM Learning in Older Age 14 120 I Ageing in a changing society References Baars, J. (1991). The challenge of critical gerontology: The problem of social constitution. Journal of Aging Studies, 5(3), 219–243. Boulton-Lewis, G. M., Buys, L., & Lovie-Kitchin, J. (2006). Learning and active aging. Educational Gerontology, 32(4), 271-282. Formosa, M. (2002). Critical geragogy: Developing practical possibilities for critical educational gerontology. Education and Ageing, 17(1), 73– 86. Formosa, M. (2011). Critical educational gerontology: A third statement of first principles. International Journal of Education and Ageing, 2(1), 317–332. Formosa, M. (2019). Active ageing through lifelong learning: The Univer- sity of the Third Age. In Formosa M. (Ed.) The University of the Third Age and active ageing (pp. 3–18). Springer, Cham. Freire, P. (1972). Pedagogy of the oppressed. New Zealand: Penguin Books. Glendenning, F. (2001). Education for older adults. International Journal of Lifelong Education, 20(1–2), 63–70. Glendenning, F., & Battersby, D. (1990). Why we need educational gerontology and education for older adults: A statement of first principles. In F., Glendenning & K., Percy (Eds.), Ageing, education and society: Readings in educational gerontology, (pp. 219–231). Keele, Stafford- shire: Association for Educational Gerontology. Hori, S., & Cusack, S. (2006). Third-age education in Canada and Japan: Attitudes toward aging and participation in learning. Educational Gerontology, 32(6), 463–481. Knowles, M. S. (1970). The modern practice of adult education: Andra- gogy versus pedagogy. New York: Cambridge Books. Mehrotra, C. M. (2003). In defense of offering educational programs for older adults. Educational Gerontology, 29(8), 645–655. Mezirow, J. (1995). Transformation theory of adult learning. In M. R. Welton (Ed.), In defense of the lifeworld (pp. 39–70). New York, NY: SUNY Press.

HANY HACHEM Learning in Older Age 15 Ageing in a changing society I 121 Percy, K. (1990). The future of educational gerontology: A second statement of first principles. In F. Glendenning & K. Percy (Eds.), Ageing, education and society: Readings in educational gerontology, (pp. 232– 239). Staffordshire. Association for Educational Gerontology. Peterson, D. A. (1976). Educational gerontology: The state of the art. Educational Gerontology, 1(1), 61–68. Swindell, R., & Thompson, J. (1995). An international perspective on the University of the Third Age. Educational Gerontology: An Inter- national Quarterly, 21(5), 429–447. Tisdell, E. J., & Taylor, E. W. (2000). Adult education philosophy informs practice. Adult Learning, 11(2), 6–10.

HANY HACHEM Learning in Older Age 16 122 I Ageing in a changing society From theory to practice: Toward advocacy in social work practice to better address abuse of older people in developing countries Charles Kiiza Wamara

FORNAME SURNAME Title of the thesis (or part of title) 9 Ageing in a changing society I 123 en across the globe. Abuse of older people is associated with the collapse of the family system and the current crisis of neoliberal capitalism. Whilst cases of abuse of older people are increasing in number, there seems to be limited social work action tackling this social ill. Most interventions for older people are embedded within conventional approaches such as remedial, maintenance, counselling and case management models that do not adequately address social problems of a structural nature. To that end, this chapter argues that such approaches cannot address abuse of older people because they can only address symptoms of the problem rather than the root causes. In view of the limitations of conventional social work approaches, I advance the need for social work to adopt advocacy to effectively address the problem of abuse of older people in developing countries. Advocacy in social work strives to influence the behaviour of decision-makers and improve their responsiveness to the needs of marginalised groups (see Allan, 2009). It involves working with or on behalf of the disadvantaged groups to influence decisions that concern them. It also involves interventions that aim at practice and policy change or development. Social work advocacy is appropriate when a certain social group is discriminated against and abused by privileged social groups. Unlike traditional social work approaches, advocacy improves the human capabilities of marginalised groups to act on their own behalf and hold decision makers to account for their actions and inactions.

10 FORNAME SURNAME Title of the thesis (or part of title) 124 I Ageing in a changing society second, challenging social stratifications and demarcations that perpetuate discrimination and injustice in society. As stated earlier, for social work to retain its identity and remain relevant in a changing world, it should engage in advocacy to address structural and power issues. Social workers should engage in advocacy work targeting policy makers to promote appropriate policy action and the enactment of anti-discrimination laws and policies. There are several ways in which social workers can effectively advocate for the rights of older people and, in particular, eliminate the abuse of older people. Social workers should facilitate the formation of stronger older people’s associations and think tanks to provide platforms for advocacy and raise older people’s voices against abuse. Equally, social workers should work with existing older people’s organisations to improve their capacities to advocate for and demand observance of the human rights of their primary targets. Likewise, social workers should promote dialogue between government and older people to discuss human rights issues. Addressing abuse of older people requires a dialogical praxis approach as a stepping stone in promoting the rights of older people in developing countries. It will equally facilitate a process for policy makers to understand and appreciate the existence of abuse and make relevant policies and strategies to end this injustice. Social work can advocate for the enactment of laws and policies protecting and promoting older people’s rights. In most countries where the incidence of abuse of older people is high, there are no such older people- specific laws protecting and promoting the rights of older people (Aboderin & Hatendi, 2013). Social workers can address this lack by col- laborating with social workers in positions of authority and in parliament to promote the enactment of laws and policies to address the challenge of abuse of older people. However, social workers should not stop at advocating for these laws but also sensitise older people about them. In countries that have enacted such laws, social workers need to increase their efforts and advocate for the enforcement of such laws. Furthermore, social workers need to advocate for the integration of critical social values in all policies addressing older people. They need to stand up and demand policy reforms when policies address only the needs of older people. Social workers need to espouse values such as citizenship, respect for diversity and personhood in policy documents. The point often overlooked is that older people in developing countries constitute a smaller percentage of the national population than they do in developed countries. This implies that

FORNAME SURNAME Title of the thesis (or part of title) 11 Ageing in a changing society I 125 they are too small a group to constitute a vocal constituency. Therefore social workers should work with older people in advocating for inclusive policies. Social work practitioners ought to empower older people to raise their voices against abuse. Substantial research indicates that empowerment of older people enables them to challenge injustice and gain control of the affairs that concern them (Butler & Webster, 2004). Through empowerment, older people will gain power, articulate their rights and further speak out against macro-structural challenges such as corruption, poverty, poor service delivery and poor governance that exacerbate their abuse. Social work can achieve this through designing face-to-face community sensitisation programmes for older people, participating in radio programmes emphasising the rights of older people and their value in society and presenting advocacy drama in communities, conveying messages on the rights of older people.

12 FORNAME SURNAME Title of the thesis (or part of title) 126 I Ageing in a changing society all enterprising. It is based on such individualistic philosophies that concepts such as “successful ageing”, “active ageing” and “positive ageing” come to the fore. Moreover, in such a context, the market “ensures that everyone gets what they deserve” (Monbiot, 2016). Indeed, this disempowers, disadvantages and disenfranchises older people, which exacerbates ageism, leading to the abuse of older people. Capitalism has also had far-reaching effects on the social work profession. It has stripped the profession of its operating space though neoliberal and managerial policies and structures (Jones, 2014). For instance, neoliberal and managerial practices keep social work practitioners occupied with record keeping, assessments and monitoring for public services. Hence, social workers have less time for the relational and person-centred tasks needed to safeguard older people from abuse. Relatedly, such policies continue to restrict social workers to a controlling role, to maximize se profits, rather than being agents of social change. With the commodifica- tion of ageing services, social workers are constructing older people as consumers and responsible citizens. This not only disempowers older people but also challenges their citizenship. As Jones (2014) rightly puts it, due to the impact of capitalism, the social work profession has “lost its autonomy and ability to define itself” (p. 487). In its current practice, one wonders whose interests social work serves, those of the paymaster or the service user. Furthermore, capitalist practice undermines the principles of citizenship and personhood that define social work. Subsequently, this devalues older people and eventually society develops fewer qualms about disregarding older people’s rights, which exacerbates abuse. Moreover, the erosion of citizenship is increasing marginalisation and forcefully turning older people into passive objects of decisions made by others. From the African perspective, the abuse of older people is largely a product of the social impacts of globalisation and capitalism. For instance, capitalism embedded in individualism and competition has eroded the collectivist social values of mutual respect and togetherness that under- pinned the care for disadvantaged people (Rankopo & Osei-Hwedie, 2010). Indeed, Sevenhuijsen (1997) presents a succinct and convincing argument that capitalism vilifies dependence and regards interdependence as inimical to individual and societal growth. The invaluable principle of reciprocity through which older people were guaranteed oversight and care has been left behind in the past. Moreover, globalisation, which is acutely characterised by migration, has had perilous effects on the family system, leading to an epidemic of loneliness, resurgent old-age poverty and

FORNAME SURNAME Title of the thesis (or part of title) 13 Ageing in a changing society I 127 isolation, which are potential pathways for the abuse of older people. Based on the above context, I argue that social work advocacy is a more ostensibly committed approach to addressing abuse of older people in developing countries.

14 FORNAME SURNAME Title of the thesis (or part of title) 128 I Ageing in a changing society social workers are employed by non-governmental organisations, advocacy is also limited. This suggests that several reasons account for social work’s inability to engage in advocacy for older people. The fight against the abuse of older people is further bogged down by limited government action. Interventions addressing abuse of older people and other social problems in developing countries are mainly implemented by non-governmental organisations. Such interventions are limited in scope to address such a widespread problem of abuse. Relatedly, there is no political will to invest resources in programmes that aim to improve the welfare of older people due to the lack of “economic consideration and outright prejudice” from the policy makers (Wamara & Carvalho, 2019). In addition, older people are perceived as people with unmet needs rather than people with rights and values. This dents the positive image main- tained by other groups in society. Corruption remains one of the biggest challenges in the fight against the abuse of older people. This accounts for the increased land and property grabbing from older people who, by vir- tue of their marginalisation, cannot receive fair hearing in the courts of justice. Therefore, adopting an advocacy-based social work approach should be seen as a top priority if social work is to achieve better welfare outcomes for older people in developing countries. This is not solely because of the severity of abuse but also due to the structural changes, cultural shifts and constant change in a gradually globalising and technological world where family ties and other traditional care systems are progres- sively eroding.

FORNAME SURNAME Title of the thesis (or part of title) 15 Ageing in a changing society I 129 in parliament to influence the enactment of laws and policies, empower older people to speak for their rights, and advocate against structural challenges that exacerbate abuse.

16 FORNAME SURNAME Title of the thesis (or part of title) 130 I Ageing in a changing society References Aboderin, I. & Hatendi, N. (2013) Kenya. In: P. Amanda (eds.) Interna- tional perspectives on elder abuse. New York, USA: Routledge, 122 – 133. Anhlund, P., Andersson, T., Snellman, F., Sundström, M. & Heimer, G. (2017) Prevalence and correlates of sexual, physical, and psychological violence Against Women and Men of 60 to 74 years in Sweden. Jour- nal of Interpersonal violence, 1 – 23. Allan, J. (2009). Doing critical social work. In: J. Allan, L. Briskman and B. Pease (eds). Critical Social Work : Theories And Practices For A So- cially Just World. Crows Nest: Allen and Unwin. Arnold, E. N. (2014). Social Work Practices: Global Perspectives, Chal- lenges and Educational Implications (Social Issues, Justice and Status). Nova Science Publishers Inc; UK. Brown, M. E., Livermore, M. and Ball, A. (2015). Social Work Advocacy: Professional Self-Interest and Social Justice. Journal of Sociology and Social Welfare, XLII (3) 45 – 63. Butler, S. S. & Webster, N. M. (2004). Chapter 4: Advocacy Techniques with Older Adults in Rural Environments, Journal of Gerontological Social Work, 41:1-2, 59-74. Dong X. & Simon, M.A. (2013a) Elder abuse as a risk factor for hospital- ization in older persons. JAMA Intern Med; 173:911–7. HelpAge International (2014) Violence against older people is a global phenomenon. HelpAge International press release. Jones, R. (2014) ‘The best of times, the worst of times: Social work and its moment’, British Journal of Social Work, 44(3), 485–502. Legal and Human Rights Centre (2009) Tanzania Human Rights Report 2009: Incorporating Specific Part on Zanzibar. Mmatli, T. (2008). Political activism as a social work strategy in Africa. International Social Work, 51(3), 297–310.

FORNAME SURNAME Title of the thesis (or part of title) 17 Ageing in a changing society I 131 Monbiot, G. (2016, April). Neoliberalism – the ideology at the root of all our problems. The Guardian, 15 April. Retrieved from https://truthout.org/articles/neoliberalism-the-ideology-at-the-root-of- all-our-problems/ Richan, W. (1973). Dilemmas of the social work advocate. Child Welfare, 52(4), 220-226. Sevenhuijsen, S. (1997). Feminist ethics and public health care policies. In DiQuinzio, P. and Young, I. M. (eds), Feminist Ethics and Social Poli- cy. Bloomington: University of Indiana Press, 49-75. Sewpaul, V. (2016). Politics with soul: Social work and the legacy of Nel- son Mandela. International Social Work, 59(6), 697–708. UNDESA (2014) UN findings flag violence, abuse of older women accused of witchcraft. New York. Retrieved from http://almaty.sites.unicnetwork.org/2014/06/17/un-findings-flag- violence-abuse-of-older-women-accused-of-witchcraft/ Wamara, K. C. & Carvalho, M. I. (2019). Discrimination and injustices against older people in Uganda: Implications for social work practice. Journal of International Social Work, 1–13. Yon, Y., Mikton, C.R., Gassoumis, D. Z., & Wilber, K. H (2017) Elder abuse prevalence in community settings: A systematic review and meta- analysis. The Lancet Global Health, 5(2) 147 – 156.

18 FORNAME SURNAME Title of the thesis (or part of title) 132 I Ageing in a changing society Addressing diversity in later life Merve Tuncer

Ageing in a changing society I 133 research has been discussed widely. I am very well aware that adding ‘age’ as an additional social division will not make this research an intersectional one. However, age-specific experiences in everyday life is a rather under- researched topic. In order to be able to address the complex manifestations of social inequality, all social divisions must be considered in relation to each other. Because of this, I aim to explore these age-specific experiences in relation to other social divisions. In other words, I think the experiences of older migrant women in Sweden qualitatively differs from the experiences of older migrant men or older Swedish women. Therefore there is a need for more diversity in our gerontological imagination (Torres, 2015), in order to be able to address the challenges and opportunities that are experienced by such a heterogeneous group. If we look into the mainstream ageing models, we can see that they imagine a singular, homogenous form of sub- jectivity for old age which in reality represents a highly privileged one. This standardised approach to ageing is far from understanding the concrete status of older people and sustains the dysfunction of many structural issues that are affecting older populations.

10 FORNAME SURNAME Title of the thesis (or part of title) 134 I Ageing in a changing society abling some older people to keep their heads above water. For instance, I argue that migration is an important marker over the life course that is affecting how people age and how they choose to live. The experience of migration brings certain advantages and disadvantages in its baggage. In a similar vein, we can argue that precarious lives lead to precarious ageing. For this reason, I will try to address life course by looking at different social divisions and trying to understand how these divisions intersect. The issues related to ethnicity, gender, class and age are the determinants with regard to the accumulation of advantage and disadvantage (Dannefer, 2003) in my research’s context. Since I will incorporate this intersectional approach, these divisions are not going to be addressed as sub-categories but rather will be incorporated in relation to each other.

Ageing in a changing society I 135 health promotion seem to be based on the hope that problematic situations such as disease and poverty will not occur in later life. As she highlights, “where dependency begins, policy ends” (Timonen, 2016: 45). Therefore these handy solutions are formulated to benefit the ‘already healthy and wealthy’, rather than focusing on the underprivileged groups. For instance, they overlook the close correlation of socio-economic class and voluntary work. Voluntary work in later life requires good health and a steady income and/or high economic status. So being ‘socially productive’ is not something that can be prescribed to older people who are already struggling with poverty or poor health. Similarly, capitalising older people by promoting extended paid work overlooks the needs and demands for retirement while stigmatising those who retire ‘early’ and it carries the danger of forcing older people to work involuntarily. Lastly, model ageing frameworks are developed around a neoliberal model citizen. This model citizen is generally imagined as a retiree with a steady pension, in good health and with a family to support them. Also, they are imagined in a Western context with specific cultural undertones. For instance, the policies regarding old age care are developed around a Western ideal of later life. What is being understood as successful ageing or productive ageing can look quite different in different cultural contexts. The most important point here is to consider cultural diversity while avoiding stereotyping and essentialism.

12 FORNAME SURNAME Title of the thesis (or part of title) 136 I Ageing in a changing society the effects of accumulated inequality and the long term effects of being exposed to precarious conditions. Certain conditions such as malnutrition as a child, being exposed to environmental pollution, trauma and other damage-causing factors have an impact on the health condition in later life. The- ories such as cumulative advantage and disadvantage theory (CAD) and cumulative inequality theory (CI) suggest that individuals accumulate certain disadvantages and advantages over the life course depending on the opportunities and risks that they have been exposed to. Therefore the gap between individuals continues to widen during their lives. Migrant and refugee groups often face different kinds of discrimination and exclusion which is leading to social inequality in the broader picture. So taking these theories as a point of departure, we can argue that the structural aspects of inequality are benefiting the already privileged groups while keeping the underprivileged communities’ on the lower rungs of the ladder. This barrier to social mobility is especially visible in refugee communities. The structural system continues to generate inequality for the ones who are at the bottom of the social strata. The challenges they face put them in a vulnerable position in their everyday lives and this position affects their work and family relations. Moreover, it can be argued that the policies developed for underprivileged groups fail to address certain cultural differences. I am aware of the danger of using ‘cultural difference’ here, but this difference does not necessarily imply an essentialist point of view, but simply a diversified understanding of policy making. It is important to note that the translation of these cultural differences into policies does not necessarily mean identity-centred practices and implementations based on ethnicity. Instead, I argue that social services must be as diverse as possible so they are accessible for everyone.

Ageing in a changing society I 137 that relate old age with unproductivity. This emphasis on the older adults as an economically inactive population (i.e. the emphasis on old age dependency ratios and pension costs) deepens this issue and transforms into a type of scapegoating. Negative old age stereotypes assume that older workers are less creative, less cautious, less trainable and more resistant to change. While this ageist discourse ignores the contribution of older adults who are still in the workforce, it also devalues the un-paid and/or voluntary work that has been undertaken by older people. Being resilient to ageist stereotypes and practices is in close relation with the position of older adults in society since class, ethnicity and gender are determinant factors with regard to the potential of resistance and coping. For instance, the issue of care-giving becomes prominent when it comes to unpaid work in old age. There are many older adults who are caring for their spouses, children and grandchildren. Older women hold a specific position in care giving. Due to the gendered nature of care work, often older women are the ones who are providing care for people around them. A similar situation might also be said for the sandwich generation, who provide care for both older and younger generations. But in those cases too, women undertake the majority of familial care. This brings me to the second aspect of old age experiences: the experiences that are specific to older women.

14 FORNAME SURNAME Title of the thesis (or part of title) 138 I Ageing in a changing society and more exposed to risk over their life course. The intersection of many disadvantages eventually leads to precarious conditions in later life. For example, women face poverty in countries where women’s participation in the workforce is low and where the only eligible pension is occupational. To give another example, women generally live longer than men. This results in a significant number of women who are living alone and often living without enough support. The situation even worsens if the person has poor health and is unable to access proper treatment. There is also the issue of oppression and expectations based on traditional gender roles. Women are expected to give more care, take more re- sponsibilities in the household and engage in more un-paid invisible work. In some cases, they are discouraged or restrained from engaging in educational activities or certain types of jobs due to cultural or religious stigma. Nevertheless, these gendered practices should not be considered in isolation from other structural components. Most research on migrant women focuses on familial roles and care and therefore often fails to explore the diversified nature of their experiences. Women also develop coping strategies, resistance practices and different household allocation mechanisms to over- come these barriers and these are all part of the everyday experiences.

About the author: Merve Tuncer Merve Tuncer is a PhD in Sociology at Örebro University as part of the Newbreed Successful Ageing Doctoral Program and Work, Family and In- timate Relations (WFIR) Research Group. She completed her MA degree in Sociology at Istanbul Bilgi University with a dissertation on urban ageing and the right to the city. Her PhD project focuses on the experiences of migrant women who are ageing in Sweden. Her academic interests include social gerontology, gender, migration and urban studies.

Ageing in a changing society I 139 References Biggs, S. (2014). Precarious ageing versus the policy of indifference: international trends and the G20. Australasian journal on ageing, 33(4), 226. Butler, R. N. (1969). Age-ism: Another form of bigotry. The gerontologist, 9, 243-246. Dannefer, D. (2003). Cumulative advantage/disadvantage and the life course: Cross-fertilizing age and social science theory. The Journals of Gerontology Series B: Psychological Sciences and Social Sci- ences, 58(6), 327-337. Elder Jr, G. H. (1975). Age differentiation and the life course. Annual review of sociology, 1(1), 165-190. Estes, C. L. (1993). The aging enterprise revisited. The gerontologist, 33(3), 292-298. Ferraro, K. F., Shippee, T. P., & Schafer, M. H. (2009). Cumulative inequality theory for research on aging and the life course in V.L. Beng- ston, D. Gans, N.M. Putney, M. Silverstein (Eds.), Handbook of Theo- ries of Ageing (pp. 413-434) NY, USA: Springer Publishing Company Liversage, A. (2009). Life below a Language threshold’? Stories of Turkish marriage migrant women in Denmark. European Journal of Women’s Studies, 16(3), 229-247. OECD (2017). “Labour force participation rate, by sex and age group” in Employment (database). Data extracted on 22 Oct 2019 O’Rand, A. M. (1996). The precious and the precocious: Understanding cumulative disadvantage and cumulative advantage over the life course. The Gerontologist, 36(2), 230-238. Standing, G. (2011). Precariat: The New Dangerous Class. NY, USA: Bloomsbury Publishing Plc. Timonen, V. (2016). Beyond successful and active ageing: A theory of model ageing. Policy Press.

16 FORNAME SURNAME Title of the thesis (or part of title) 140 I Ageing in a changing society Torres, S. (2015). Expanding the gerontological imagination on ethnicity: conceptual and theoretical perspectives. Ageing & Society, 35(5), 935-960. Yuval-Davis. (2006). Intersectionality and Feminist Politics. European Journal of Women’s Studies, 13(3), 193-209.

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