Art & science | international health

Sharing skills in dementia care with staff overseas João Marçal-Grilo spent a year and a half on a volunteer work placement in Sri Lanka. Here he reflects on his experiences and how exchanging knowledge can benefit all parties Correspondence [email protected] João Marçal-Grilo is dementia specialist nurse, Red and Yellow Care, an independent healthcare company offering specialist dementia care, London Date of submission February 19 2014 Date of acceptance March 26 2014 Peer review This article has been subject to double-blind review and has been checked using antiplagiarism software Author guidelines nop.rcnpublishing.com

Abstract More than 35 million people worldwide are living with dementia. In some countries the existence of a health and social welfare state offers a level of support to those affected, but in many others resources are limited and inadequate, with responsibility for care lying primarily with relatives and friends. Significant efforts are being made by low and middle income nations to respond to the health needs of patients and carers, yet insufficient numbers of professionals and lack of specialist training opportunities are barriers that are difficult to overcome. Based on the author’s volunteering experience in Sri Lanka, this article explores the role of UK trained nurses in supporting the development of dementia care services in countries where resources are limited. It discusses the contribution that nurses can make to the creation of services and reflects on the benefits that such exchanges can have on nursing practice in the UK. Keywords Dementia, health care abroad, overseas work, sustainable development, volunteering THE WORLD population was 7.2 billion in 2013 (United Nations Population Fund (UNFPA) 2013a). This figure is expected to increase by one billion over the next 12 years and reach 9.6 billion by 2050. While fertility rates are predicted to remain relatively unaltered in Europe, North America and Oceania, growth will take place mainly in low income countries, with more than half in the African continent (UNFPA 2013b). Since the end of the second world war, progress in research and development and advances in

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medical care have fuelled significant improvements in global health status. However, a number of threats to human health remain. According to the World Health Organization (WHO), in 2010 there were 104 million underweight children worldwide, most of whom lived in the developing world. In contrast, 43 million children under the age of five were overweight and 2.6 million people died as a result of being overweight or obese, with most from high income countries. In 2012, an average of 1,300 children under the age of five died of malaria every 24 hours, and approximately 35 million people were living with human immunodeficiency virus (HIV), with one in every 20 adults in sub-Saharan Africa infected. As a non-communicable condition affecting increasing numbers of people worldwide, dementia has been classified as a global public health priority by WHO and Alzheimer’s Disease International (ADI) (2012). Most recent figures suggest that approximately 35 million people across the world live with dementia, a number expected to triple by the middle of the 21st century (ADI 2013). Like malaria or HIV, no cure has yet been found for this progressive degenerative condition. Treatments are increasingly available to those affected, yet the quality and coverage of care on offer vary considerably depending on where you live in the world and average disposable income. In most of the west the existence of a social welfare state and the availability of specialist care offer a level of support to those affected by dementia, which is unknown to much of the developing world. In countries such as the UK, more investment is needed in health and social care systems to enable those diagnosed with dementia May 2014 | Volume 26 | Number 4 35

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Art & science | international health to live well. There remains a great deal of work to be done on prevention, diagnosis and treatment, however the availability of resources and above all the knowledge gained from greater awareness throughout society enables us to provide more informed interventions than ever before. No country is exempt from having to deal with the social and human effects of dementia, yet inevitably for those where resources are limited this challenge assumes far greater proportions. The responsibility for developing health services able to meet the needs of an ageing population and those affected by dementia lies primarily with national governments and policymakers. While some countries wait for this to take place, UK trained healthcare staff could play a constructive role in this process by sharing dementia care skills and contributing to the delivery of sustainable services in the developing world. This may have benefits for individuals involved and the UK health system.

Changing population of Sri Lanka Years of ethnic conflict have left deep scars in large segments of society in Sri Lanka, yet this old, culturally vibrant country is now moving towards a brighter future. Paradoxically, it is also a young nation compared with other countries; children and young adults account for a large proportion of the population. This is, however, changing. At the turn of the century, Sri Lankans aged 60 years and above accounted for around 9% of the island’s inhabitants. This figure is predicted to increase to 18% by 2025, and to 28% by 2050, more than one quarter of the country’s human capital (Department of Census and Statistics – Sri Lanka 2001, Institute for Health Policy 2007). Such rapid changes in demographics are likely to generate epidemiological trends never witnessed before. In the next 20 years, South Asia is expected to experience a 107% rise in the number of cases of dementia, compared with a 40% increase in Europe (WHO/ADI 2012). Inevitably, Sri Lanka is likely to follow this trend. Even if the concept of dementia remains unfamiliar to Sri Lankan society as a whole, many are already familiar with the symptoms. Over the past two decades, those presenting with behavioural problems related to dementia and subsequently attending hospitals has steadily increased.

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A growing number of specialised and dedicated health professionals are demonstrating interest in this area of health care. Specialist dementia support is, however, limited and with the exception of the capital Colombo, is almost non-existent in most other regions of the island. If support is available, it is provided primarily in hospital settings rather than via community-based services.

Resources and education As a middle income country with only 4% of its gross domestic product (GDP) dedicated to health (De Silva et al 2013), Sri Lanka has a shortage of health professionals including nurses, occupational therapists (OTs), doctors and many other specialties. Free education in state schools and universities has been provided since 1945, and efforts have been made to reduce the migration of healthcare workers to other countries (De Silva et al 2013). Over the past two decades, Sri Lanka has consistently invested in the specialisation and knowledge of its medical workforce by increasing the intake of medical students, establishing new medical schools and stipulating a compulsory period of foreign training for those doctors wishing to qualify as specialists. Numbers, however, remain low. Equally, the same level of investment in training other professional groups such as nurses or OTs is yet to take place. According to the World Bank (2013), in 2010 Sri Lanka had 1.6 nurses and midwives per 1,000 inhabitants, almost double its giant neighbour India (1.0), yet considerably less than Australia (9.6), the UK (10.1) or Belgium (22.2). Nursing education is provided by the state and private organisations. There are about ten state-run nursing academies across the island, and six private schools located in and around Colombo and on the south coast. The nursing diploma takes three years to complete, focusing almost exclusively on general nursing. Anecdotally, I have heard that the number of students entering the profession is growing, yet most specialist experience is gained when they are employed; formal post-qualification training in old age care, mental health, learning disabilities or children’s nursing remains patchy and limited. The percentage of nursing staff working directly with those aged 65 years and above is unknown. Specialised care of older adults and in particular those living with dementia is therefore in the hands of a limited number of health professionals, often leaving families and friends with no professional assistance. In addition, in healthcare settings the nurse’s role is often compromised by the existence of fixed hierarchical structures that foster the NURSING OLDER PEOPLE

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prevalence of medical models above all other approaches to care, limiting the potential of nurses and others to be more actively involved in decisions about best dementia practice. An increasing number of older adults experiencing dementia in Sri Lanka, combined with a growing nursing workforce and the significance of informal care, does however leave room for new caring opportunities in and with local communities. Recognising the clinical knowledge and potential in this resilient workforce and encouraging nurses to take part in the development of community-based dementia care services is a challenge worth exploring.

Voluntary placement From late 2011 to spring of 2013, I volunteered in Sri Lanka via the UK-based non-governmental organisation Voluntary Service Overseas (VSO). Throughout the 18 months of my stay, I worked as a community dementia specialist nurse at the Lanka Alzheimer’s Foundation (LAF), a non-governmental organisation advocating for the needs of those affected by dementia, and Sri Lanka’s representative in ADI. The aim of the placement with LAF was to strengthen the skills and competencies of the local community in dementia care and to gain new expertise and transferable skills of benefit to nursing practice in the UK. LAF was founded in 2001, and despite challenges, it has become a first port of call for those seeking advice and support while dealing with the effects of dementia. The foundation focuses primarily on raising awareness among health professionals, policymakers and the general public of the needs of people living with dementia and their carers. The stigma around dementia remains the largest obstacle for those seeking help. LAF produces information in all of Sri Lanka’s three official languages – Sinhalese, Tamil and English – challenging some of the beliefs about dementia, offering confidential support to those ashamed of looking for support, and encouraging open dialogue about an issue that persists on being a taboo. LAF also offers practical support in the form of different cognitive-stimulating activities for people living with dementia, support groups for relatives and carers and periodic training on dementia caring skills. As a volunteer nurse, my role was primarily to assist LAF’s dedicated team of professionals and local volunteers to structure and implement some of these activities, evaluate results and reflect on ways to make good quality dementia care sustainable with limited financial and human resources. It was above all an opportunity to NURSING OLDER PEOPLE

explore how nurses and other professionals can contribute to the development and delivery of services, ensuring the full participation of local communities and of those seeking help. I was involved in training and educating health professionals on assessment, risk management and care planning skills, in the facilitation of therapeutic approaches to treatment and maintenance of good quality of life after diagnosis, and in securing links with other organisations operating in health and social care. In addition to working with trained staff, a significant part of my time was spent alongside committed volunteers and individuals holding important roles in their communities, from religious leaders to heads of informal social groups, who often replace health professionals where these are not available, and are paramount for the delivery of care and support to those most isolated and in need. Across the country, health professionals, community leaders and above all those directly affected by dementia face significant challenges while trying to improve standards of social and health care. Day-to-day life for many Sri Lankans experiencing ill health can be harsh and lonely. Memory and disorientation are often mistaken as part of the ageing process, and ignored until behavioural problems become unmanageable. Obtaining a diagnosis is difficult, as specialist health services are scattered or non-available. For those in a caring role, emotional and practical support is limited, and the shame affecting families is often a deterrent to accessing help. Husbands

The author João Marçal-Grilo during his time in Sri Lanka with Mary, a person living with dementia

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Art & science | international health and wives, sons and daughters, and grandchildren are forced to leave work to care for relatives. In a country where large numbers of people live on less than US$2 (£1.21) a day, disease often drags families into further social deprivation and poverty and contributes to deeper inequalities in society (United Nations Regional Information Centre for Western Europe 2013). The resilience of those involved is admirable. The ingenuity of people affected, families and friends, and those offering support, whether trained or unqualified, did not go unnoticed by outsiders.

Professional structure

A group of nursing students outside Sri Lanka’s largest mental health hospital, the National Institute of Mental Health

Working in a foreign environment threw me out of my professional comfort zone. By entering the world of dementia care in South Asia, even for a short time, I was able to experience the pleasures of working with an ethnically diverse community eager to learn and exchange ideas on best practice. I also shared the day-to-day frustrations familiar to so many Sri Lankans trying to work in a bureaucratic, hierarchical system dominated by power struggles and resistance to change. In such social and work contexts, information and knowledge are often perceived as resources to hold on to, rather than share; the health professional has a dominant, authoritative expert

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role over the patient; and a strict pecking order defines the structure on which health and social care systems stand, offering little room for multidisciplinary approaches to care. When working in such distinct health settings, being realistic about how much can be achieved in a limited time frame is crucial to avoid feelings of failure and disappointment. If one of the several objectives initially outlined is successfully met, and above all if those who the nurse works with experience the benefits of such interactions, then a positive and significant change has taken place, even if not always long lasting. Transformation in clinical practice occurs slowly, and is likely to be most successful if cultural and social nuances are taken into account when planning the provision of person-centred, inclusive dementia care. Ultimately, exchanging skills, encouraging reflection and favouring the use of local knowledge are likely to increase the chances of change being more sustainable. An approach that acknowledges the value of personal experiences and communal expertise will also encourage a sense of ownership among those embracing new ways of offering care, removing concerns about what could be perceived as neo-colonialist health and social care practices. Although the absence of healthcare strategies and guidelines may generate anxiety and apprehension when working in a foreign clinical environment, it can also offer a unique opportunity to be creative, original and innovative in how dementia care is approached. Risks can be taken and inspiration is drawn from those who have mastered the skill of working in restrictive and deprived environments. The complexity of some of the challenges posed by the exposure to contrasting social realities can instigate profound changes in how we operate in clinical environments and evaluate our own individual practice. In turn, such challenges are likely to enhance individual professional development and contribute to a more skilful, robust and creative national health workforce. The limitations in financial and human resources witnessed in overseas work can encourage greater resourcefulness and a capacity to respond quickly to unexpected and volatile circumstances. The tiered ranking system of certain societies throws practitioners into intricate networks of professional relationships that require patience, diplomacy and negotiation. The scarcity of trained staff with solid specialist skills highlights the privileges of having access to a far from flawless, yet diverse, educational system. NURSING OLDER PEOPLE

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It is also a reminder of the importance of sharing knowledge and of the responsibility that all nurses have in supporting others, colleagues and patients, to make informed choices about the care they wish to receive. Encouraging the participation of nurses in overseas development health programmes is bound to create a better informed and well-equipped NHS or private healthcare workforce, able to respond to the care needs of an increasingly diverse and multicultural ageing population in the UK.

Conclusion Perceptions of dementia, mental health and wellbeing are variable and in constant flux. As the number of those affected by cognitive impairment rises, countries across the globe are exploring new psychosocial approaches to treatment, some more appropriate and with greater success than others, yet in most cases absorbing the cultural wealth and social wisdom of each community. Nurses are adaptable, imaginative professionals who aspire to offer the best possible care to those in most need. Millions of people around the world are affected by ill health, and there is no

In a country where large numbers of people live on less than US$2 a day, disease often drags families into further social deprivation simple solution to some of the challenges faced by patients, families and healthcare communities, with dementia being one of them. And yet, despite the immensity of some of these problems, nurses could have a growing role in exchanging skills, sharing resources and reducing regional gaps in the quality of health and social care on offer to older adults and other age groups. How we use what we know, how open we are to learn from others and how much we can achieve is up to us. We may not change the world, but we can certainly make it a healthier, fairer place in which to live.

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Conflict of interest None declared

References Alzheimer’s Disease International (2013) World Alzheimer Report 2013: Journey of Caring: An Analysis of Long-term Care for Dementia. www.alz.co.uk/research/worldreport-2013 (Last accessed: March 26 2014.) De Silva A, Liyanage I, De Silva S et al (2013) Migration of Sri Lankan Medical Specialists. Human Resources for Health. 11, 21. www.human-resources-health.com/ content/11/1/21 (Last accessed: March 26 2014.)

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Department of Census and Statistics – Sri Lanka (2001) Population Characteristics. tinyurl.com/nc5pwwr (Last accessed: March 28 2014.)

United Nations Population Fund (2013a) Linking Population, Poverty and Development. www.unfpa.org/pds/trends.htm (Last accessed: March 26 2014.)

Institute for Health Policy (2007) Population Ageing and Health Expenditure: Sri Lanka 2001–2101. tinyurl.com/ndbfhwd (Last accessed: March 27 2014.)

United Nations Population Fund (2013b) State of World Population 2013, Motherhood in Childhood. tinyurl.com/l4876wm (Last accessed: March 27 2014.) United Nations Regional Information Centre for Western Europe (2013) Living on a Dollar a Day in a ‘Middle Income Nation’. tinyurl.com/ o4gbw4y (Last accessed|: April 10 2014.)

World Bank (2013) Nurses and Midwives (Per 1,000 People). tinyurl.com/onxn8ew (Last accessed: March 27 2014.) World Health Organization (2013) World Health Report 2013: Research for Universal Health Coverage. www.who.int/whr/en (Last accessed: March 26 2014.) World Health Organization, Alzheimer’s Disease International (2012) Dementia: a Public Health Priority. tinyurl.com/pe4aw52 (Last accessed: March 27 2014.)

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Sharing skills in dementia care with staff overseas.

More than 35 million people worldwide are living with dementia. In some countries the existence of a health and social welfare state offers a level of...
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