Drawing across the material in this book, in this chapter we raise and discuss the emergent themes as highlighted by the contributions of leading experts and commentators from around the world. In terms of policy we consider systems issues and between-countries similarities and differences; for practice, we examine the relevance of culture and the importance of heeding the central human experience of dementia within the current healthcare system; and in respect of key emergent research topics, we feature the relevance of place-based planning and the role of technology. We end with a collated research agenda, drawing from topics suggested by authors across the chapters.

Policy and systems

Dementia is a costly issue for governments as people with dementia can live for a long time following their diagnosis, variably requiring different health and social care inputs (Prince et al, 2015). The World Health Organization (WHO) has taken a lead in establishing the need for coordinated national policy and planning approaches (2018), and has provided a toolkit for planning, education and community engagement (WHO, 2017), an online training programme for dementia carers (iSupport for Dementia) (WHO, 2020), and a knowledge exchange platform with access to key dementia data and indicators so that progress in meeting global dementia targets can be evaluated (Global Dementia Observatory) (WHO, 2019). The mhGAP toolkit can be adopted by individual countries and adapted to local systems and contexts.

The chapters in this book highlight the relevance of countries’ health systems and the contexts in which services are provided, as well as the characteristics of such services. By one interpretation, chapters depict health systems with features across a wide spectrum, from those with atomised services provided by a mixture of public, private and nongovernmental organisations (in Australia), through those that have become depleted (in Ireland), to apparently more coordinated and adaptive social welfarist models (such as those in Austria and Norway).

This book is the first edited collection to focus on dementia in remote and rural areas. Drawing on examples of research studies and innovative practice from remote and rural locations globally, it highlights the implications of living with dementia in remote and rural areas for dementia policy, practice and future research. The chapters represent countries with considerable experience and expertise in developing support and services for their rural and remote populations, such as Canada, Australia, the UK, Ireland and Austria. However, many other countries have rural geographies and ageing populations, and are likely to face similar challenges of meeting the needs of people living with dementia in remote and rural areas. To promote knowledge translation, the book's contributors share ideas from their countries to help practitioners working in challenging geographical landscapes anywhere as they strive to provide the highest standards of support for those living with dementia. The book draws on research conducted in different countries with longstanding histories of conducting remote and rural dementia research, and as such it is a resource for academics who teach or research rurality and dementia. The edited structure allows international examples of innovative research/practice in the remote and rural dementia field to be showcased with the implications of such national examples to be considered in relation to research, policy and practice globally. In this way, we hope that you, the reader, will find this edited collection to be a resource, whether you are a student, practitioner, policy influencer or academic, to assist you in enhancing the experience of living with dementia in remote and rural areas in the future.

Dementia has been defined by the World Health Organization as:

Although the symptoms of dementia may be similar, how these are experienced and the impact on individuals’ lives can vary significantly. The experience of dementia is one that is fraught with challenges for the person diagnosed with dementia, and for families, friends and communities. It may require coming to terms with new identity and functionality and may require significant adaptation and resilience at individual, family and community levels (Innes et al, 2011).

Introduction

This chapter discusses the process of developing collaborative working relationships with rural- dwelling older men with dementia in the UK. This population warrants further exploration in its own right, as often facilitators do not acknowledge and address the issues that can be specific to it, resulting in increased risks of social isolation and poorer health outcomes. The chapter outlines the potential challenges that can be encountered when seeking to engage this hard- to- reach group as well as solutions to address them. The lessons considered throughout the chapter are underpinned by theoretical knowledge and have been informed by reflexive practice through research that has sought to enhance social inclusion in rural- dwelling older men with dementia using a technological initiative. This will be discussed in more detail later in the chapter. While there were many challenges throughout this applied research, some of which will be examined later, the initiatives were warmly received by the men and successfully adopted within all three rural communities. They continue to this day, four years after the completion of the study, with funding obtained from local organisations, thereby highlighting their success.

Prior to discussing the lessons learned for successful collaboration with rural- dwelling older men with dementia, it is necessary to situate them within the wider context of the dementia- care field as well as provide an overview of the technological initiative that helped to inform them.

Context: why is there a need to better understand how to support community- dwelling older men with dementia?

Some current political and academic discourses highlight the importance of community initiatives for ensuring a cost- effective means to support the wellbeing (Kenigsberg et al, 2016; ADI, 2017, 2018) and psychological needs (Nyman and Szymczynska, 2016) of people living with dementia. For these initiatives to be successful, it is important that people with dementia are engaged as collaborators throughout their design, implementation and delivery, thereby ensuring that the outcomes are meaningful to them (Øksnebjerg et al, 2018). Despite this, research has consistently demonstrated the reluctance of older men (65 years and over) more generally, as well as those with dementia, to engage with traditional health and social care initiatives, thereby increasing their risk of isolation, social exclusion and poorer health outcomes (White, 2011; White et al, 2011; Milligan et al, 2015).

This section of the book focuses on research evidence from Canada, Austria and Ireland. However, the chapters in section 3 of this book are also informed by research evidence in relation to practice innovations. Research can throw light on areas that require policy support and practice developments to improve the lives of those with dementia. Research also often focuses on neglected areas of policy and practice concern, and rural dementia care has characteristically been a relatively neglected area for both rurality researchers and dementia researchers. As such this section provides a showcase for the models of care that have been developed in one area of Canada and one area of Austria that provide an evidence base to shape and inform practice developments and also to influence policy. The contribution from our Irish authors in this section demonstrates the need to collate evidence that illuminates policy and practice differences within a country and how this may lead to social exclusion and as such impacts on the lived experience of dementia. Research is a vital component of a change agenda, and the chapters in this section clearly demonstrate this.