Anthea Innes, PhD is Professor of Health and Social Care Research at Bournemouth University, UK, and Fiona Kelly, PhD and Louise McCabe, PhD are lecturers in Dementia Studies at the University of Stirling, UK.
In this interview they discuss their new book, Key Issues in Evolving Dementia Care, which looks at the very latest developments in the policy and practice of dementia care across the globe.
Can you tell is a bit about your work and what sparked your interest in dementia care research?
AI: To help finance myself during my Master’s degree studies, I worked part-time as an activities co-ordinator. I was struck that the ‘difficult’ residents were those who had the label dementia. However these were the same people I was drawn towards and really enjoyed working with; the challenge of communicating and finding creative ways to engage with people, of finding meaningful activities for individuals and small groups, was something I really enjoyed. My Master’s dissertation ended up being about care workers’ perceptions of difficult residents as a result. I was then lucky enough to get a post with Bradford Dementia Group, and was also able to register for PhD studies at the same time which looked at changing the culture of care in nursing/EMI and residential care settings. These early experiences have influenced my work. For example, all my research has a user view focus, whether it is trying to find out what staff think, what people with dementia’s views are on aspects of living with dementia or their care, and carers’ experiences. My particular areas of interests within social dementia research are rural service provision, use of technology to promote independent living and the care environment.
LM: Similar to Anthea, during the time I was studying for a Master’s degree I worked as a social care worker in a care home for older people. This work continued long after my degree was finished and led to a period of voluntary work with an organisation in India: the Alzheimer’s and Related Disorders Society of India. This work opened my eyes to the different understandings of dementia and the role of culture in how care and support are provided for people with dementia. This experience helped shape my PhD topic and led to my current academic career. My current work is split between teaching and research. The students we teach are all established practitioners and professionals in dementia care, and their input and interaction in the learning process helps keep us linked-in and up-to-date with practice in nursing, social work and other relevant fields. My research interests focus on culture and lifestyle; exploring how different factors influence development and experiences of dementia.
FK: I had a slightly different journey into the dementia field. I worked as a nurse in Ireland and then as a midwife in Scotland and worked part-time in the neonatal unit of a large maternity hospital. At that time midwives had to work a certain amount of hours in order to remain registered, and I had increasing difficulty maintaining my hours as the unit slowly replaced midwives with newly qualified nurses. Unable to find enough work to maintain my registration, I decided to find work closer to home and phoned up a local care home asking if they needed a nurse. Twenty years later, I still work there one night shift a month and I absolutely love it. While working in the care home I started a degree in social psychology and became fascinated by group processes, identity, ethics, group conflict and behaviour, and started to see links between what I was learning and what I was experiencing and seeing at work. The main goal with my further studies (MSc and PhD) was to integrate my practice experience as a nurse caring for people with dementia with my learning to date and research interests, which centred on creativity, communication and expression of selfhood in people with dementia. This goal has continued and extended throughout my academic career and I use my practice experience to inform my research and teaching and use learning from research and teaching to inform my practice.
How did the book come about? Can you explain what makes the book particularly timely?
AI: The idea for the book came from an international conference hosted by the Dementia Services Development Centre in 2010. Some of the book chapters are a development of oral presentations given at the conference. Other chapters are contributions from our international colleagues who did not attend the conference but whose work was a really good fit with the messages we wanted to include in this edited collection. For example, we wanted to ensure that we included chapters that discussed theoretical approaches to understanding dementia that shape and inform both policy and practice across the world.
LM: Since I first started doing dementia research there has been an explosion of literature, and dementia is now a health policy priority in the UK and several other countries. This is the first time that dementia is a political priority, creating drivers for focusing on all aspects of dementia, from anti-dementia drugs, to an increased knowledge about potential risk factors and preventions strategies, as well as innovative ways to provide high-quality support and care. Interest in dementia is therefore at an all time high and this book makes a contribution to theory, policy and practice issues and how these interlink and influence one another.
Did you notice any surprising differences, or similarities, between the approaches the different countries discussed in the book are taking?
AI: Bio-psycho-social approaches are now common place, with different disciplines acknowledging the strengths of different perspectives. A similarity is that a holistic approach to understanding dementia is now being advocated and applied to policy and practice.
LM: I think the striking thing about the policy section is how similar the issues are that are raised in the different countries. While each country has to work within its own social, cultural, economic and political frameworks (and these dictate how changes can be made), there are noticeable similarities in the focus on early diagnosis, hospital care, and including people with dementia in policy development across the different countries.
FK: I was struck, in the chapters of the practice section, by the level of commitment to make things better for people with dementia and those who care for and support them. The innovative approaches discussed share a similar concern to make things better at a local level, while also negotiating the difficulties encountered as a result of insufficient or declining resources.
What are the main challenges to developing theory-based policy and practice, and how will this book help to overcome them?
LM: I think a key challenge is that for many countries we are working within complex, confusing health and social care systems that have been built over time and in response to changing priorities – we cannot start from scratch and design a purpose-built system to provide dementia care. Also, the culture in different countries influences how families and individuals interact with the health and social care systems. The international perspective taken in this book allows and encourages people to look out from their own local and national processes and think about how things are done elsewhere. This broad perspective may help people to think about new ways of doing things. It is always interesting to read about places where change has taken place and where dementia services have developed in a positive way and to learn from these stories.
FK: For me, one of the main challenges is implementing policy in a climate of declining resources in dementia care. By resources, I mean financial input into ensuring that the design of care homes and hospitals is dementia-friendly and ensuring staff who support and care for people with dementia and their families are well trained and knowledgeable and also well remunerated. I also mean a declining workforce of people willing, suitable and available to care for people with dementia. Some of the examples in this book illustrate alternative ways of providing care, for example by using local people to care for people in their own homes, or by trying out small-scale changes in the design of a setting or by encouraging local networks of support. I hope people will be inspired to try out some of the innovative approaches discussed in this book and that, with collective effort, we will make a difference.
Copyright © Jessica Kingsley Publishers 2012.