Caring for People with Dementia: A Shared Approach


Christine Brown Wilson

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    About the Author

    Christine is an Associate Professor at the University of Queensland, Australia currently holding the position of Director of Teaching and Learning in the School of Nursing, Midwifery and Social Work. Prior to this Christine was a Senior Lecturer at the University of Manchester in the UK, where she worked with a number of organisations interested in improving dementia care. Christine’s research is interdisciplinary as she works with social workers, psychologists and engineers to consider novel solutions to real world practice problems. Christine adopts a partnership model of research involving people with dementia, family caregivers and staff. Whilst in Manchester, Christine led a Care Homes Research Interest Group that brought together academics, care organisations, healthcare staff, people with dementia, family caregivers and direct care staff to determine the questions that needed to be asked in research proposals. Christine’s research focuses on relationship-based approaches to care and how to improve the experience of people with dementia, their families and staff. Since returning to Australia, Christine has been working with indigenous organisations to explore the cultural transferability of relationship-based approaches to care. Christine is also working with family caregivers and people living with dementia in the community to consider how families and communities may provide support and further resources in living well with dementia. Christine has published widely in academic journals and her first book, Caring for Older People: A Shared Approach, was published by Sage in 2013 with positive reviews. Caring for Older People: A Shared Approach explains in depth how to apply relationship-based approaches to care in a range of settings drawing on the perspective of older people, families, staff and students. This book: Caring For People With Dementia: A Shared Approach, applies the same principles within the context of organisations, demonstrating how we can all make a difference when caring for people with dementia by working together at every level of the organisation.


    This book is about enabling person-centred and relationship-centred care in practice and highlights the importance of culture in advancing this perspective. Dr Brown Wilson calls this perspective relationship-based approaches to care. An important message she shares in the introduction of the text is: ‘To achieve the best care possible, we need to prepare nurses and other health care practitioners with the skills and attitudes to provide effective culturally responsive care’. As a dementia researcher and health professional I am very supportive of this statement and I would like to promote this book as one way to help readers and students to prepare for the practice of evidence-based care of people with dementia. Dr Brown Wilson’s message encouraged me to reflect on several situations in my teaching, research and family where relationship-based approaches to care were espoused but often not connected within practice. I share some of these reflections below in the hope that they demonstrate the importance of culture and relationship-based approaches to care.

    Some years ago when I was teaching a postgraduate class about dementia I was confronted half way through the semester by a small group of students from a culture outside of Australia. These students argued with me that they didn’t know why I was teaching subjects such as person-centred care, relationship-centred care and non-pharmacological approaches to care as these practices went against what was accepted and current practice in their country. For example, in their culture if a person with dementia was agitated or aggressive the family or health professional would manage the person and situation by giving them psychotropic medication and tying the person to a chair or locking them in a room. They argued that this resulted in the problem being contained: there was no longer a problem for staff or family of an agitated or aggressive person, and this was acceptable in their practice. I felt the floor opening up to me as I realised my teaching was representing an Australian culture of care and I had neglected to allow students the opportunity to examine their beliefs and practices in relation to evidence-based relationship approaches to care. This was a perfect opportunity for me to reflect on my teaching practice and to consider alternative ways to assist students from any culture to discuss and to understand why some practices even though they are common are not best for the individual. I hope readers of this text will also be open to practices that may be new to them and to take note of the approaches outlined by Dr Brown Wilson in this text.

    A few years ago when asking staff from a residential aged care facility to tell me about their philosophy of care they all quickly expressed that the philosophy of care in their organisation was person-centred care (PCC). However, not one of these staff could tell me what they did in their practice to advance PCC. They knew the words but they didn’t know how to play out such a philosophy within the care situation, as PCC was not incorporated or truly embraced within their organisation. Unfortunately even today I continue to see similar examples where PCC sits in broad statements within an organisational mission statement but is not truly practised. This text will help readers to understand the importance of culture and the impact of culture on care provision.

    Furthermore, we know that health and care staff are told not to get too close to patients/residents, as this will implicate their care. Therefore everything must be conducted at an arms distance so that staff don’t get involved with the individual as this can also emotionally implicate their situation. As a result we find communication is more likely to take place between staff to staff and limited communication takes place between staff and an older person with dementia. It is very challenging to provide a relationship-based approach to care if we do not ‘know’ the person and yet so often the culture and policies within an organisation can prevent this happening.

    Finally, I would like to reflect on a positive care approach that was presented to one of my family members. The staff in this situation understood PCC and the importance of relationship-based approaches. Unfortunately like many readers of this book, my family too has been touched by dementia with two grandfathers, a father, and sister-in-law all receiving a diagnosis of dementia. My grandfathers both died while being given little respect or dignity in the care they received. The care was far from a relationship-based approach to care. The approach was one that ignored the person while concentrating on the tasks at hand. In recent years I found my father’s situation was quite the opposite of what I had witnessed previously. My father ignored his dementia diagnosis and continued to teach in his swimming school a squad of young people who were in my father’s eyes future champions. They accepted his memory problems and his sometimes erratic behaviour as they trusted and admired his strengths. He had formed a strong bond and closeness to the students over the many years he had taught them. Several months before the passing of my father he spent a horrible two months in an acute care hospital for a comorbid condition. He became angry and aggressive toward staff and his condition deteriorated significantly to the point where he was no longer able to return home. He was very agitated on admission to a nursing home and we talked at length about his impression of the facility and staff. He didn’t want to be there and as the facility was not secure he talked of walking out of the door to go home. Staff were given an extensive personal history and his prominence in the community meant that several staff had crossed paths with my father as a result of his long running business. Unbeknown to me staff told a ‘white lie’ – by informing him that the facility once a week took the residents to the local physiotherapy pool (true for a small group) and they would like to offer him the role of volunteer swimming coach for the residents. They brought a white board into his room and my father used the board to write training programmes for the residents. He was at last focused on something he knew and had spent his life developing. I smiled as he confessed to me that he was working hard on the training programmes, however he was concerned that some of the residents were old and he didn’t know if they would be up to his rigorous schedules. He was heartened that others saw his potential. This activity gave him back his dignity, staff and residents enjoyed talking with him about the training programmes and in his eyes he was once again an important member of society. I hope that readers can also see this as a fine example of staff being truly involved in patient care and with a focus on the person’s strengths.

    Furthermore, this book aims to help readers (students) to lead and manage change through the organisation as a Complex Adaptive System and relationship approaches to care. I am in awe of Dr Brown Wilson for this aim as too many authors focus only on PCC and ignore the important perspective of relationships, culture and partnerships in care. I trust that readers of this book will move into practice with a focus on the integration of relationship approaches in the care they provide. I also hope that they will be better equipped to navigate the challenges of the complexities of organisations that care for older people. It is imperative that an ageing population has advocates that can make positive changes to practice. Importantly I hope readers and teachers will benefit from the numerous activities offered in each chapter of this text and the opportunity to reflect on their reading.

    Professor Wendy MoyleMenzies Health Institute Queensland and School of Nursing and Midwifery, Griffith University, Brisbane, Australia


    This book would not be possible without the people who live daily with dementia, their family caregivers and the organisations that support them who have given generously of their time to speak with me over the past ten years. I am indebted for the many stories shared with me that have been instrumental in demonstrating how multiple and shared perspectives underlie relationship-based approaches to care.

    I have been privileged to work with and alongside a number of people living well with dementia dealing with the everyday challenges the condition brings. In particular I would like to thank Peter Ashley for his expertise with the SensorMat project and Dr Ann Johnson for her support with research and teaching at the University of Manchester. I have also had the privilege of speaking alongside Christine Bryden in Australia. Thank you all very much for your time and energies and the inspiration provided by your life experience.

    It has also been my privilege to work with organisations that truly make a difference in the lives of people with dementia. Working with Community Integrated Care (C-I-C) in their development of the Each Step Dementia model demonstrated how an organisation could integrate relationship-based approaches to care at each level of the organisation. This experience forms the foundation of this book and I would like to thank Michelle Phillips, Manager of Each Step and the Executive Team for their support during my consultancy with C-I-C.

    There have also been colleagues upon whose experience I have drawn heavily, in particular, Professor Ruth Anderson and Associate Professor Kirsten Corrazini in their work on Complex Adaptive Systems in the USA and also Professor Marilyn Rantz and her team at Tiger Place in Missouri who are developing innovative technologies. In Australia, I would like to thank Professors Wendy Moyle, Nancy Pachana and Elizabeth Beattie for both their welcome and invaluable support as I returned back to Australia.

    This book would not have been possible without the support of the publishing team at Sage: Becky Taylor, Emma Milman, Charlène Burin and Katie Forsythe. Thank you for your patient support as you saw the many deadlines come and go. I also need to thank my great friends Jane and Rob for their very generous hospitality at their Blue Mountain retreat, without which, this book may never have been started. Although last, never least, are thanks to the tireless support of my husband Terry and daughter, Amee and son, Leigh as I juggle and chase the many deadlines that seem to define academic life. Terry as always has spent many hours proofreading these chapters and Amee has used her graphic design skills in producing the figures to near impossible timeframes. Thank you all for your patience and your love.

    Publisher’s Acknowledgements

    The publishers would like to thank the following individuals for their invaluable feedback on the proposal and chapters of the book:

    • Donna Doherty, Staffordshire University, UK
    • Angela Kydd, University of the West of Scotland, UK
    • Fiona Lundie, University of the West of Scotland, UK
    • Dr Sarah J. Rhynas, University of Edinburgh, UK
    • Genevieve Thompson, University of Manitoba, Canada
    • Sally Underwood, The University of Sheffield, UK

    The author and publishers are also grateful to the following for their kind permission to reproduce material:

    • Figure 1.1: Adapted and reproduced with kind permission from ‘World Alzheimer Report 2011: The benefits of early diagnosis and intervention’ Alzheimer’s Disease International
    • Table 6.2 : Alzheimer’s Society (2013). Building dementia-friendly communities: A priority for everyone. London: Alzheimer’s Society.
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