An unanticipated journey within the landscape of care

Ahead of her seminar on 18 November, Jo Alexjuk reflects on her own journey in undertaking research into anticipatory grief, loss and bereavement of carers of people with dementia:

It was a pleasure to be asked by colleagues within the School of Health in Social Science to present at the CRFR Emotions Seminar Series this semester. They were particularly interested in my doctoral research which relates to: The journey from dementia diagnosis to final bereavement: an exploration of anticipatory grief, loss and bereavement experienced by carers of people with dementia. I felt this topic was extremely pertinent to the content requirements of the series, however, their request made me stop and think about my own ‘journey’ in undertaking this research and reflect on aspects that, for me at least, were totally unanticipated.

Research undertaken within the field of social sciences often reports on the ‘facts and stats’, the emotional experiences of the study participants: particularly with regard to research undertaken within the field of dementia care. Yet, as researchers employing research methods - whether utilising quantitative, mixed methods or as in my case a qualitative hermeneutic phenomenological approach - are we in actual fact ‘method researchers’? By this I mean are we akin to method actors? Are we the Meryl Streep or Robert de Nero of the research world who, especially with regard to phenomenology, impartially bring and immerse ourselves into the life-world, the lived-experience of others? And once the research is completed, do we withdraw with the ‘results or findings’, without acquiring any emotional residue from that experience?

My research journey began in 2008 and although I was pragmatic in my view towards my research role, for example in choosing my topic, how long the process may take and what I may encounter, I was nonetheless full of optimism. However, seven years on having experienced six close family bereavements (three of which were dementia-related) and a serious road accident involving my mother, I felt that I have been repeatedly thrown into a dual ‘role’ of family-caregiver and family-caregiver researcher.

On reflection this duality of roles has not been problematic insofar as my experience has offered a ‘truer’, more empathic approach to my research, which I felt that I already possessed, but perhaps hadn’t always previously maintained. The elucidation of a deeper understanding of the ‘lived experience’, the perceived and understood reality of the experiential ‘journeys’ of caregivers has resonated with me deeply.

During the research process I was always cognisant in adhering to professional boundaries with regard to my research aims and methodological application, but equally mindful of carer-participants’ expressions that caregiving is about more than the cognitive losses experienced by the person with dementia. There are also the physical and emotional experiences acquired by caregivers during and beyond their caring role.

Looking back over my research journey I have not only acquired an in-depth experiential perspective of caregivers of people with dementia, but I have also attained a personal understanding of the landscape of dementia care. My unanticipated journey will end with the submission of my PhD dissertation in April 2016, although I do anticipate future research journeys within this landscape of care.


Jo Alexjuk is a Lecturer in Dementia and Programme Director of the MSc in Dementia: International Experience Policy and Practice within the School of Health in Social Science, University of Edinburgh, as well as a member of the Edinburgh - Centre for Research on the Experience of Dementia: E-CRED. She is particularly interested in grief, loss and end-of-life care experiences of people living with dementia, whether they are family carers or people with dementia themselves. For further information contact Jo at ealexjuk@ed.ac.uk.

Jo Alexjuk’s seminar An unanticipated journey within the landscape of care will be held at CRFR on 18th November (12-2pm). To book a place email crfr.events@ed.ac.uk or call 0131 651 1832

Improving care for older people - together

The recently published special issue of the Journal of Integrated Care features articles from practitioners involved in the collaborative PROP - Practitioner-research: Older people project. In this blog, Catherine-Rose Stocks-Rankin celebrates the aims and outcomes of practitioner-research.

We’re really pleased to be able to share our special issue of the Journal of Integrated Care. This collection of journal articles was very much a collective effort, produced in part over a shared writing retreat in October 2013.

When we set out to write these articles together, we had two primary aims:

• First and foremost we wanted to showcase, and champion, practitioner-led research. Practitioner voices are often absent from traditional academic publications, though it’s estimated that that there likely to be many more practitioners who are active in social work research than there are university-based researchers in the field (Lunt, Shaw and Mitchell 2008). We thought it would be valuable to broaden the conversation in academic journals by including the wisdom and expertise of practice.
• Second, we wanted to expand the conversation about the integration of the health and social care systems in Scotland. The Public Bodies (Joint Working) (Scotland) Scottish Bill (2013) was passed in January 2014, but local governments and health boards are still determining the realities of this system-wide change. In this special issue, we offer insights from the ‘coalface’ and share some lessons from practitioners involved in a wide-range of integrated practice. 

In talking about integration, the practitioners involved in this special issue take a wide view. We argue that integrating or involving people who use services in their planning and evaluation is one form of integration. Joint working between practitioners from statutory and the third sector is another - as is the integration of academic research and practice-wisdom. These definitions of integration echo the Scottish Government’s policy memorandum to the Bill, which states: “reform based on centrally-directed structural changes would be unlikely to deliver the shift in outcomes required” (2013: para 157).

We agree whole-heartedly. If integration is to work it needs to include the whole spectrum of people and practices involved in health and social care - practitioners, carers, people accessing these services, policy makers, academics and so on. This special issue is a reflection of integrated working as much as a set of robust insights into the workings of integration in everyday practice. As we discuss in the introductory article to this issue, we have walked the walk and have produced these articles in a cooperative way.

The articles in this special issue reflect individual research projects undertaken by practitioners in Scotland working to improve services for older people. We called this the PROP project, which stands for Practitioner-Research: Older People. As a collaboration between Alzheimer Scotland, CRFR, IRISS, Glasgow City Council, NHS Lothian, VOCAL, and West Lothian Council. Funded by the ESRC with support from the Scottish Government’s Joint Improvement Team, this project represents a model of joint working between practitioners of different disciplines and a bridge between academic research and practice wisdom.

This special issue is just one of the outputs produced as part of this project. Nine practitioners took part on the PROP project and each has a podcast and postcard about their research on our blog. You can also download the full research reports of the papers included in this special issue.

The second PROP project has recently started: Practitioner research: outcomes and partnership will run until December 2015. For more information contact Stuart Muirhead.

Quality of life and dementia

CRFR associate researcher, Jane Robertson, reflects on how research is helping to change ideas about quality of life for people with dementia

Quality-of-life and dementia. Are these mutually exclusive terms? Certainly, loss and dread are commonly associated with dementia if we rely purely on media images of the condition. Losing the person as they succumb to a debilitating and dreadful disease is a view frequently portrayed when dementia is represented in newspaper and television reports. Indeed, there is much that is frightening and distressing about dementia, particularly as the condition develops and a person becomes progressively disorientated and communication becomes increasingly challenging. 

However, a sustained emphasis on ‘losing the person’ to a disease that eats away at their personhood negates the potential for people with dementia to continue to enjoy life. Significantly, it also makes it harder for people with dementia to be valued by others as having a meaningful life, if that life is continually represented in a one-dimensional and negative manner.

In the academic world, quality-of-life for people with dementia has traditionally relied upon observation and asking other people about what the person is experiencing (proxy reporting). Frequently, this perspective confirms a fairly poor picture of life with dementia. 

On the other hand, when the person is asked directly about their life, which has been the case in more recent research, more positive interpretations can be found. Their quality-of-life is not all bad. Like most people, it has its good and its bad aspects. This different perspective is often countered with the assumption that, if a person with dementia reports their quality-of-life in positive terms, this is due to a lack of awareness as a result of their condition. This stance therefore undermines the capacity, firstly, for people with dementia to reflect accurately upon their lives and, secondly, for people with dementia to be able to enjoy aspects of their life like anyone else.

Significantly, in-depth qualitative studies have demonstrated that people with dementia can reflect meaningfully on their lives even when they have significant cognitive impairment. Research has reported the potential for quality-of-life to be good if a person is valued by other people and if they are supported to continue to make a meaningful contribution in family and community life. 

Conversely, quality-of-life is often reported to be poor when the person believes they no longer have any social standing, particularly if they believe that others view them as being diminished in relation to their self and social identity. The importance, therefore, of presenting a more balanced perspective on life with dementia cannot be understated: if quality-of-life is closely associated with how others perceive and respond to a person, then understanding the positive aspects of life with dementia, as well as the challenges, is vital to ensure a society that treats people with dementia as having worth and value. Being able to find meaning within and from life are inseparable.

Dr Jane Robertson is a researcher at the University of Stirling with an interest in ageing, dementia and quality-of-life. She is an associate researcher with  the Centre for Research on Families and Relationships. Read more about her research examining narrative perspectives on quality-of-life among people with dementia here:  http://dem.sagepub.com/content/early/2013/03/15/1471301213479357

Challenge on Dementia

Co-Director, Heather Wilkinson, has had her collaborative research project, Healthbridge, included as a case study in the Prime Minister's Challenge on Dementia.

According to a recent Alzheimer’s Society’s report, three-quarters of people in the UK feel that society is not geared up to deal with dementia. It also found that three in five (61 per cent) people diagnosed with dementia are left feeling lonely, four in five (77 per cent) feel anxious or depressed and nearly half (44 per cent) have lost friends.

The PM has announced his commitment to make the UK a world-leader in dementia research and care, saying that not enough is known about the disease and has set out how the UK Government will lead on research in this area.

Healthbridge is an evaluation of the English Dementia Strategy. The strategy stresses the importance of promoting the quality of life and well-being of those living with dementia and their carers. As part of the implementation of the Strategy, dementia advisers and peer support networks were established in 40 demonstrator sites across England. These have developed a range of different methods and approaches for enhancing the well-being and increasing the resilience of those living with the disease. The Healthbridge evaluation aims to:

• describe the range of dementia adviser and peer support organisational models developed; and their evolution, management and governance.
• evaluate the impact of the new service models in terms of:
• the well-being of patients and carers
• their contribution to the objective of the Strategy
• the integration, sustainability and transferability of the organisational models involved
• examine in depth the patient/carer experience of the new service models, in respect of increasing accessibility, improving involvement and information, enhancing support for making choices, and increasing independence.

The study began on 1 April 2010 and is due to complete in September 2012. Interim findings indicate:

• strengthened partnership working;
• increased awareness of dementia on the part of providers;
• support provided being seen to fill a 'gap' in existing provision;
• a perceived reduction in carer stress;
• appreciation from other providers of the value of the new services;
• a reduction in demand for statutory services; and
• a network built on commonality of experience.

Led by University of Edinburgh the Healthbridge team have been brought together from Edinburgh University and Glamorgan University. 

Health Secretary Andrew Lansley said:

“Dementia is one of the biggest challenges we face as a society and we are determined to transform the quality of dementia care for patients and their families. In England today there are an estimated 670,000 people living with dementia, a number that is increasing with one in three people set to develop dementia in the future.

“That is why the Challenge sets out the Government’s ambition to increase diagnosis rates, to raise awareness and understanding and to strengthen substantially our research efforts so we can help those living with dementia have a better quality of life.”

New Publication: Providing Good Care at Night for Older People

Providing Good Care at Night for Older People
Practical Approaches for Use in Nursing and Care Homes
Diana Kerr and Heather Wilkinson

The experiences and needs of residents and patients in nursing and care homes are very different at night, and this is particularly true for those with dementia. Yet nursing and care homes are not always inspected with the same rigour at night as they are during the day, and night staff do not always receive the same levels of training, resources and supervision as day staff.
This book provides night staff, their managers and anyone else with an interest in care homes during the night with the information, knowledge and practical skills they need to deliver positive and appropriate care at night. The authors look at all of the issues that are particularly pertinent in caring for older people at night, including nutrition and hydration, continence, challenging behaviour, medication, night time checking, pain management and end of life care. They also look at the impact that working at night has on care staff, and offer practical suggestions to help them to safeguard their own health. The final chapter provides a set of night time care guidelines for inspectors that can also be used by managers to evaluate night time practices in their homes.
This book is essential reading for night staff and their managers and employers, as well as inspectors of services, policy makers, and anyone else with an interest in the provision of care for older people.
To order go to http://www.jkp.com/catalogue/book/9781849050647