Person-centred cultures in dementia care – learning to communicate ‘Beyond Words’

 
Dr Julie Watson is a registered nurse and a Research Fellow in the University of Edinburgh’s School of Health in Social Sciences. Her research focusses on relating to people with dementia until the end of life in care homes. She is the author of CRFR Research Briefing 86 Face-to-Face: Relating to people with dementia until the end of life in care homes.

Person-centred care is widely advocated within health and social care policy in the UK (Department of Health 2010, Scottish Government 2017). In practice, however, person-centred care is often reduced to person-centred ‘moments’ (McCormack and McCance 2017). The challenge is to create person-centred cultures within our health and social care settings, such as care homes, which move beyond those extraordinary person-centred moments that can happen during certain activities, such as a birthday party, to permeating the ordinary and everyday, including being helped to have a shower or a meal.

There is an extra layer of complexity when considering person-centred cultures within dementia care. In our hypercognitive culture, which places a high value on cognitive ability (Post 2000), the cognitive impairment brought on by a condition such as dementia can have serious consequences; when a person with dementia loses the ability to have a conversation or remember another person’s name, it can lead to them being seen as less of a person than they once were. They can experience the loss of relationships and social isolation, which ultimately leads to suffering if their needs are overlooked when they are unable to express them verbally. This prompts the philosophical, but inherently practical question, ‘what is a person?’

Moving beyond a purely cognitive view of personhood and recognising that human beings are more than a mind, but are also a spirit and a body, expands opportunities to hold people with dementia in relationship until the end of life - and find ways of alleviating their suffering. How we view people with dementia, whether we recognise their enduring personhood despite the effects of advancing dementia, will determine how we behave towards them. This short animation - Beyond Words (see link) - summarises some of the ways people with dementia continue to communicate and connect with others beyond words. It is based on research findings from a PhD study which aimed to appreciate the ways that people with dementia and care staff in a care home relate to each other (Watson 2015). Recognising the enduring personhood of people with dementia and learning to connect ‘beyond words’, is a fundamental prerequisite to creating cultures in dementia care which enable the person-centredness aspired to within policy and practice – a first step in making the ordinary extraordinary.

View 'Beyond Words' on the University of Edinburgh's Media Hopper site:
https://media.ed.ac.uk/media/Beyond+Words/1_3xuqvt2z/40609491

The animation ‘Beyond Words’ and other work by the staff and students of Edinburgh Centre for Research on the Experience of Dementia will be on show at the Explorathon at Leith Labs on 29th September 2017.

References

Department of Health (2010) Personalisation through Person-Centred Planning http://webarchive.nationalarchives.gov.uk/20130123201648/http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_115175

Scottish Government (2017) Scotland’s National Dementia Strategy 2017-2020 http://www.gov.scot/Resource/0052/00521773.pdf

McCormack and McCance (2017) Person-centred Practice in Nursing and Health Care: Theory and Practice Wiley Blackwell: Oxford. Post, S.G. (2000) The Moral Challenge of Alzheimer Disease: Ethical issues from diagnosis to dying John Hopkins University Press: Baltimore and London

Watson (2015) Caring with Integrity: Developing the conceptual underpinning of relationship-centred palliative dementia care in care homes https://www.era.lib.ed.ac.uk/handle/1842/20458

Dr Julie Watson is the author of CRFR research briefing 86 Face-to-Face: Relating to people with dementia until the end of life in care homes.

Living in the shadows of dementia care

Dr Julie Watson is the author of our latest research briefing Face-to-Face: Relating to people with dementia until the end of life in care homes. Julie, a registered nurse, is a Research Fellow in the University of Edinburgh’s School of Health in Social Sciences. Next week some of her work features in the exhibition Living with Dementia: Fostering Hope, Challenging Fear, part of the ESRC Festival of Social Science.

An inspiring plenary talk by Professor Annette Leibing at the recent ‘Life with Dementia’ conference at Linkoping University, Sweden, described people who are living well with dementia, able to remain active and connected within their communities, as the ‘heroes’ of dementia. However, Professor Leibing cautioned that we must not forget those who are perhaps not seen as living heroic lives, who remain in the shadows.

People with advanced dementia who live in care homes, and those who care for them, remain in the shadows of dementia care. The daughter of a woman with advanced dementia living in a care home recently described to me her sense of her mother living in a ‘twilight zone’, and the sadness associated with this for her as she struggles to connect with her mum. This is an increasingly common experience for families as the population ages and the number of people with dementia rises dramatically. The experience of families who say ‘this is not my dad’ (Sikes & Hall 2016) while at the same time expecting paid carers to ‘maintain the person within’ (Davies et al 2016) points to the tensions and complexity of relationships in this area of care.

So how do we foster hope and challenge fear among people living with advanced dementia in care homes and those who look after them? 

One way might be to re-imagine our relationships – moving away from a focus on language and conversation to other ways we can connect person to person. The recently published briefing paper Face-to-Face: Relating to people with dementia until the end of life in care homes presents findings from a study into how care staff in a care home and people with advance dementia relate to each other, from which we can all learn. 

The Primary Palliative Care Research Group at Edinburgh University have just published a commentary on their vision to establish a Care Home Centre for Excellence, a care home where people would choose to come and live, not as a last resort, where they would receive excellent care and where students can learn and research can help us understand how best to live well with dementia until the very end of life (Hockley et al 2016).

Much has been achieved within dementia care over the last 20 years which is to be celebrated. Now is the time to build on that, shining the light into those areas which are still in the shadows.

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8-10th November 2016: Living with Dementia: Fostering Hope, Challenging Fear

Edinburgh Centre for Research on the Experience of Dementia (ECRED), as part of the ESRC Festival of Social Science in November are presenting an exhibition of photographs and short films produced with and by people with dementia. This exhibition, ‘Living with Dementia: Fostering Hope, Challenging Fear’ shows many people living well with dementia, challenging the stereotype of them as tragic victims of a disease which takes away the person, and the stigma associated with a diagnosis of dementia, which so often marginalises the lives of those living with dementia.

Some of Dr Julie Watson’s work features in Exhibit 5 of the exhibition ‘Beyond words – the language of body and soul’. 

References

• Davies, N, Rait, G. Maio, L. & Illife, S. (2016) Family caregivers’ conceptualisations of quality end-of-life care for people with dementia: A qualitative study. Palliative Medicine DO1:10.1177/0269216316673552
• Hockley J, Harrison J, Watson J, Randall M & Murray (2016) Fixing the Broken Image of care homes, could a ‘care home innovation centre’ be the answer? Age and Ageing. DOI: 10.1093/ageing/afw154 
• Sikes, P. & Hall, M. (2016) “It was then that I thought ‘whaat? This is not my Dad”: The implications of the ‘still the same person’ narrative for children and young people who have a parent with dementia. Dementia DOI: 10.1177/1471301216637204

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

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