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.

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

Care leavers’ narratives of their past and future selves

Ahead of their CRFR seminar on 13 October and National Care Leavers Week 2015 (22-31 October), Lisa Whittaker (University of Glasgow) and Emma Davidson (University of Edinburgh) reflect on their research project Young People and their Future Selves.

This project arose after a chance meeting at the Journal of Youth Studies conference in Glasgow 2013. Lisa was working for a Scottish youth charity (who we will call the Green Project) and Emma had recently finished her PhD. Lisa had always felt that the video diaries filmed by young people at the end of the Green Project’s residential programme were a potentially fascinating resource. In these videos young people reflect on, and talk to, their ‘future self’. We were fortunate to be awarded funding from The University of Edinburgh’s Challenge Investment Fund for a pilot study to analyse a sample of video diaries combined with interviews with young people who had recorded them. We hoped this would give us an insight into the social worlds of vulnerable young people that research often overlooks.

Over the past 18 months we have interviewed 20 young people, some had not grown up in care but most of our sample had. Young people had different motivations for participating. Many wanted to give ‘something back’ following a positive experience at the Green Project but several were still experiencing challenges in their lives and saw the interview as an opportunity to re-engage with support. The interviews themselves were powerful and often very emotional. While we did hear positive stories about care, unfortunately many more were negative.

Our findings highlight the importance of relationships for young people in care, specifically the role of care, love and consistent unconditional support within professional/corporate relationships. Many of the relationships young people experienced were shaped by bureaucratic boundaries and regulations. There were many examples of positive, supportive professional relationships ending abruptly and without warning, and young people’s own ‘natural’ transitions into adulthood often did not match those impressed upon them by the care system. Young care leavers articulated goals and aspirations in their video diaries and interviews, but all too often structural processes denied them the opportunities to realise their aspirations and were left in precarious situations.

Our findings add further evidence to the research and debate about young people’s experiences of care. In particular we see parallels with IRISS’s exciting project Relationships Matter, the work of CELCIS and Who Cares? Scotland. We have shared our findings at several national and international conferences and will shortly submit several papers to leading journals. However, we would like to look beyond measuring success on the completion of academic outcomes. By working collaboratively with practitioners we can share information, clarify our understandings and inform their practice. Following the CRFR seminar, we have more knowledge exchange activities planned (including a podcast for IRISS:FM) which we hope will help build a network between the University, practitioners, policy-makers and young people.

Please note: our CRFR seminar is now fully booked. If you are interested in finding out more we would really like to hear from you. Please contact Emma Davidson e.c.davidson@ed.ac.uk and Lisa Whittaker lisa.whittaker@glasgow.ac.uk and follow us on twitter via @lisawhittaker02 @emz_davidson

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.”