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.
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| 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.
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