This post is by Dr Emma Wolverson, one of the Programme Directors for the University of Hull Online MSc in Dementia.
Emma is a clinical psychologist specialising in working with people living with dementia and their families, her clinical work has spanned the dementia care pathway from early assessment and diagnosis to end of life care. Her research is aimed at supporting people with dementia to live well by promoting wellbeing, reducing stigma and improving care.
September is World Alzheimer's Month - launched in 2012, this international campaign aims to raise awareness and challenge the stigma that surrounds dementia.
I’ve spent the last few weeks busily analysing data for a paper that I’m writing with colleagues reporting a study examining UK professionals’ preferences for the words used in dementia care to describe behavioural and psychological symptoms in dementia (“BPSD”), otherwise known as challenging behaviour or behaviours that challenge; non-cognitive symptoms; stress; distress; and unmet needs to name but a few.
Although I’ve read countless studies about BPSD, it’s not a term that I have ever used in my own clinical practice; I’ve always found that it carries little meaning for people with dementia and their families. And I’m just as uncomfortable with the term ‘challenging behaviour’.
I was once asked if I worked with people with challenging behaviour with a view to providing some training on the topic, and my immediate response was that I don’t work with people with challenging behaviour - I work on an acute psychiatric inpatient unit for people with dementia; people whose needs cannot be met in other settings. To the outside world, then, a challenging behaviour unit. I guess I’ve just always thought that the people that I work with are simply very frightened.
Do words matter?
Fast forward to today, where I find myself having spent the last few weeks and months immersed in qualitative data analysis looking at what language people like and don’t like and the reasoning behind those preferences. Unable to see wood from trees, I started to worry that I was getting lost or naval gazing (typical psychologist). Did this stuff matter? Do words matter?
Yet in working through the data I came across quotations that make me stop and take a breath – quotes where professionals talk about their fears that the wrong words might put people with dementia at risk of abuse, or that they might make others see people with dementia as less then human; reduced to just a walking set of symptoms.
Other clinicians shared their belief that some words can be so nihilistic that they make people want to give up, whereas the ‘right’ words can engender hope and empower people to seek to find response.
These findings echo calls from the prominent social media campaign #BanBPSD which has called for a review of language in this paradigm. #BanBPSD feel that systematic labelling gives rise to the consistent inappropriate use of medication, particularly for people living in residential care, to the exclusion of the broad range of factors that might lead to changes in behaviour (Cunningham, Macfarlane, & Brodaty, 2019).
The use of ‘non-offensive language
Indeed, there is growing recognition in dementia care that our words do matter, and as such we have an ethical and moral obligation to use ‘non-offensive language that supports the whole person positively, rather than negative demeaning language that stigmatizes’ (Hughes, Louw, and Sabat, 2006).
Accordingly, there are now a number of language guidelines related to dementia (Alzheimer’s Australia, 2009; Alzheimer’s Society Canada, 2012; Alzheimer’s Society of Ireland, 2008; DEEP, 2014). It speaks volumes that it has been people with dementia, their families and advocates who have been behind the campaigns to review language.
As a person living with dementia, Kate Swaffer warns that, ‘the words we use not only strongly influence how others treat or view people with dementia, perhaps more importantly they can impact how they view themselves and how they relate to others’ (Swaffer, 2014, p711). The wrong words can demean, devalue, disrespect and offend.
Human rights, dignity and care provision
A human rights based approach to dementia recognises that people with dementia and their families should be treated with dignity and receive care and support based on individual need, rather than assumptions. We all know that people with dementia continue to experience discrimination and treatment that contravenes their human rights.
In many cases, this discrimination is embedded in the design and delivery of our health and social care services and rooted in the very language we use within these services. There is much to do to dispel the stigma of dementia and to challenge this inequality, but perhaps thinking about the language we use is an important starting point.
This is why our online masters in Dementia critically challenges common perceptions of dementia as a diagnosis solely of loss and despair. You will focus on human rights, dignity and care provision. and learn what it means to live well with dementia. You can start the course this month - call our course advisers on +44 1482 235569.
Alzheimer’s Australia (2009). Dementia friendly language: position paper 4. Retrieved from: http://www.fightdementia.org.au/dementia-friendly-language.aspx
Alzheimer’s Society Canada (2012) Person centred language. Retrieved from: http://www.alzheimer.ca/en/About-dementia/For-health-care-professionals/culture-change-towards-person-centred-care/person-centred-language-guidelines
Alzheimer’s Society of Ireland (2008). Media Guidelines to Dementia Language: Dementia Friendly Language. Retrieved from http://www.alzheimer.ie/about-us/news-and-media/media-guidelines-todementia-language.aspx
Cunningham, C., Macfarlane, S., & Brodaty, H. (2019). Language paradigms when behaviour changes with dementia:# BanBPSD. International journal of geriatric psychiatry.
Dementia Engagement & Empowerment Project. (2015). Dementia words matter: Guidelines on language about dementia. (DEEP Guidelines). Accessed from: http://dementiavoices.org.uk/wp-content/uploads/2015/03/DEEP-Guide-Language.pdf
Hughes, J. C., Louw, S. J., & Sabat, S. R. (Eds.). (2006). Dementia: Mind, meaning, and the person. International Perspectives in.
Swaffer, K. (2014). Dementia: stigma, language, and dementia-friendly.