Promoting the use of person-centred language in clinical practice and society: An organisational case-study Joanne Agnelli Dementia Services Quality Manager
INTRODUCTION Language is a powerful tool. The words we use can strongly influence how others treat or view people with dementia. For example referring to people with dementia as sufferers or as victims implies that they are helpless. This not only strips people of their dignity and self-esteem, it reinforces inaccurate stereotypes and heightens the fear and stigma surrounding dementia. Alzheimer s Australia (2009)
What's going on in Social Media? Tweets between 06.04.2015 and 08.04.2015 1 in 4 hospital beds is taken up by someone with dementia. The National Hotel Service. #NHS The day I am diagnosed with dementia is the day I book my ticket to Dignitas. This country still treats animals more humanely than humans Dementia sufferers should not be blocking beds. What is the point of life when you no longer know you are living it? Bang me over the head. People are keen to validate their opinion with 'my nan has Alzheimer's.' Yours is an emotional reaction, not rational opinion.
Alzheimer s Society Response These disgraceful remarks only serve to reinforce the stigma that sadly prevents many people with dementia from feeling like valued members of society. 'Ill-informed comments such as these go against all that we know about dementia. People with the condition tell us that with the right support it is entirely possible to live well and take real enjoyment out of daily life. 'The 850,000 people living with dementia in the UK deserve far more than to be used as bait by people stoking controversy. George McNamara, Head of Policy and Public Affairs at Alzheimer's Society.
Dementia Words Matter (2014) Burden (e.g. people are a burden or cause burden) Senile/senile dementia Dementia sufferer Demented Avoid Victim Plague Epidemic Enemy of Humanity Living death Words and descriptions to avoid (DEEP, 2014)
Dementia Language Guidelines Patient Elderly Mentally Infirm (EMI) Not all there Empty shell Losing their mind Hopeless Tragic Devastating Challenging behaviours Behaviours of concern Obstructive Difficult Aggressive Wanderer Poor feeder Doubly incontinent Vocaliser Sexual disinhibition Screamer Attention-seeking Language to avoid (Alzheimer s Australia 2014)
Malignant Social Psychology Malignant social psychology refers to the social environment in which interactions and communications occur which diminish the personhood of those people experiencing that environment In many cases these malignant interactions are not perpetuated from an intent of malice but rather are brought about through lack of insight or knowledge of the negative effects. The presence may well be linked to the culture of the environment and this has been well described in the field of dementia care. (Mitchell and Agnelli, 2015)
Malignant Social Psychology
How are four seasons Healthcare changing language? Organisational Case study 1: Four Seasons Health Care operates over 400 different care homes making it the largest care home provider in the United Kingdom. Dementia care is an important area within Four Seasons Health Care with a focus on the PEARL project. The PEARL project - positively enriching and enhancing residents' lives - looks beyond the dementia diagnosis, to see the person, understand them, and help them live their lives as closely as possible to the way they always have. All staff at the home, from the care assistants to the chef to the Home Manager, go through months of training. Studies have found PEARL can improve the wellbeing of those living with dementia, including a dramatic reduction in the need for medication.
How are four seasons Healthcare changing language? Organisational case study 2: A key aspect of PEARL relates to the language which are care staff use in practice through verbal communication (with the resident, with their family or friends) and written communication (through their documentation). Through internal retrospective clinical audits and semi-structured interviews it was found that the use of labelling language was often not used intentionally (i.e. non-malignant social psychology). The onus was on the specialist dementia team to put together a specialist policy on appropriate use of language and why it was important for people living with dementia.
The New language. Organisational case study 3: THE OLD CULTURE Suffering with dementia THE NEW CULTURE Living well with dementia or living with dementia Elderly Mentally Infirm Dementia care Wandering Challenging behaviour Allowed to Feeding or toileting Unit Walking or Walking with purpose Distressed reaction or distress or communication Has the right to Supporting with nutritional/elimination needs Home
References Alzheimer s Australia (2009) Dementia Friendly Language: Position Paper 4. Alzheimer s Australia (2014) Dementia Language Guidelines. The Dementia Engagement and Empowerment Project (DEEP) (2014) Dementia words matter: Guidelines on language about dementia. Kitwood, T. (1997) Dementia Reconsidered: The Person Comes First. Open University Press: Buckingham. Mitchell, G. and Agnelli, J. (2015) Promoting Person-Centred Care for People Living with Dementia: Kitwood Reconsidered. Nursing Standard, in press. Swaffer, K. (2014) Dementia: Stigma, Language and Dementia Friendly. Dementia, 13, (6), pp. 709-716.