Promoting the use of person-centred language in clinical practice and society: An

organisational case-study

Joanne Agnelli Dementia Services Quality Manager

“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)

INTRODUCTION

What's going on in Social Media ? Tweets between 06.04.2015 and 08.04.2015

“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.”

“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”

“People are keen to validate their opinion

with 'my nan has Alzheimer's.' Yours is

an emotional reaction, not rational opinion.”

“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.”

Alzheimer’s Society Response

George McNamara, Head of Policy and Public Affairs at Alzheimer's Society.

Living death

Dementia Words Matter (2014)

Avoid

Words and descriptions to avoid (DEEP, 2014)

Dementia sufferer

Demented

Senile/senile dementia

Burden (e.g. people are a burden or cause burden)

Victim

Plague Epidemic

Enemy of Humanity

Dementia Language Guidelines

Language to avoid (Alzheimer’s Australia 2014)

Obstructive

Difficult

Aggressive

Wanderer

Poor feeder

Doubly incontinent

Vocaliser

Sexual disinhibition

Screamer

Attention-seeking

Patient

Elderly Mentally Infirm (EMI)

Not all there

Empty shell

Losing their mind

Hopeless

Tragic

Devastating

Challenging behaviours

Behaviours of concern

“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

Malignant Social Psychology

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.

How are four seasons Healthcare changing language?

Organisational case study 3:

The New language….

THE OLD CULTURE THE NEW CULTURE

“Suffering with dementia” “Living well with dementia” or “living with dementia”

“Elderly Mentally Infirm” “Dementia care ”

“Wandering” “Walking” or “ Walking with purpose”

“Challenging behaviour” “Distressed reaction” or “distress” or “communication”

“Allowed to” “Has the right to”

“Feeding” or “toileting” “Supporting with nutritional/elimination needs”

“Unit” “Home”

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.

References