Overcoming stigma should be at the centre of dementia care

When I qualified as nurse in 1997, I had no idea of what it meant to live well with dementia, or of the effect that negative language has on the stigmatisation of the disease.

In 2005, I became manager of a nursing home that had an elderly mentally infirmed (EMI) unit. The term EMI did not sit comfortably with me, but it was widely used by both NHS and care home staff. Other commonly used terms to describe people living with dementia were ‘feeder’, ‘wanderer’, ‘aggressive’, ‘challenging’ and ‘sufferer’.

While I am not proud to admit that I also used these terms, I had not had any formal dementia training and was therefore oblivious that the language I was using stigmatised people with dementia.

When the nursing home embarked on a project to further enhance the quality of life of people living with dementia, I had the opportunity to attend training sessions on person-centred care and dementia care mapping, pioneered in the late 1990s by the late dementia expert and professor of psychogerontology Thomas Kitwood.

We also learned about the work of Dawn Brooker, professor of dementia studies at the University of Worcester, and civil servant and mother of three Christine Bryden who was 46 years old when she was diagnosed with dementia. Ms Bryden is an active advocate for people living with dementia, and is passionate about overcoming stigma and challenging the use of negative language in describing people with dementia.

The dementia training was invaluable to me and my colleagues. We learned how to treat people living with dementia as unique individuals, and to move away from a medical model of care towards a biopsychosocial model. The toughest challenge with achieving this culture change was not the staff in the care home, but visiting professionals who continued to use negative language in describing people with dementia. This made conversations difficult, particularly with the ‘challenging behaviour team’ who supported the staff.

The very name of this team gave families the impression that it was something to be feared. So I was delighted to hear recently that the name has been changed, and they are now known as the 'dementia home support team'.

It saddens me that, as a society, the language used when talking about dementia creates a negative image. The media often refers to ‘dementia sufferers’ rather than ‘people living with dementia’, devaluing the contribution to society that people with dementia continue to make.

Recently I attended the Alzheimer’s Disease International conference in Perth, Australia, to present on ‘promoting the use of person-centred language in clinical practice and society’. The take home message from the conference was the inspiring voices of those living with dementia, and the simple statement: ‘no longer about us, without us’.

About the author

Joanne Agnelli is dementia services quality manager for Four Seasons Health Care
Twitter: @JoanneAgnelli