Shifting Stereotypes in Supporting People Affected by Dementia

On 1st July Professor Dawn Brooker was invited to give the keynote address at the annual FPOP conference (FPOP stands for the Faculty of Older People within the British Psychological Society). Here, we provide an overview of that address which looked at how stereotypes around dementia have changed over the past 30-40 years. Over to Dawn…

The 1980’s – setting the scene

Back in 1984 when I qualified as a Clinical Psychologist there was one key report on dementia by The King’s Fund with the ominous sounding title ‘The Rising Tide’, warning of the tsunami of older people who would need care over the coming years. There were only three text books on psychology and older people, and there were no journals or internet information to overwhelm me, so I found myself to be a subject expert pretty quickly. In 1986 I got the first lead psychology post for older adults in Birmingham, but actually there was only me in the service, so I was the head of me! I loved it, I really enjoyed working with older people.

However, the language used by professionals was often hideous and reinforced negative stereotypes and connotations. In our multi-disciplinary team meetings – which were actually quite progressive – the psychiatrist would refer to the people we cared for as ‘ambulant or non-ambulant dements’. Similarly, the nursing staff called the older people’s in-patient ward the ‘babies ward’. One of my greatest achievements was getting the name of the overarching service I was part of changed from ‘Elderly Severely Mentally Infirm’ to ‘Mental Health Services for Older Adults’. Despite the language, we were providing quite a progressive service with a community focus – pretty cutting edge for the 1980’s.

My role as a clinical psychologist was mainly about assessment, behaviour management and reality orientation. While we did recognise that family carers had psychological needs, the prevailing attitude was that people with dementia did not have emotional needs. Medical professionals thought they couldn’t feel pain, and ingrained within every service was the feeling that dementia was the ‘empty shell that left the body behind’.

Although we were slowly changing the language used, it didn’t necessarily mean that people’s views towards dementia changed, but it was a chance to influence behaviour that heralded the changes to come in the 1990’s.

The 1990’s – new ideas

In the 1990’s there was a culture shift in terms of being able to see the person with dementia behind the diagnostic label. A key figure in changing perceptions of dementia was Tom Kitwood. He was the first person to articulate a psychological theory of person-centred care. I first heard him speak at the PSIGE (Psychology Special Interest Group for the Elderly, latterly FPOP) conference 30 years ago, and I can remember the impact that his talk had on me to this day. The hairs stood up on the back of my neck. It was like he shone a bright light on the work that I was immersed in every day of my working life.

I quickly became trained in Dementia Care Mapping, using the approach to observe people with dementia and realise that they are still a person in the fullest and deepest sense, not just an ‘empty shell’. I fundamentally shared personhood with people living with dementia, and my job was about supporting people’s personhood rather than managing behaviour.

Kitwood’s 1997 book ‘Dementia Reconsidered’ provided a legacy that has stood the test of time, articulating the positive psychology of dementia. The principles around personhood and person-centred care underpin the work of the Association for Dementia Studies to this day. It’s about inclusivity, partnership working and giving voice to people directly affected by dementia.

2009 – The Association for Dementia Studies

When ADS was established in 2009, a lot of terminology that we take for granted now was unheard of in relation to dementia:

Examples of language not around in 2009

2019 – The current situation

Kitwood provided the underpinning theory many of us still work from. Over the past two years I’ve been working with many collaborators and subject experts to update Kitwood’s book. While there are significant differences in the latest version, many of the ideas from the original book still hold true. However, while there was no direct voice of a person with dementia in the original, the updating process has included people with dementia; Christine Bryden wrote the forward, Keith Oliver co-wrote a chapter, and Kate Swaffer wrote the afterward.

Christine Bryden is a prime example of challenging stereotypes. She was diagnosed with dementia in her mid-forties just after Kitwood’s book was published, but 20 years later she has got her PhD looking at spirituality and personhood in dementia. She provides an introduction to the revised book in this video clip.

When updating the book, one of the important areas was to look at the black and white images that had been used which, back in 1997, were pretty revolutionary. They showed people with dementia and others engaged and doing activities, but looking back at them they belong in a different era. The new images of people with dementia were changed to more positive photos, but the captions and definitions remained the same as they are still relevant today.

The biggest area where stereotypes have shifted the most is culture of care. There has been a move to a more inclusive culture with people living with dementia as full and equal citizens, rather than just being seen as a ‘full person’.

Image showing the transition from empty shell to equal citizen

There has also been a change nationally and internationally, with people with dementia leading groups, running groups, and owning groups. The Dementia Enquirers group reflects the change that is taking place. Small action research projects apply for funding and the Dementia Enquirers – a group of people living with dementia – review the applications and decide who gets the funding. Part of the review considers whether people with dementia are really in the driving seat of the research application. Professionals such as Dawn are connected to the group, but have no role in the decision making process. People with dementia have found their voice within society, but Kitwood’s work has made professionals and researchers in this field more willing to hear and indeed amplify that voice.

Looking to the future

Many changes have taken place since I began working as a Clinical Psychologist, but it’s still a work in progress with a long way to go. Our aspirations and expectations of what is acceptable and possible have changed for the better, but if we keep love at the centre of our work we can only continue to improve.

Flower with love at the centre

Connect with ADS on twitter @DementiaStudies and on Facebook @adsuow


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