Well, this “in my shoes” series has certainly attracted some interest – SO many interesting perspectives, all helping build the ‘big picture’ about dementia care from somebody’s unique perspective! So I was delighted when yesterday’s post by Sheila Merriman, talking about the importance of nutrition, was featured on the Department of Health’s Dementia Challenge website.
Today we hear from Dr Trevor Adams, who is using his long experience of dementia care to ensure that people have a voice and can exercise choice and control over their daily lives, as we all like to do. I first met Trevor when I attended the exciting book launch
‘A Practical Guide to delivering personalisation’ by Helen Sanderson and Jaimee Lewis. I understood that some important work was underway and I invited Trevor to tell us more…
I began Passionate Dementia Care just over a year ago, and through the business, provides training and consultancy to organisations seeking to offer personalised support to people with dementia. I have worked alongside people with dementia for over 30 years, first as a nurse, then as a university lecturer, researcher and writer.
I initially started as a student mental health nurse in a big mental hospital where people with dementia were depersonalised and treated like objects. On one occasion I saw a man with dementia being hit three times across the face by a male nurse. I reported the incident to the Charge Nurse. The man got sacked, but I got a bad name for getting him sacked! Everything was weighted against people with dementia, even the staff themselves.
A few years after I qualified as a mental health nurse, Tom Kitwood started to write about person-centred care. Kitwood’s work was pioneering and revolutionary and sought to put people with dementia first and contributes to Department of Health thinking on dementia care such as the National Dementia Strategy, and the recent Skills for Care/Dementia UK document ‘Dementia: workers and carers together’. At its heart was the idea that what staff say and do with people affects the personhood and well-being of the person with dementia. Kitwood called this ‘positive person work’. This was the first and very important step towards developing personalised support to people with dementia.
Since starting Passionate Dementia Care I have worked on various projects, though perhaps the most rewarding has been with Helen Sanderson Associates and others who have introduced me to a range of ideas and approaches that have emerged outside ‘person-centred care’ and within another stream of thinking, ‘person centred practice’. Like Kitwood’s important work, ‘person centred practice’ draws on the work of Carl Rodgers on person centred therapy, but is different because it focuses on supporting people make choices about the sort of services they want, and through which are able to gain control of their life. In addition, various practical, interactive tools have been developed that can help people with a range of cognitive impairments, including dementia make choices and have control. This is the second step towards developing personalised support to people with dementia.
While there has been recognition that many people, particularly people in the early stages of dementia are able to make worthwhile choices, we believe the work we have been doing offers a closer fit with government thinking on personalisation and sees people with dementia as full participants within care homes and local communities. We would suggest this is an important part of what it means to be a person. We believe our work is exciting and are looking forward to launching it in the Autumn, and will comprise a self assessment tool for homes developing personalised support to people with dementia, and also a small booklet outlining our approach.
It was hoped that the development of community care would reduce instances of violence towards people with dementia. While there is no doubt that there are many examples of excellent practice given to people with dementia, media reports repeatedly show that this is not the case, and that still many people with dementia who find themselves treated without respect and dignity, and not as though they are people. This is not acceptable. The work we have been doing, and will soon be launching, we would suggest, sees people with dementia as having a voice, being full participants within care homes, and providing self-assessment tool and range of practical tools that will help people with dementia make choices and have control.
Trevor Adams PhD runs Passionate Dementia Care which offers consultancy and training in personalised support to people with dementia.